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LungPedia Table of Contents & Reference Document:

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Table of Contents
Words of Caution



Patient-to-Patient Resource

Anecdotal Side Effect s Advice and Suggestions


These suggestions are based upon successful personal lung cancer patient experiences and thus are anecdotal in nature. Use common sense when following these suggestions. Discuss your side effects as well as the suggestions with your physician or oncologist before taking any over-the-counter supplements or other therapies as they may interfere with your treatment.


To make this resource “user-friendly” and accessible to all, we present information in a conversational style using layman’s language. Topics are identified by more recognizable descriptions and clustered by body organ system descriptions following medical industry standards. The sub-topics are then listed alphabetically for ease of use. We have also included the official names of the body’s organ systems for those who have an interest in accessing additional information on other more medically focused internet sites. We've added links within the Table of Contents so you can quickly move down into the body of the document to reference any bulleted or underlined topics of interest.





Varying Blood Pressure Values

Blood pressure ranges seem to vary with different targeted therapies. I noticed that when I was on the Tarceva / Alimta combination my blood pressure value range, especially the upper systolic value, increased by at least 20 points, moving me into a borderline high blood pressure status. Over time it came down a bit but was never near my pre-treatment “normal” range. Now that I am being treated with a newer mutation-specific targeted therapy, my blood pressure range has gone down quite close to my “pre-chemo” treatment range. Recently, however, my lower diastolic value has been decreasing over time so that my most recent reading was 53 of a blood pressure reading of 110/53. I notice that I am a bit lightheaded at times on this new regimen.



Low diastolic values may be improved with increasing your hydration.

High systolic values may be improved by reducing salt intake.

Keep track of and consult with your physician if your blood pressure values are trending outside of the normal range.



The lymphatic system is a circulatory and drainage system that defends you against disease, removes waste and toxins and maintains fluid balance. Your lymph nodes are a part of this system and this is why cancer can show up in these nodes if they are located near an affected organ or site. Some treatments can trigger edema, which can more likely occur in your extremities (legs, ankles, feet) but can also appear in your face or throughout your body.



Edema is more likely to occur with certain treatment regimens than others. Keep hydrated and avoid salty foods to avoid fluid retention. Staying hydrated helps to clear the excess fluids and stimulates the lymphatic system. Symptoms often wax and wane.



Wear compression knee high socks.

Elevate your legs to encourage lymphatic drainage.

Walk and/or exercise as the movement helps to pump the fluid in your legs, ankles et al to be processed back up through your lymph system and later through your kidneys.

Avoid salty foods.

Increase your intake of fluids, ideally water, to help flush your system.

Take care of your feet and be aware of and care for sores or blisters. Avoid using shoes that may be too high or tight.






It’s real, no doubt about it. Multitasking goes out the window and it’s hard to assimilate new thoughts into memory; it’s like a short-term brain short.  In addition, accessing previous knowledge or accessing words seems more problematic. I liken it to having a slow computer CPU; the information is in there, but it takes time to access. Frustrating!!!


A method to help you assimilate new information is to incorporate active listening techniques such as taking notes while you are having a discussion. In other words, employ several information gathering techniques at one time (ie aural, visual methods), rely less on being passive (ie watching television or just listening), and discuss the topic by asking questions of your discussion partner to help clarify your understanding and absorb it into your rather foggy brain.


Also, my ability to “think on the fly” has been reduced so if you have an important meeting where various topics will be discussed, ask for an agenda or at least find out what topics will be discussed beforehand so you can intelligently think through, mull over your thoughts and formulate your questions or answers beforehand.



Keep lists; use your iPhone calendar tasks and reminders heavily to jog your memory.

Keep a regular schedule to reinforce patterns and thus memory as well.

If you’re taking multiple medications use a pill organizer so you don’t forget or double take your meds.

Not sure if Lumosity (free “brain games”) really helps; the jury is still out, but it can’t hurt.



At times I felt like my “tail feathers were dragging.” I couldn’t seem to recover and minor tasks often rapidly exhausted my energy level. I often felt a mild general achiness as well.



B12 shot: every quarter or as needed; administered by my general practitioner. It was a clinical trial requirement when I was being treated with Alimta/Tarceva, but I continued to request the shot as needed after I stopped that treatment regimen as I found the B12 shot helped alleviate this symptom. I continue to receive B12 shots to this day.

Acupuncture: some other lung cancer patients have mentioned that acupuncture has helped  alleviate their symptoms. I haven’t tried it myself.

Hydrate, hydrate, hydrate! Dehydration can exacerbate weakness and fatigue.

Even if it is only for 5 minutes, move; even a walk around the block will do. Energy begets energy.


Sleep Issues

I periodically have difficulty not so much with falling asleep but with waking up after a few hours. I am awake for a period of time, then fall asleep at 6 am. This is frustrating and exhausting. My pulmonologist had a number of recommendations, which are included below.



Plan to sleep 8 hours; go to bed late if need be (ie 12 pm), then rise and get up at 8 am.

Do something calming before going to bed (read a book, listen to soft music). Don’t do anything stimulating.

Avoid exposure to “blue light” activities within 2 hours of bedtime. It stimulates the brain to remain awake. That includes most electronic devices.

If you wake up in the early am, don’t use your iPhone, watch TV, or do anything generating “blue light.” It’s much better to bore yourself back to sleep.

You are retraining your brain to correct itself back into a normal sleep rhythm. It may take several weeks, but use sleep deprivation as a tool.

Exercise during the day seems to help.

Get some sunlight during the day, especially late afternoon sun, to reinforce the day/night brain chemistry.

Avoid caffeine after 2 pm.

Lavender aromatherapy enhances relaxation and sleepiness.

Camomile tea is mildly sedative.

Sleep inducing foods include milk, turkey, tuna, lettuce, bananas, cherries and almonds.

Melatonin helps; take a tablet 1 hour before you want to fall asleep. If really needed, ask your doctor for a prescription for Ativan (prescription). I take it when I absolutely cannot get to sleep.

Try using Ambien (prescription) periodically; it seemed to help at times but doesn’t correct the sleep cycle issue.




Joint Pain

Valerie had significant joint pain with her immunotherapy treatment. It was terrible at first; every single bone in her body hurt, even the tiny ones in her fingers. Over the months the joint pain decreased until it was almost unnoticeable. We don’t know if this is a common experience.



