My wife, 57 and a non smoker, got diagnosed last summer with Shane four NSCLC mesothelioma. The dr at Penn got her on Keytruda, Alimta, carboplatin...which worked for 6 months. But her foundation one has no biomoarkers for targeted therapy.
Monday she starts a very powerful, and thus deadly and rife with nasty side effects, chemo — taxane and Avastin and one other. I am scared of how to help her and feel I need ANY advice on tips to manage or even what to expect
How do I handle the vomiting, diarrehia.? What foods does she eat when she has no appetite? Does (legalized) pot help? It’s legal here.
How and how long do these side effects manifest? Taxane is nasty as is Avastin. I am scared, truly scared.
Please any homespun advice is highly appreciated., people who have gone through this know best...I need you help.
Alfred
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Alman1958
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When I was going through chemo (I had squamous cell lung cancer), on the days I really could not eat, I would have a milkshake or two, or if that was to heavy for my stomach, I would drink Boost. That stuff is not inexpensive, but it has needed vitamins and protein.
As for pot, it could help, at least with the appetite. I know someone with lupus, she does the brownies and they help her manage her symptoms. I also knew someone who had cancer and worked full time, went to school part time, and underwent chemo. She used the oil (CBD oil). Medical marijuana was not legal here, so she purchased the oil on line. You would not have known she was going through chemo if she didn't tell you. So I know, at least for her, the oil helped tremendously with the side effects.
I hope I have helped at least a little. Keep in touch, let me know how you are both doing.
I can’t speak to the third drug your wife will be on and it’s side effects, or the combined side effects of all three, but I do have experience with Docetaxel, which is a taxane and Ramucirumab, a anti-angiogenesis like Avastin. My side effects were different than when I was on Carbo/Alimta and for me, the side effects have been easier. Loss of hair, nosebleeds, mouth and tongue sores, loss of taste, mild fatigue and mild neuropathy have been the most noticeable. My neutrophils would drop and we had to delay treatment by a week but this only happed twice in 16 rounds.
For side effects, I do acupuncture once per week, massage every 3 weeks, meditation, exercise, and supportive supplements every day including edible marijuana at night to help me sleep. I have had very little nausea with the treatment but we are all different. If you decide to add supplements make sure you let her doc know.
I was afraid of the the side effects as well but was on this treatment for one year with great results. We dropped the Taxotere 10 weeks ago and side effects are even less. I understand that there might be latent effects that could come up later.
Wishing your wife success with treatment, she’s lucky to have you as her caregiver. I give thanks for my husband every single day. Please let us know how it goes.
I started weekly acupuncture right after I was diagnosed and haven’t had the neuropathy issues that others have experienced so I would say yes, acupuncture has been a significantly beneficial complementary treatment in regards to neuropathy. I get occasional shooting pains but nothing that lasts and has never slowed my down. Acupuncture also works great for nausea. B12 for neuropathy as well. 🙂
Home spun is my ballgame. I am 69 and have been through radiation to the head and chemo since Dec 2017. If you can find my old blogs the advice is all in there but I will include a concise summary. FYI I have non small cell lung cancer, also not caused by smoking. The VA says it's from exposure to agent orange from my tour in Vietnam in the army. If constipation is the problem take 2 docussate s pills the same day as your chemo. I occasionally take a cbd oil + thc but am not sure if it has any effect on anything. Eating is sometimes a problem and I have lost over 15 pounds and a lot of muscle. Here are some food ideas that worked for me: old style oatmeal with cut up apple chunks, grape juice from frozen concentrate,Welsh's, Pioneer Woman's hamburger soup, Werthers hard candy, Oreo thin cookies, White cheddar cheese its, Top Raman soup, Noodles restaurant spicy Korean and pad tie with chicken. Check back with me if I can be any more help and GOOD LUCK to you all !
I am sorry to hear that your wife has to move on to a new treatment, and have been there myself as a Stage IV NSCLC patient.
Hopefully, the side effects of the chemo meds will NOT be nearly as "awful" as you are fearing. I was not on that combo, but did find the the side effects were not nearly as harsh as I was expecting. We are all different and react in different ways, hopefully if she did well with the Carbo and Alimta, she can tolerate this combo now too. That is the combo that I was one and it was much easier than I ever expected. I think chemo sometimes has bad name from the harsh drugs used years ago. Many of the newer chemo meds are much better tolerated now. At the time they also had me on B12 injections, steroids and Folic Acid and I do think the Steroids helped with the side effects.
I did have some nausea and for that I took Zofran. I typically felt okay for the first couple of day and then on Day 4 the fatigue and nausea would hit and I would need to drink more fluids and rest more. On the worst days I did not have much appetite and drank smoothies that we made using fresh fruits/veggies. You can also add protein power (health store) to them, if needed. I usually only felt really lousy for about 2 days and it would improve each day. I drank a lot of water too to keep well hydrated. I never vomited or had diarrhea while on chemo.
