Chemotherapy Side-Effects

Hi everyone.

Could those of you who are on Chemotherapy please share their experience with us? What are the side-effects? How much does it actually do against the cancer?

We only want to investigate this as part of our decision-making as we still don't know what to do next for my husband. Many people say the side-effects of Chemotherapy are not too bad, many people say they are awful, and some even claim that they have lost their family member not because of the cancer but because of the Chemo. So I was thinking that, by asking the question here, I could get an idea of what is true for the majority of people.

Thanks.

33 Replies

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  • I am just 3 cycles in, I ice my finger and toe nails to prevent the nails from falling off and the peripheral neuropathy, Lots of guys have great response to chemo, at this point it looks like I am getting a small response, but I put it off for 3 years. I think constipation is the main one for me, so day of and for several days after I take a light laxative , no problem. There can be a mouthsore issue, one of the reasons I suck on ice when getting chemo, also a glutamine or just salt mixed with water helps. Sometimes the side effects are not bad at all everyone is different, forever I hear that they are cumulative meaning the more you do the more side effects, not sure about that, maybe others will chime in, s.

    ee the paper I posted on chemo side effects and countermeasures

  • I know I'm not typical, but I had virtually no side effects through my 22 cycles of chemo. I have had some peripheral neuropathy, both soles of the feet and finger tips, and that has been cumulative. Light constipation for a couple of days early in each cycle. The only real problem I had was during the first cycle when my whistle blood cell count dropped to almost zero, but for all subsequent cycles I had Neulasta, and that resolved the problem. Good luck with this difficult decision.

  • Had 15 infusìns before failure main side effect was fatigue although still managed to play some golf so it was worth it now on xtandi and psa is 0.045

  • I am fascinated by the numbers. I was given ten cycles, no probs and worked. Asked for more cycles but was refused as my body would start rejecting or would kill me. Then 5 months off and now Zytiga, PSA now 0.030. Pre chemo 200. Mets 90% gone from 40 bones plus lymphs. Maybe more chemo quicker relief.

  • May I ask what chemo drug you used? Thanks

  • Docetaxel at Charing Cross hospital London

  • Thank you. That is what my dad is on so giving me hope. 🙏🏻

  • If it helps I am seventy one. Finished my ten cycles May ten last year. Then nil treatment except Zoladex (since Jan twenty fifteen) and still on it..Zytiga since Sept last year. Sorry for using words not numbers for dates but dropped phone.

  • Taxotere if in USA. David

  • Let's see....

    I'm 50, diagnosed at 44, surgery and radiation then reoccurance. I finished 9 cycles of taxotere in December. The main problem was probably disruption of my life. Plenty of side effects- not necessarily bad. The expected problems, with fatigue the worst part. Hair loss, trouble sleeping, acid reflux, comprised taste buds, lots of general pain (pain killers and muscle relaxants highly recommended). I didn't experience any neuropathy. Low white blood cells (neulasta is awful. But it works.)

    Chemo was hard. But, I have no detectable psa amd my tumors have disappeared. I know peiple who.died from chemo, but far more who died from cancer. I'm glad I did it, so far.

    Good luck, I hope this helps. It is a big decision. Find a really good oncologist.

    Bill

  • I have completed 7 sessions of Docetaxel at 21 day intervals. I have 1 session to go.

    The side effects are manageable, the main side effects I found were loss of appetite, horrible taste in my mouth, food tastes different, fatigue (gets more as the number of sessions), arms and legs very easily bruise, any injury takes a long time to heal, shortness of breath, and since session 5 I have fluid in my feet ankles and lower legs.

    I did have my dose altered after session 1 because of issues which put me back in hospital for 4 days on a drip.

    However, at the end of the day the chemo has dropped my PSA from 62 to 8.1 after 3 sessions. I am awaiting new blood results, CT scan and Bone scan.

    Overall the chemo hasn't been too bad.

    Hope this helps.

  • Sorry, it's me again guys. Ten cycles of chemo nil problems over8 months. Now have neuropathy but manageable without pills. Obviously every hair on my body disappeared. Mostly back but now white.

    Look up side effects on drug website. I complained to my Onco that Docetaxel wasn't working. I had only recorded 3 of the sixty something s.e.'s on the website. Also key in the search box on this site 'chemotherapy' and get a very balanced view across all who have responded. May I suggest that as a medic you can over search? You wouldn't want a patient with a list of say 200 questions that you have probably already answered. No disrespect. David

  • Everyone reacts different to all chemo .if your oncologist facility is good they can hydrate the person (give IVs) for a few days after so that the side effects are less...in the end --I lost my husband to the side effects from the treatment ..everyday is a gift ..fight it .never give up hope

  • I hope I might shed some light on the subject without disappointment as after effects of chemo can be some what difficult. More rewarding for some not so for others.

    Fatigue can be worked through,

    The infusions "I had five of six" took an hour at most my wife insisted I wrap my hands and feet in ice,

    Knowing that hair loss was eminent I was still upset however at the first sign I took my hair Cutter and gave myself a buzz which turned out to be in style go figure.

    I was lucky to stay home while undergoing therapy

    I would wake at 6:30 see my wife off to work make the bed vacuum the house clean the windows do gardening make and have lunch with my dog then around 3pm take a well deserved nap waking after my wife came home it became routine for the duration of chemo

    After effects unfortunately unbeknown to me were chemical neuropathy to my feet that have yet to dissipate some forgetfulness and tiredness or fatigue

    I am back to golfing and doing well considering

    Now for "MY" results not to say it's in all cases

    I knew it was a last ditch effort for me and as I had gone through many challenges with this stubborn affliction returning at a rate of about every 12~18 months for nearly 10 years chemo was a finality so I thought, but again a rising PSA has shown that not to be. I now am in a trial and doing well not looking for a cure but living with a disease not unlike diabetes taking Meds living life not becoming enveloped, as I have cancer I am not cancer I have diabetes I am not a diabetic I live every day love my wife my children my grandchildren at 65 I feel I'm a long way off to that next place.