If you have swelling, report it to your doctor right away.

Ask your doctor what you can take to decrease the pain.

Advil (2 pills every 6 hours), when I needed it, took the edge off when on immunotherapy CAUTION: Physician review required for use of Advil/Aleve et al.; for any analgesic containing (naproxen sodium)

Vick’s VapoRub turns out to be great for joint pain and muscle aches in addition to relieving cough symptoms.

Epsom salt baths.


Lung Pain

Periodically I have lung pain, which I assume may be related to lung tissue inflammation. According to my oncologist the lungs have no nerves but surrounding areas, ie possibly the pleura, may be the source of such periodic discomforts.



Tylenol takes the edge off. Also, it is less likely to interfere with treatment regimens.

Avoid NSAIDS; naproxen sodium, Aleve/Advil et al as it is contraindicated with several therapies and is hard for your liver to process.

None of us have received much feedback from our physicians as to the cause or how to alleviate this issue.


Peripheral Neuropathy

When taking certain chemotherapies as well as targeted therapies I found I periodically observed finger and, or foot / toe tingling, burning, prickling, needles and pins feeling especially at night. It never completely went away. Keep an eye on this condition as it can lead to nerve damage resulting in clumsiness (ie holding, dropping things) as well as other issues.



Vitamin B-6 as needed: anecdotally recommended by a physician; may help lessen symptoms. I've tried it, it seems to help lessen the burning a bit.

Deep tissue massage may help stimulate blood flow and help with nerve pain. (I have no personal experience on this subject but hearsay says it is helpful.)

Acupuncture has been recommended which may help manage neuropathy. (I have no personal experience with this method of alleviation, but another cancer patient has mentioned it has been helpful.)

Walking, exercise, getting the blood circulating seems to help.

None of us have received much feedback from our physicians as to the cause or if there is a way to alleviate this issue.





Eating Issues / No Appetite

Traditional intravenous chemotherapies can often cause nausea and vomiting, thus making it extremely difficult to eat. Despite this issue, it is very important to maintain your weight during these treatment regimens. You need your reserves to fight the cancer and help your body recover from treatment.



Instant Breakfast plus: Add a scoop of whey powder (protein) to an instant breakfast mix, add cold milk/ice cream/yogurt, fresh or frozen berries or banana or chocolate, etc. Blend and drink; keep cold as it’s soothing on a sore throat. You can take in a lot of nutrition and calories in a small portion. I buy the “instant breakfast” and whey protein powder at a health food store.

Baked custard; it’s delicious, full of protein, calories and is easy to eat and digest.

Mashed potatoes are tasty and go down easily.

“Bone” broth is an excellent way to get collagen, nutrients, minerals and protein into your system and is easy to digest.

You can put anything in a blender and make an easy-to-drink meal, and cooked foods are easier to digest than raw when you are having a bad day.

Try eating small portions more frequently throughout the day.

Meal Replacement Shakes have improved in taste and are full of calories and vitamins.


Halitosis or “Horridly Bad Breath”

Some oral targeted treatment regimens can cause really terrible bad breath, which periodically occurs and seems to come from the gut. It is typically at its worst in the morning. It could be similar to an acid reflux-like issue or it could be the stomach and/or intestinal lining cells that are dying off from the treatment regimen but we don't know for sure. Lack of saliva secretion can also add to this issue. 



Brushing the tongue well with a soft toothbrush and good oral hygiene can somewhat help.

Biotene Oral Rinse: gargle periodically (ie before going to sleep helps stimulate saliva production).

Try gargling with mouth wash (ie Crest Pro Health) but some seem harsh as they include alcohol as a main ingredient.


Take probiotics to help get the intestinal tract back into balance.

Eat mild foods during these episodes.

Try taking calcium/antacid after eating if certain foods give you indigestion. Ask your physician beforehand as some antacids can interfere with the effectiveness of your cancer drug treatment. Best to wait at least an hour or two after taking your oral targeted treatment.



Staying hydrated is extremely important in reducing side effects and making yourself feel better. Dehydration causes weakness, fatigue, brain fog, achiness, low mood, headache and muscle cramps.  Hydration also plays a key role in protecting your other organs from damage from cancer treatments ie kidneys.




Lemon water or water with fresh mint or cucumber slices helps make water more palatable.

Fresh Coconut Water has electrolytes and potassium and is touted as being similar in composition to blood serum. I buy frozen coconut water at Costco .

Oral rehydration mix (electrolyte balanced), are reputed by the manufacturer to be quickly absorbed by the gut. Mix it with juice (ie cranberry) to mask its taste.

Gatorade is also a balanced electrolyte solution, as is G2, which is lower in sugar.

Citrus popsicles.

Diluted orange juice works well or sugar cane juice.

Be aware of the pH of your beverages used for hydration. Acidic beverages lower the pH in the mouth and increase your risk of developing tooth decay. While Gatorade can be helpful for electrolyte replacement, it is also acidic. The same applies to citrus-flavored beverages.



Some treatments can cause nausea. Traditional intravenous (IV) chemotherapies are often the biggest culprit. Patients may experience nausea the following day or once the dampening effects of steroids start to wear off after infusion drug regimen treatment. Take prescription nausea medications on a regular schedule as recommended. It’s much harder to combat moderate nausea once you’re already feeling sick and thus physicians highly recommend being aggressive with anti-nausea meds if you are prone to having this reaction.



Ginger Ale or Ginger Beer containing real ginger, not just flavoring (ie Natural Brew “Outrageous Ginger Ale” or other brewed ginger ales). I buy it at Whole Foods.

Candied ginger

Ginger tea (ie “Prince of Peace Ginger Honey Crystals” found at Asian markets).

Eat protein instead of crackers (ie hard boiled eggs, nuts) for nausea.

Zofran is a prescription anti-nausea drug. Use the under-the-tongue formulation if you’re already nauseated. Be careful not to over medicate while taking Zofran. Zofran often causes constipation as a side effect.

If nausea is a big problem, even with the use of Zofran, ask your doctor for a prescription for Emend.