I wish her the very best and hope she'll find the chemo is much more tolerable then you think.
That was very helpful. Very. I'll look up Zofran, don't know it. she did the steroids, Folic, etc...the steroid gave her an energy jolt. You sound like you are doing well; I hope that is the case.
If there is anything I can help you with, feel free to ask
Of course, this is a very frightening time because every new treatment is another voyage into the unknown. Many of us have been there, dealing with the uncertainties after having had a good run where we pretty much knew and understood what our bodies were going through with each cycle. I'm sorry that you and your wife are forced to confront this again, but you will find your groove soon and you will be able to deal with the side-effects that come with this new cocktail.
Remember that with the advice you get here, every patient is different. None of us react exactly the same way, even to the same combination of drugs. But take heart in that each of us, regardless of our treatments, has found ways to deal with our side-effects and continue living life as best we can. There is a lot of fearmongering that goes around regarding every form of chemo out there and most of it is highly exaggerated. You both have been through this already -- perhaps this next version will be worse in some ways, perhaps less so in others. And while all the drugs involved in chemo could be deemed "nasty," that means a lot of different things to a lot of different people, and there are many, many levels of nasty that might be referred to.
First and foremost, talk with your oncologist about what plans can be made for any foreseeable side-effects. Usually, you will be able to get prescriptions for anti-nausea meds right away. Use the recommended medications and see how they work before going off and trying something else -- oftentimes there is a reason that certain medications are recommended, and that is generally because they are known to play nice with the other drugs. When you get into supplements and herbs and things it is ESSENTIAL that you run them by your oncologist BEFORE trying them. Some vitamins, for instance, prevent some chemo drugs from working properly. And some herbs can actually make you sicker or cause reactions from certain drugs. That chamomile tea people recommend to help you relax and go to sleep is potentially harmful in the wrong combination, so always check.
That said, not everyone is going to react well to the usual drugs that are used to mitigate side-effects, or your wife might not like the way those drugs make her feel. It is okay to let your oncologist know and find out if there are other drugs to try that do the same thing. There often are. But if she does not like any of those, then looking into herbal or food-based options might offer some other possibilities -- just realize that most of them might not have very strong responses. Medical cannabis is one of those exceptions because it is a real drug and it is available in many formulations. I don't personally find it that effective for everything that it is claimed to help with, but it can be a great sleep aid (especially if you are focusing on the THC -- CBD does not help me with sleep at all, but I have heard otherwise from other patients). IF you are going to try cannabis, it is a very good idea to see if your oncologist or the hospital has a relationship with any medical cannabis supplier or consultants. Surprisingly, they often do, at least in states where it is legal. At the very least, make sure your oncologist knows you want to try this route.
The good news is that THC and CBD are generally okay to take with other medications, primarily, I am guessing, because they have no effect on the respiratory system. It is still important to make sure they are not going to react with your current medications, however. If cleared to try it, medical cannabis MIGHT help with nausea, increasing appetite, better sleep, lessening pain or spasming muscles, reducing anxiety, and probably a few other things I can't think of right now. Sleep and appetite might be the most important things you will be looking for help with coming up, and for those you probably want something high in THC. My understanding is that you want something that can be absorbed sublingually -- like a tincture or a mint that you hold under your tongue. Getting the drug directly into the bloodstream through the mouth will do two important things: one, it will do the job more quickly, and two, there will be less of a psychoactive effect. When you swallow cannabis products, they metabolize in the liver and take a couple of hours to become noticeable and they also change chemically to become more psychoactive (for THC only). Sublingual ingestion, on the other hand, can get to work within fifteen minutes, which is important if you are dealing with nausea or you want to get to sleep quickly. There is a synthetic version of THC available in capsules that your oncologist can prescribe as well, called Marinol. It is frequently used to deal with nausea and appetite stimulation and, as far as swallowed THC goes, I think it is fairly effective and maybe even better than the real thing. But it is ONLY the THC, with none of the other hundreds of chemical components potentially found in medical cannabis.
When you are dealing with food and appetite, remember that everyone is different and therefore experimentation is key. Don't be afraid to try new things. And don't get hung up on any particular diet. Focus on calories first, nutritional density second. When I was on chemo, I had to eat steaks in order to keep my energy up and my weight on -- nothing else seemed to work. I could never have survived on green smoothies. And when my sense of taste changed, I had to work on new combinations of spices and different recipes to keep things edible. I began to incorporate lots and lots of bitter foods that might have been too much for people whose taste buds worked properly, but it worked for me. The key is to get your wife to participate in a tasting adventure. Try keeping it light, make it fun to find things that taste good, and if you can make games out of more things then more power to you. If she likes desserts, then go for it. Pile on the whipped cream and if you get a few berries in the mix, then great. It does not really matter where you manage to get the calories as long as you get them. If solid food is a problem, especially if there are mouth sores, then get that blender working and have fun.