Probiotics / Use with Antibiotics

If you’re prescribed an antibiotic, be sure to pick up a broad spectrum probiotic at the same time. (Ask your pharmacist or health food store.) Antibiotics kill the infection but also kill off the beneficial gut flora so you need to reestablish it by using probiotics. Continue taking the probiotics for a couple of weeks after you’ve completed the antibiotic. I was prescribed Cipro for a urinary tract infection, which also quickly cleared out my good GI bacteria and set up an environment for a very serious bacteria called Clostridium difficile (c. diff.). C. diff. causes terrible diarrhea and can be life threatening. If you have issues, see a gastroenterologist.



If you have bad diarrhea soon after taking an antibiotic, see your doctor to be tested (stool sample) for c. diff.

See a GI specialist for treatment if c.diff. is confirmed. Keep taking probiotics throughout treatment (my GI specialist recommended FloraStor.)

Follow your GI specialist’s recommendations, but most likely eat a BRAT (bananas, rice, applesauce,toast) diet and don’t ingest dairy until your GI tract stabilizes.

Once your doctor gives you the green light, start eating Greek yogurt and drinking Kefir (a yogurt drink I’ve found at Whole Foods) to add more good bacteria to your GI tract and add protein that you’re lacking on the BRAT diet.

Drink coconut water, oral rehydration solutions or Gatorade to replace electrolytes.

Stay hydrated.


Taste Distortion Issues

Some treatment regimens can distort or cause strong flavors (ie metallic or bitter) that make eating or drinking a challenge. Taste distortion can become a real issue with staying hydrated. My targeted therapy periodically caused a strong and bitter quinine-like flavor that made drinking fluids distasteful. I suspect with certain therapies, this taste distortion can be more pronounced if you're even slightly dehydrated.



See suggestions listed under “Hydration.”



Obviously you want to avoid getting nauseated and vomiting. Take anti-nausea drugs early on before you become too nauseated. It can be difficult to stop retching once it starts.



Zofran is a prescription anti-nausea drug. There is also an under-the-tongue formulation if you are already nauseated or can’t keep it down (unfortunately, this formulation is pricey.)

Rinse your mouth out with ¼ teaspoon of baking soda in 1 cup of warm water; don’t swallow.

Drink fluids and include some fluids containing electrolytes to keep your body properly hydrated.




With certain treatments (ie targeted therapies) there is a variable transition from diarrhea, intestinal gas, intestinal pain alternating with constipation. When taking a well-known targeted therapy I never figured out what the trigger was for the change from one symptom to another. With another mutation targeted therapy, however, I suspect the varying intestinal issues may have been dose related. While taking a targeted therapy combination regimen I also become more sensitive to spicy foods; hot chili peppers and chili oil were a trigger so I avoided them altogether.



Avoid spicy foods; stick to a more bland diet.

Avoid red chili flakes, especially its seeds, and chili oil.

Avoid overly greasy, fried or rich foods when having issues.

A balanced diet, including a solid portion of vegetables and fruits, seems to work, but avoid those types of vegetables or legumes that might cause gas.

Avoid green vegetables or anything else with high fiber.

Bone broths are nutritious and soothing during the more challenging times.

Follow a BRAT diet (bananas, rice, applesauce, toast) if you’re having a rough patch.

Probiotics help maintain intestinal health; purchase these at a health food store or pharmacy. I found taking a broad spectrum of probiotics helped and took them regularly when I was having issues.



Constipation can become a major issue, especially since intravenous (IV) chemotherapy treatment combined with steroids tend to be a double whammy . It’s critical to restart and/or keep your intestinal tract moving so the drugs and dead cancer cells can be removed from your body. Call your nurse if these remedies don’t work within several days.



Stewed prunes, dried prunes or prune juice

Senna natural laxatives


Colace or other stool softeners

Peri-colace, if you need peristaltic (movement) stimulation in addition to a stool softener.

Drink as much water as possible.

Exercise such as walking can help get things moving.



Some treatment combinations can cause a periodic swing from one intestinal ailment to another.  Add something that bulks up in your intestinal system, thus slowing things down moving through the gut. Even if the product, like fiber or Miralax, is supposed to be used for constipation, it can also help to regulate a touchy gut.




Imodium OTC

Bulking agents



May occur during or after a bout of constipation.



Use flushable baby wipes to prevent bleeding and keep anus clean after defecation.

Use Desitin to keep skin irritation to a minimum.

Preparation H or a prescribed topical anti-inflammatory helps reduce swelling and pain.

Take steps to treat underlying constipation issue so as to not further exacerbate hemorrhoids as straining will compound the problem.






Eyelashes can become wirey and grow in strange directions on a certain targeted therapy. They can grow inward toward the eye and thus can irritate or cause abrasions on the eyeball. Eyelashes can also become ingrown or infected. Call an ophthalmologist if you are having more serious or ongoing issues with these eyelash conditions.



Gently scrub the eyelash line with warm, wet washcloth with a bit of baby shampoo to clean infected or ingrown eyelashes.

Use twice daily warm, wet compresses for infected or crusty eyelids.

Apply moisturizing eye drops approxomately four times a day.

Eyelash curler can help correct errant eyelashes.

Mascara can help to control unruly eyelashes.


Hair Changes (“Tarceva Hair”)

My hair grew out to be quite coarse, dry, rather kinky, and was the texture of wet cotton when I washed it. I used very moisturizing shampoo and conditioner and a pre-styling spray prior to drying it. I washed my hair once a week to keep it and my scalp from becoming too dry. Be careful about coloring your hair as it is rather delicate in this state.



L’Oreal Absolut Repair Cellular (Lactic Acid) Shampoo or Awapuhi Wild Ginger Moisturizing Lather Shampoo, Paul Mitchell, black bottle; purchased from a salon or online.

L’Oreal Absolut Repair Cellular (Lactic Acid) Conditioner or Awapuhi Wild Ginger Keratin Intensive Treatment, Paul Mitchell, black bottle.

L’Oreal Pro-Keratin + Incell Correcting Care Masque for Damaged Hair

L’Oreal Absolut Repair Cellular (Lactic Acid) Styling Spray.

Apply Argan oil to protect; moisturize mid section, ends before drying or styling.

Keratin Power Dose, L’Oreal, applied in a hair salon after shampooing makes hair shiny, smooth and helps repair frizziness.


Hair Treatments (USE WITH CAUTION)

Do not use hair straightening techniques or products (ie Brazilian Blow Out et al) either over-the- counter OR at a salon. These products / treatments can be quite irritating to your lungs; it is NOT good to breathe in the fumes as some of the agents might later be found / proven to be toxic or may cause harm to your sensitized lungs. Even the “newer” treatments may be suspect. My oncologist counseled against using such products. Use deep conditioning treatments instead to help maintain your hair’s integrity.




Split Skin or Nails on Fingers and/or Feet / Nail Care

Patients on a certain targeted therapy seem to be predisposed to this particularly painful, skin- related issue. Be careful with your hands, fingers, nails as they can become very dry and can split or crack around the fingernail bed, which is quite painful. I found a wonderful product, a nail and cuticle conditioner, originally used for horse hoof maintenance. I rubbed this conditioner into my fingers and nails (heels, too, as needed) at night and had really good results with this routine. My oncologist noticed how well it worked and asked me what I was using.



Healthy Hoof Intensive Protein Treatment. I buy it at a local beauty supply store.

Use Newskin, Nexcare, other waterproof bandages, superglue for split fingers, heels and skin cuts. Wash, dry the split first, then apply;, it lasts approximately three days.

Wear vinyl, non-latex medical gloves or rubber gloves when house cleaning, washing dishes or applying nail polish remover.

File nail edges in a rounded shape as a sharp or square nail edge is more likely to cut the skin.

Avoid tight shoes and high heels.




Extremely Dry, Sensitive Skin

I took showers infrequently and used soap sparingly while I was being treated with a certain targeted therapy. When I showered I mostly used tepid/warm water to wash and rinse and used mild Shea Butter soap as needed. I stopped taking baths as it was too drying to my skin during this treatment phase. Bathing can help soak and clean the skin, but perhaps use epsom salts or bath oil and avoid bubble baths. Avoid all skin products containing alcohol. Let skin dry fully before applying lotions or cream to avoid stinging.



Lindi Body Lotion: Lindi makes products specifically for people going through chemotherapy.

Buy it online.

Emu oil (yes, from the bird); I add it to the lotion as it's very concentrated, soothing and absorbs well.

Shea Butter soap or other moisturizing, mild, hard-milled soaps

Cetaphil Facial Cleanser, Soap and Lotion or Cerave, non-soap cleansers; both are very mild, and contain no perfume.


Face, Body Rash

A certain targeted therapy can initially cause a disturbing face and possibly a body rash -- extremely red pustules, tender sores, swollen -- which is a bit unnerving at first, but later it dries out and heals. Be careful at first until you see which topicals work for you. The rash will calm down and wax and wane as does the scalp rash if you get it. I became quite sun sensitive so the sun made the reddish rash on my cheeks become quite red, or more red rather quickly. At times later on it looked as if my cheeks were flushed; it could present itself in a butterfly-shaped manner or appeared as if I had rosacea.  



Warm moist compresses for 15 minutes, 3 times a day can help clear up the pustules and are soothing.

Cetaphil Facial Cleanser: very mild, no perfume.

Lindi Moisturizing Face Serum: Lindi makes products specifically for people going through chemotherapy.

Your oncologist may prescribe a supplemental antibiotic and steroid cream to reduce the rash occurrence or related skin infection.


Fungal Skin Infections

Mild rashes in creases or folds in skin (ie inside of elbow) can be fungal infections.



Keep the area clean and dry. Over-the-counter treatments for athlete’s foot or jock itch (ie clotrimazole) will address this issue. Use a fungal powder to avoid recurrence.

Note: Use of steroid cream will worsen fungal infections.



Certain targeted therapies cause the skin to be photosensitive even if you aren’t presenting the facial rash or redness. Avoid, prepare for sun exposure as your skin will be extremely sensitive to the sun so cover up as much as you can during any extended time spent outside. Sun sensitivity can more quickly and more severely occur than under normal circumstances.



Wear a hat and longer sleeves, even if you use sheer cotton shirts as an overlay to short sleeves.

Use good quality, moderate SPF, non-comedogenic sun tan lotions on face, arms, legs (ie Neutrogena Ultra Sheer).


Plugged Pores / Acne

Pores can become clogged with tiny waxy-like sebaceous plugs which can result in bumps or acne, especially when on longer term maintenance treatment intravenous chemotherapy.



Use a sensitive-skin cleanser. Try not to pick at the bumps / acne; clean the area as you are showering or washing your face as your pores are open.


Scalp Rash

Periodically I had a pimply, itching, burning rash on my scalp when I was on a certain targeted treatment. The condition seemed similar to hives and scratching the bumps made them really burn. This scalp rash drug reaction can also cause scabs on your scalp. This condition waxed and waned with ongoing targeted therapy treatment.



Calamine lotion soothes the scalp rash.

Caladryl clear helps for scalp rash and also helps with pain; it contains camphor.

Zinc Shampoo DHS (prescription) for scabs on scalp helps.

Ciclopirox 1%, Capex or Olux (foam) Shampoos (both prescription) for itchy, bleeding scalp.

Use non-soap shampoo to prevent drying (ie Shea Moisture co-wash).






After my first dose of a triple combination of traditional chemotherapies I was thrown into menopause. As my cancer profile identified my tumor as being slightly hormone receptor positive, I could not take HRT (Hormone Replacement Therapy) to offset the effects of the rapid transition into menopause. A tumor sensitivity profile including hormone assessment should be a topic you take into consideration and discuss with both your oncologist and gynecologist. Check with your oncologist BEFORE using any systemic (ie oral) hormone-based prescription or over-the-counter therapies.



If you can, have your tumor tested to see if it has any hormonal sensitivities.

Discuss your symptoms with your gynecologist.

Localized minimal dosage (ie Vagifem {prescription}) of hormones can help lessen the effects (ie drying, lessening of vaginal tissue integrity).

Estroven (over-the-counter) is a systemic treatment for hot flash relief. You may need to take it for a few weeks before you really notice a difference, but I’ve stopped having hot flashes. NOTE: Talk to your oncologist before taking any oral menopause assistance supplement.

Be aware that tofu, edamame (soy beans), soy milk, etc all contain estrogen-like or mimicking substances that can possibly stimulate tumor growth if your tumor has hormonal sensitivities. Limit all soy intake intake as much as you can.