Folic acid is important to prevent or mitigate neuropathy. She will probably be getting B12 shots and maybe Xgeva shots for bone strength. Find out about any potential vitamin deficiencies, but in general stay away from supplements without oncologist approval. In all honesty, supplements are generally unnecessary unless there is a deficiency. Vitamin D may be a concern, calcium may be a concern, but there are also things like potassium that she might have too much of already, so just get an idea from her doctor first.
Then get ready to roll with this. It will take a month or two before you really know what you are dealing with, anyway, since most side-effects are cumulative. Keeping a journal helps, too. For me, steroids caused more side-effects than they helped, and I found that I slept much better once I cut them way back -- but I only could do that because I wasn't suffering from difficulty tolerating my chemo. Not everyone can reduce their steroids. Keeping a journal will help in discussions with your oncologist, though. And see if your insurance covers a palliative care specialist. This is increasingly common and many patients have no idea what that is even for. Palliative care is just about help with your side-effects, really, so get that referral and visit the palliative care specialist.
As for massage and acupuncture and any of that stuff, if your wife likes it, take her for it. Some hospitals or clinics offer it as part of the care. There is no reason not to try it, but it is the sort of thing that only helps some patients, and generally, it only helps those who believe it is going to help before they even try it. That is to say, if she wants to try it, by all means, do. At the very least, it will be relaxing, and at this point, I think that is something we all need.
Jeffrey, even though I empathize with you on the majority of what you say in your comment (and yes, I also read your blog), I take offense to your statement regarding massage and acupuncture - which you stated as fact : "....and generally, it only helps those who believe it is going to help before they even try it." As a practicing licensed massage therapist specializing in chronic pain and trauma recovery for 26 years, I had hundreds of people walk in to my office NOT believing that what I could offer would help. Not all, but most of those 'non-believers' walked out of my office feeling better and routine massage therapy became part of their treatment plan. This is why I remained in practice for so long, because people experienced relief, no matter what their belief was before they began treatment. Maybe I am reading too much in between the lines, but I fought along with many others to bring therapeutic massage out of the shadows and advocated for research that shows true, documented therapeutic benefits. Should our oncology team be onboard with our desire to seek out complementary treatments, most definitely! But your statement delegating acupuncture and massage therapy to the ranks of - it only works if you believe it does - could potentially stop some from seeking out and benefiting from these treatments. And your statement is false.
That's my opinion on ".... massage and acupuncture and any of that stuff...".
Here is the latest from ASCO in regards to complementary treatments in specifically, breast cancer. That I know of, this is the first time that ASCO as an organization, has recognized the use of complementary therapies.
First of all, I sincerely apologize if I offended you with my remarks. That is the last thing I would want to do. I don't lack respect for the good that is often accomplished through massage and even acupuncture.
In my defense, not that it is very good, but I was quite uncomfortable when I was writing this and you may have noticed that I get a bit long-winded, so I was trying to wind it up quickly and did not choose the best words nor take the time to re-read it before hitting the button to post the comments. It does not read well and it does not fully convey my intent.
Massage is a particularly useful tool, especially under skillful hands. It can be more than merely therapeutic, as it may also benefit overall lymphatic health. I remain skeptical about acupuncture; having tried it and researched it, I could find no scientific basis for it to work and can say I felt no benefit (though I did expect some when I went). My wife, on the other hand, truly believes acupuncture does amazing things for her. I cannot completely discount it outright, but I caution people to put too much stock in practices that are not medically proven when it comes to "curative" promises, which are often found alongside acupuncture -- but not, of course, massage.
I hope that helps clarify my poor choice of words and also why I was being cautionary. I truly do believe that people should try more of these therapies of they think they will help. But I want patients to understand the limits of any claims that are made by practitioners, that is all. Probably wasn't the right thread to go down that slippery slope with. I beg your forgiveness on this one.
Apology accepted. I am sorry that you weren't feeling well and I know that I myself have issues with getting my own thoughts across, especially when I'm dealing with chemo fog. Your blog writings have helped clarify the dangers of engaging in treatments that are controversial at best and extremely dangerous at their worst and I thank you for the hours of research and writing you have contributed in this regard. The slippery slope in my opinion, is throwing the baby out with the bathwater. I was not suggesting that acupuncture was 'curative' but that it has been beneficial for me and sharing and supporting is what I need from forums such as this. We are all in this together and I thank you for engaging in this conversation. As I said before, I truly wish you all the best and I continue to follow and support your path.
No, thank you, I found it elucidating. And passion is always a virtue. You have both been helpful. I am speaking to my acupuncturist about neuropathy management.
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