Your immune system is often compromised, whether it is due to the cancer itself dampening the effectiveness of your body’s defense system, the effect of chemotherapy, targeted therapies, etc. further burdening your natural immunity or other factors playing a role in adding complexity to your life. Whatever the reason, you will find you need to be more aware of your circumstance and will need to take additional precautions to keep yourself as healthy as possible.



Wash your hands frequently and avoid touching your eyes, nose, mouth when using public facilities.

When you are at your treatment nadir (immunity lowpoint) request that friends not visit if they’re under the weather.

Follow your physician’s guidance, especially when undergoing intravenous chemotherapies and/or radiation. These treatments tend to affect your immune system more deeply because some regimens also require the use of steroids to mitigate post-infusion side effects.


Autoimmune Issues

At various intervals during a combination targeted treatment regimen I presented several different groups of symptoms that were suspected by several physicians to be autoimmune diseases, but when tested for specific autoimmune diseases at various times, that particular disease was ruled out. For instance, I periodically presented a butterfly-shaped rash across my cheeks and nose that can be a marker for Lupus, but I tested negative. At a later time I had an allergy skin test conducted on my back and a majority of sensitivities were indicated even though I had never suffered from most of those allergies previously. Once I discontinued this cancer therapy combination these varying autoimmune-like symptoms and sensitivities went away.



Unknown. I’m curious to see if any other patients undergoing cancer treatment had a similar experience?

Is cortisol a factor here as an imbalance of it and/or the thyroid might affect/cause immune- like symptoms to occur?


We’d appreciate a physician’s insight into addressing the above mentioned malady.


Wound Healing Issues

Because your immune system may be additionally compromised due to some chemotherapy or targeted treatments interfering with the body’s ability to heal wounds, you may notice it takes longer for your skin to heal even if you have slight wounds or scratches.These open wounds may make it easier for infections to take hold so be more conscientious in periodically  giving yourself a once over inspection.



Be careful, especially with your extremities such as your feet in keeping them clean and dry and well attended to if you have blisters or injuries. Your circulation to these areas may not be as robust as in the past so healing may take longer.

Be more judicious about wearing comfortable shoes and keeping your toenails trimmed and feet clean.

If you get a wound, even if a minor one such as a bleeding hangnail, keep an eye on it and if it becomes slightly red or puffy, wash the area, put neosporin and a band aid on it, and check it daily.

If you get scabs or sores on your scalp try not to pick at them as they may become infected.

If you have a larger wound, such as from surgery, once it is completely closed you may consider using a product such as Mederma as it is supposed to help healing and minimize scarring. I’m not sure it works but if nothing else its moisturizing effect may help with the dry skin around the healing site.






Protect, guard your kidneys! They are precious filters. Damage to them can compromise future clinical trial eligibility as well as your quality of life. Contrast dye in CT scans and (less so) radioactive sugar water used in PET/CT scans can damage your kidneys, bladder etc. Stay well hydrated before and after scans. You want to avoid having to undergo dialysis at a later time in life.


Hyperkalemia / High Potassium Level

Hyperkalemia or high levels of potassium in your blood can occur if your kidneys aren’t working properly. It can also be an indication of kidney disease. Abnormal potassium levels can cause symptoms such as muscle cramps, nausea, diarrhea, fatigue, low blood pressure, confusion and can cause changes in heart rhythm if the values become too high. Blood potassium levels are in the normal range if between 3.6 and 5.2 millimoles per liter; a value over 7 can be dangerous. (reference WebMD and Mayo Clinic websites)



Drink fluids; staying hydrated is very important. Fluids can help flush the excess potassium from your system.

Don’t drink Gatorade or other such products as they have potassium added as an electrolyte.

Avoid high potassium containing foods such as bananas, scallops, potatoes, figs, orange juice, meat / protein to name a few examples.

Talk to your physician to monitor and manage your blood levels


Increasing Creatinine Values

Keep an eye on your creatinine levels and be aware if there is an increasing value trend over time. Keep a log at every appointment of the several key measurement values so as to more easily spot possible trends. Certain targeted therapies can cause a slow increase over time in creatinine levels, which indicate stress and possibly damage to your kidneys. A more recent mutation targeted therapy caused me to have an immediate increase / jump in creatinine measurement levels, but it is not known whether the increased value level is permanent or will drop back to a more normal range after that particular drug therapy is discontinued. After six months my creatinine values continue to be elevated, but my kidney function is now stable according to supplemental tests. Higher creatinine levels, indicating slightly compromised kidney function, led my doctor to prescribe a reduced dosing in two subsequent treatment regimens.



Be aware of scan substances (ie metals in contrast, etc.) as they can be toxic if your kidneys are compromised.

Stay well hydrated before and after your scan; keep drinking to flush the contrast out of your system.

Stay hydrated as dehydration can worsen your creatinine values as well as affect how you feel.



Urinary Tract Infections - UTI

Because your immune system is dampened by either or both your cancer or cancer treatment you will be more susceptible to urinary tract infections. Having sexual relations will also increase the likelihood of this infection, especially for women; unfortunately several of us have noticed the correlation between having sex, which is later followed by getting a UTI. Talk to your physician about fighting the infection with antibiotics if you present with persistent symptoms.



It is important to cleanse yourself before and after having sex with a mild soap and water rinse as using a damp cloth might just spread bacteria around the area.

Cleanse yourself front and back to minimize the presence of normal flora, bacteria.

After having sex, pass urine to cleanse the urethra.

I suggest using a bidet routinely or purchasing a personal hygiene modification for your toilet or shower.

Drinking 100% cranberry juice may help flush bacteria out of your bladder as this unique juice’s composition makes it more difficult for bacteria to stick to the bladder’s inner walls and urethra.





Liver Toxicity  (TRIGGERED BY INITIAL ROUNDS OF TREATMENT, especially after first dose or early on with some targeted therapies.)

When I took my initial several doses of a mutation specific oral treatment, I had a very strong response, so much so that I was presenting all of the symptoms under the “contact your physician” section of the drug description document. Troubling symptoms were that my urine was quite dark and my stool was rather light, almost light grey in color. I felt rotten and was snoozing most of the weekend after starting treatment. My liver was in distress; I probably should have gone to the ER but called the nurse/physician on call. We stopped (oral) therapy for a couple of days to let my system deal with the toxins from, I surmise, the dying cancer cells that were burdening my system. Valerie also had a strong response to her targeted treatment combination initial dose and had jaundice that presented itself as yellowed whites of her eyes and later a yellow cast to her skin; she had malaise as well. Your physician may assess whether to reduce your dosing, but try to weather through this early phase as your treatment may initially be kicking the tar out of your cancer!



Call your physician immediately if you present with these liver toxicity symptoms!

Avoid NSAIDS, naproxen, Aleve et al as it is contraindicated with several therapies and is hard for your liver to process.

DRINK FLUIDS; stay hydrated, especially when starting a new treatment regimen!


Low Albumin Levels / Hypoalbuminemia

This is another value on your periodic blood report for follow up with your general practitioner if you see a trend of your albumin level being lower than normal. This measure may indicate that there is some issue going on with your liver.



Be more aware of the amount of protein you are consuming and add more in as protein is used in rebuilding many aspects of your body.

Eat more red meat, chicken, fish, nuts, as well as other high protein foods.

Ask your physician about the implications of this condition.   






I strongly recommend adding to your physician team a pulmonologist who has solid experience in treating lung cancer patients. A pulmonologist will assess your baseline function, can help optimize your breathing and hopefully minimize your discomfort throughout this unpleasant journey.


Lung Function / Breathing Issues

My pulmonologist believes managing the inflammation in the lungs reduces additional lung tissue damage caused by the inflammation itself. Additionally, this specialist suspects, but this observation has not yet been proven, that by managing lung inflammation, which may be exacerbated by lung cancer, inhalers COULD supplementally help manage the cancer itself.



Add a pulmonologist to your treatment team.

Get a baseline pulmonary assessment done and then have a yearly assessment or as recommended.

Try various prescription inhalers until you find one that works for your symptoms; it may be a combination of both short-acting and medium- and long-acting inhalers. You may need to change the combinations over time.

I now also have mild COPD so I use Symbicort -- two puffs twice a day -- to help manage lung inflammation per my pulmonologist’s guidance.

For patients with more advanced breathing conditions, a nebulizer may also bring relief.

Use an inhaler spacer unit so you avoid getting the medicine in your mouth or sprayed on the back of your throat; use especially with those inhaler drug combinations containing steroids.

Rinse your mouth out; quick gargle and spit out several times after using your inhaler to avoid conditions like Thrush (white fuzzy tongue, awful taste in mouth).


Lung Pain

Periodically I have lung pain, which I assume may be related to inflammation of the tissue surrounding the lung or the lung tissue itself. According to my oncologist, the lungs themselves have no nerves but surrounding tissues such as the pleura, may be the source of the occasional pain.



Tylenol takes the edge off.

Avoid NSAIDS, naproxen, Aleve et al as it is contraindicated with several therapies and is more difficult for your liver to process.


Shortness of Breath

Lung cancer itself, possibly through inflammation as well as several cancer treatments, can add to your experiencing shortness of breath. Lung tissue damage, due to the cancer itself as well as inflammation, can also lead to and cause other conditions such as COPD and/or can possibly trigger latent asthma.



Albuterol inhaler (prescription) can help with episodic spasms like shortness of breath. I always carry an inhaler with me.

Longer acting combination inhalers used regularly will help manage this condition.

Keep your house clean, reduce the level of allergens, such as dust, dust mites etc. Vacuum regularly and keep the vacuum bag cleaned out; wash your sheets and bedding regularly. Dust mite protector covers (ie pillow, etc) can make a difference.

Dehydration can also play a role in your feeling short of breath or your heart pounding.

Resting with 3 pillows under head and upper back makes it easier to breathe.

Take a break if you are feeling short of breath; this may mean multiple times in an hour. Be aware of your limitations.






Emotional issues are very real, can be quite challenging and can be triggered by the upheaval already caused by such a serious diagnosis as lung cancer or even by the treatments themselves. It is completely understandable to need assistance, either through a therapist giving guidance or chemical assistance through psychotropic drugs. Any extended feelings of hopelessness, depression, anxiety should be discussed with your physician. You might later be referred to a psychiatrist or psychologist. It’s nothing to be ashamed of; these are very real conditions and reactions that strike many of us trying to juggle so many major and life-altering decisions.


Depression and / or Anxiety

A serious condition like this should not be taken lightly. Talk with your physician for prescriptions and oversight. SSRIs (selective serotonin reuptake inhibitors) are the more common treatments (ie Prozac and many others), but I found a number of them too stimulating (nails on a chalkboard feeling). There are other anxiety/depression agents that can be used and might be effective as well (ie buspirone hydrochloride; Buspar). Trazadone hydrochloride (Deseryl) might help with sleep issues as well as depression as it is suggested to be taken at night. You will probably have to try a number of agents as many seem to have annoying side effects. Be patient as it can take up to and over 60 days before you notice a mood difference and improvement. Caregivers and/or spouses may notice an improvement before you as the patient feels different. In addition, shorter acting agents such as the benzodiazepine class of drugs (ie Xanax, Ativan etc.) can be used to help with situational anxiety as well as other, more anxiety-related issues. I used a psychotropic drug when it was needed and then went off the agent once I was better able to cope.



See your general practitioner, a therapist or psychiatrist.

Try to take it a day at a time.

Don’t let the “What If”  (3 am) heebie jeebies get you down. They’re at their worst in the middle of the night.

Focus on what you do have control over.

Remind yourself of one thing you are thankful for every day, especially on the worst days.


Situational Anxiety (ie before IV infusions)

I naturally have very small veins that collapse and hide. This condition is / was exacerbated by my being given Gemzar,  a more traditional chemotherapy which seemed to have irritated and further negatively affected my vein size. Understandably, I have become a bit anxious after a number of needlestick mishaps. I take a short-acting benzodiazepine prior to when the infusion nurse begins to search for and find a vein to place the IV.



Drink LOTS of fluids prior to your infusion to pump up your veins and help clear the toxins from your system.

Keep warm (wear a sweater, hat, cover extremities, sockies etc.) prior to IV placement.

Take an Ativan (prescription) approximately 15 minutes prior to the nurse placing the IV.

Have nurse wrap your arms with warm, moist towels to relax. This also helps to dilate, raise the veins to the skin surface prior to IV insertion.


Situational Depression (ie post-infusion “blues”)

After certain infusion treatment regimens, especially when immune dampening agents are used (ie steroids et al) to minimize short term side effects, there may be a rebound-like emotional swing resulting in a very blue day or two. Plan on having friends visit or having some low-key distractions to get you through that day. Just remember that this will pass.



Distract yourself.

Play low-key games with friends...or not. Card games, Mexican train / dominoes, Wii games (ie bowling), etc.

Go for a walk, even if it’s only around the block. Believe it or not, you’ll feel better.

Watch uplifting, warm and fuzzy movies: Amalie, Groundhog Day, Cinema Paradiso, Bug’s Life (the “lady” bug), As Good As It Gets (the dog), A Good Year (the music).

Indulge yourself (ie chocolate etc.); no chores, no heavy subjects.

Allow yourself to nap if you need to.

Drink plenty of fluids!





Muscle Cramping / Spasms

After being on several targeted chemotherapies at different times for extended periods, I noticed that I had lower leg spasms, usually at night. They were so severe that I woke up in pain with constricted, lower leg/calf muscles in spasm, as well as my feet, toes curled.



Magnesium over the counter supplements starting with 250 mg daily and increasing to 400 mg daily as needed.  Discuss this addition with your physician. Be aware magnesium may exacerbate or cause diarrhea so start at lower doses to assess its secondary effects.




After taking a triple combination of traditional chemotherapies, a year later I developed osteopenia and then the following year osteoporosis. There may be a correlation; the cause and effect is suspected, but has not yet been proven.



Calcium supplements daily (ideally sourced from plants, not sea shells or rock as formerly living sources are supposed to improve absorption).

Vitamin D-3 daily (ie 5000 IU; ask your doctor for optimal dosage) increases calcium absorption. Important to maintain bone density.

Get a bone scan 1-2 years after you are diagnosed and/or have started cancer treatment.

If you become more at risk, your physician may prescribe a bone maintenance medication that may include treatment by infusion, a subcutaneous injection or oral regimen.





Dry Sinuses / Bloody Nose / Mild Sinus Infection

Certain chemotherapies, as well as some targeted agents, can wreak havoc on your sinuses. Dry and sometimes bloody sinuses may occur while on these treatment agents. Periodically rinsing your sinuses helps soothe them. In addition, using the sinus rinse helps to avoid mild colds, minimizes allergic sinusitis and helps stave off and eradicate mild sinus infections, if the sinus rinse is used judiciously twice a day during early sinus infection onset.



Sinus Rinse: NeilMed (recommended by my pulmonologist; can be used up to 2 times per day).


Post Nasal Drip

Post nasal drip may play a factor in exacerbating your cough.



Sinus Rinse: NeilMed Can be used up to 2 times per day.  This aid made a huge improvement in my cough.

Humidifiers can also bring relief during a rough patch or if you have dry air in your home.

Apply Neosporin on a Q-tip inside your nostrils.



Mouth / Gums:

Your mouth, gums become inflamed more easily. Reduced saliva production also causes overall dryness of the oral tissues and also increases your risk of developing tooth decay.  I increased my visits to the dentist for check-ups and appointments with my dental hygienist (every 4 months) in order to minimize the risk of developing oral infections, inflamed gums, etc. Periodically I suffered from mouth sores.  See your dental hygienist or dentist if you have recurring issues of this nature.



¼ teaspoon baking soda, ⅛ teaspoon salt in 1 cup of warm water; rinse often or gargle. Do not swallow for sore mouth, sore throat.

Use Biotene mouth rinse and chewing gum to help stimulate saliva.

Biotene toothpaste.

Use an ultra soft toothbrush. Allow the brush to dry out between brushings. Wash your toothbrush with a mild soap periodically and change your brush frequently.

Floss or use a small conical brush to clean in between your teeth regularly.

Periogard mouth rinse (chlorhexidine): use after meals and after cleaning teeth if you're undergoing chemotherapy.

Chewing a sugar-free gum can help stimulate saliva.


Mouth Ulcers / Mucositis

Chemotherapies, as well as other treatment approaches, can cause these quite painful conditions and may keep you from eating. The second and third recommendations are first steps and are by prescription. Further aid is available, but you should see a physician / dentist / hygienist to manage these conditions.



Magic Swizzle Sticks from hospital pharmacy.

50% Kaopectate and 50% Benadryl: use as needed 10 minutes prior to eating to relieve oral pain.

2% Viscous Lidocaine and diprehydranine (Benedryl) elixir 12.5 mg and Maalox in three equal measures.


Taste Issues

Refer to section in Digestive / Intestinal Tract / Digestive System





(NOTE: This section may be a little too explicit for some people)

Difficulties Having Sexual Relations

Several of us (women) discovered it was difficult having sex while being treated with certain chemotherapies or targeted treatment regimens. There were a number of reasons causing this issue, let alone desire itself being squelched, but also our vaginal tissue and vaginal walls became thinner, thus causing pain during sex, as well as experiencing vaginal dryness and lack of lubrication. Especially while on a targeted treatment and chemotherapy combination, which I found to be quite drying in all aspects related to the epidermis and skin / tissues, I found having sex to be difficult, painful and stressful for both parties.


This issue may occur with many cancer treatments. Menopause triggered by cancer treatment I’m sure also plays a role in complicating and adding to this issue.  I did find while on a newer mutation specific targeted treatment therapy, some desire did start to return as well as some thickening in my vaginal tissues and a low level of lubrication starting occurring again as my disease became stable and my body and vigor somewhat recovered.  I still rely on many of the suggestions outlined below to help things along.



My gynecologist recommended using a prescription insert called Vagifem (twice weekly) which is a locally placed, low level amount of female hormone. It is not a systemic treatment but helps preserve, maintain and perhaps helps to build up the interior wall thickness to a more normal but still lower level in the vagina which aids pleasure and reduces pain. I use this non systemic alternative as my tumor is slightly female hormone positive according to previously conducted tests.

Foreplay and partner patience is key for a successful and more pleasurable interlude.

Beforehand, if is possible, try to cleanse yourself front and back to minimize the presence of normal flora, bacteria (ie Shower together as foreplay?)

Liberal use of a water based lubrication inside and around the area is highly suggested. Be sure to also lubricate the area at the lower portion of your vagina near the bridge to the anal area as that portion seems to be more delicate and prone to small tears, irritation. Have fun with it, “prime the pump” as they say...

Ask for a larger syringe body (ie approx. 2 inch) and plunger from your GP or OB / GYN and use it to place a portion of lubrication fluid ( ie Astroglide etc.) inside your vagina prior to penetration. (Be careful it doesnt leak out.) Clean your syringe and plunger after each use, inside and out.

Slowly using a long style vibrator or dildo helps open up, stretch the interior of the vagina and dilate your vagina as well and makes way for an easier and less painful penetration by your partner.

Go slowly as your tissues are more delicate and are more likely to tear.

After having sex, pass urine to cleanse the urethra which might help to minimize the occurrence of a urinary tract infection.

It is important to cleanse yourself before and after having sex with a mild soap and water rinse as using a damp cloth might just spread bacteria around the area.

If you dont feel up to having sex, cuddling, back rubs, head rubs, foot rubs, kissing  or caressing sessions are alternatives methods of connecting with your partner . Giving permission to each other for pleasuring him / her is a lovely way to reassure, connect with him as well, as sex and intimacy is often lost in the onslaught of treatment.



Yeast Infection / Bacterial Vaginosis

Yeast infections can occur more frequently as your immune system may be out of kilter. This type of infection may occur even if it isn’t triggered by having sex.



Probiotics may help keep yeast infections at bay in addition to helping keep your gut flora in balance.

It is important to cleanse yourself before and after having sex with a mild soap and water rinse as using a damp cloth might just spread bacteria around the area.

Use condoms when having sex as semen is basic in nature and thus predisposes you to possible bacterial growth

Use a PH balanced lubricant as many lubricants are not PH balanced, which may create a base level more conducive to bacterial growth.

Monistat, over-the-counter treatment, often is effective. Complete the full treatment regimen.

Tea Tree Douche oil helps to provide acidic levels, which help deter bacterial, yeast growth.

Drink cranberry juice, low-sugar version, as the acidic level may help to deter bacterial growth.





Thyroid Gland

After starting traditional chemotherapy my thyroid gland was most likely affected by chemotherapy treatment and thus I later presented issues (ie difficulty sleeping, dry skin, low energy, etc.) and had to take a prescription thyroid supplement. If these symptoms continue and settle into a kind of pattern, contact your general practitioner. Your general practitioner will run a blood test to assess your blood levels. Once treated it can take a month or two before you start noticing alleviation of your symptoms.



Discuss your symptoms with your GP and have a blood test conducted to assess your values.





Dry Eyes

Certain targeted therapies can cause dry eyes.



Use lubricating eye drops 4 times a day or as needed.


Light Sensitivity

Light sensitivity is an ongoing issue, especially with my current mutation targeted therapy, which sometimes makes it difficult to go outside without wearing sunglasses. I periodically notice slight discomfort even when using the screen on my computer. This side effect seems to wax and wane but never completely goes away.



Have several sets of sunglasses available; a set in your car, near the front door, etc. as the light sensitivity can become rather extreme and thus uncomfortable, but it may lessen over time. It does not completely go away, but you may get “used” to it.

Consider using special anti-glare optics or “glasses” to minimize eye sensitivity when using your computer for any length of time.


Visual Disturbance

Periodically I experience an effect similar to looking through a scratched lens, which creates streaking or lines of faint spectrum across and at the periphery of my vision. This is a side effect of a mutation specific targeted therapy. It is more noticeable at night when I am either in the dark and looking into a lighted room or am in a lighted area. It is more of an annoyance but occurs sporadically. In addition, at times I experience an effect similar to a pre-migraine visual disturbance such as having blank spots, aberrations or distortion of my vision. These transient visual distortions pass in approximately 30 minutes, which is also similar to pre-migraine observations.



As of date there is no solution to addressing this mild aberration that seems to occur with this particular targeted therapy treatment.

Until you become aware of how it affects you, be careful about driving at night and when moving in from large differences in light (ie coming inside after being outside).





Be Aware of Food and Other Interactions

Be aware of food and other interactions that might interfere with your treatment regimen.

Supplements, naturally occurring ingestibles, nutraceuticals, and even some foods may interfere with your cancer treatment which may negate its effectiveness, worsen your side effects and/or possibly cause or worsen toxicities. We strongly advise that you discuss ANY supplemental approaches with your oncologist BEFORE you start any “complementary” regimens.


For instance: (this is a limited list of examples)

Anti-oxidants may negate or interfere with your cancer treatment.

Grapefruit juice interferes with many medications.

Calcium, preparations containing calcium, or those used for acid reflux treatment may interfere or negate the effectiveness of your cancer treatment regimen. Time taking these aids well after taking certain targeted oral treatments.

Special diets (ie juicing et al) may negate or interfere with your cancer treatment.


Be Cautious about Medically Unproven Approaches

Be cautious about partaking in any medically unproven approaches that might interfere with your Oncologist’s or physician’s recommended cancer treatment regimen.


Discuss any naturopathic, nutraceutical, homeopathic treatment approaches et al with your Oncologist PRIOR to undertaking these alternatives as these approaches can prove harmful, ineffective, to be a potential waste of your precious disease fighting time and are often time- consuming and expensive. Unfortunately, very few of these approaches, if any, have proven their effectiveness through unbiased, accredited, medically accepted sources or through statistically significant and rigorously designed clinical trials.

Joint Pain
No Appetite
Taste Distortion
Hair Treatments
Split Skin / Fingers
Dry Skin
Face Rash
Fungal Skin Infections
Plugged Pores
Scalp Rash
Healing Issues
Hi Potassium
Liver Tox
Lo Albumin
Lung Pain 2
Short of Breath
Situat Anxiety
Situat Depression
Nasal Drip
Mouth / Gums
Blood Pressure
Lung Pain
Hair Changes
Breathing Issues
Mouth Ulcers
Intimate Relations
Yeast Infection
Anchor 1
Dry eyes
Light Sensitivity
Visual Disturb
Food Interaction
Medically Unproven
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