    Best of luck. There is always something new to try always hope for the future enjoy what you have what you are what you'll become.

  • I had minimal chemo prior to radiation treatment, 6-8 infusions, nausea was my biggest issue. That was handled pretty well with meds. On the other hand my wife went through every known side effect of chemo. The only thing that helped with nausea (she wasn't able to hold down a sip of water) was cannabis. Although illegal where we lived at the time, I got plenty. She was unable to smoke, so I made a tea of it, it tasted bad but it worked. She would become so dehydrated that they would put off chemo and hydrate her with IV. She told me in the afternoon "I'm tired of this crap" 1 AM the next morning, I got the call from the hospital.

    In my layman's opinion, I think chemo is the last resort of curative treatment. Anything else is probably paliative.

  • It doesn't tell you much what the folks here have experienced. A group this small is just a collection of anecdotal experiences, which do not predict the next person's response. Your brief post covered the range, as some people (not MEN ... PEOPLE, as it applies to breast cancer chemo, too.) Some people have almost no side effects, others' SEs are so horrible they chose death instead. (The same goes for ADT/hormone therapy). The list of SEs fills a page, their likelihoods range from <0.10 (aka <10%) to virtually certain (well over 0.9 aka 90%), their appearance timing ranges from minutes after the first infusion to months or even years after completing chemo, their reversibility from days to decades if at all, their target from feet (most patients, sometimes loss of every sensation except pain ... lots of it, especially if their oncologist and the patient allow it to get that far; I will abandon chemo if I start getting peripheral neuropathy) to brain function (most people, quite often to the point they can't take care of themselves), and much more. You can find many discussions of chemo SEs, their likelihoods, and their remedies (mostly futile) by Googling the subject, including at some point the studies STAMPEDE, CHAARTED (not a typo), and GETUG AFU-15. The good souls here will offer a lot of experiences and encouragement, but your real decision fodder will be found in the published literature, from books to peer-reviewed studies.

    An excellent book on the practical aspects of chemotherapy is "The Chemotherapy Survival Guide" by McKay and Schacher. It doesn't address whether to accept chemo, but it NAILS dealing with it.

    A friend is getting almost every SE in the many books on the topic with just his first chemo treatment; I'm getting none as I enter my second month. That's partly luck, partly because I went into chemo in excellent condition and continue to play and work out hard, and partly (maybe largely) because I chose a PC clinic well known for producing better outcomes and fewer SES than the vast majority of medical oncologists do. That 75 mg dose of Taxotere can be unnecessarily brutal.

    The REAL issue is when/where/why in his cancer journey he is considering chemotherapy. With SEs like that on the menu, the expected benefit is beyond critical to the decision; it's virtually everything (after all, we can obviously quit chemo at any time ... good enough unless that first infusion disconnects the patient's prefrontal cortex, as it often does). Until just two years ago, chemo was believed to be fairly pointless for PC patients. New studies changed that paradigm in 2015, but it's still far from being a no-brainer. The first question to answer remains the benefit an individual patient can expect, based on his unique disease stage. Those three studies mentioned above discuss that.

  • I don't need chemo now but if I ever do, I'm going to wrack my brain to try to remember your recommendation of "The Chemotherapy Survival Guide" by McKay and Schacher, or some equivalent. And I'm going to read it before I meet with the oncologist to plan the infusions.

    Alan

  • Good idea. It was strange how often I encountered a thorough discussion in the book just after I encountered the issue. Reading it in advance will obviate many questions an oncologist will have neither the time nor the knowledge to answer because they foist this stuff on their nurses and the patients' PCPs.

  • I'll second that notion and hope that I won't need chemo. Best wishes to all who have to endure it.

  • Please tell me which clinic you used! Thanks.

  • Drs. Leibowitz and Eshaghian at Compassionate Oncology in Los Angeles. They are one to two decades ahead of most of the big national cancer clinics (e.g., Johns Hopkins and Seattle's Fred Hutch are just now experimenting with some of the protocols Leibowitz has been using since the '90s when he patented them) partly because the big centers wait for huge, prolonged trials to do their experimenting (thinking?) for them, while Leibowitz stays a step or three ahead of them through various means. As I've recommended many times here, everyone concerned about prostate cancer (that's all those two treat) should consider spending a few days at CO's website; it will take them that much time to digest it all. I fly to LA for the first low-dose infusion each month, then my local (7 minutes from home) medical oncologist infuses the 2nd and 3rd low doses the following two weeks for the same monthly dose everyone else gets all at once. Google Leibowitz's Three-Pronged Protocol.

  • was using taxotere for seven cycles until it stopped being effective I switched over to Jevtana the only other chemo available to me I have had two cycles of Jevtana, I have all the side effects but they are manageable, worst being constipation, take a laxative for a few days after treatment

    drink a lot of water, eat fruits, yogurt , soft bland food is good, watch your temperature, don't get a fever if you get a fever go to hospital, rest ,

    my psa is now at ( 6 ) I am 59yr been fighting for six years.

    peace and love to all, keep fighting

    jack

  • I have had 1 round of Docetaxel, with the second in a week or so (6 rounds all up). During the infusion I had no issues. The afternoon of the infusion I had a little fatigue and just felt rough. The day after the infusion, I felt OK, but my brain was a bit foggy. The infusion was on a Wednesday, the Saturday following was the worst. I was heavily fatigued (fell asleep several times watching TV). By the Sunday, then the Monday, I was feeling pretty OK. The other side effects I had were: night sweats, irritability sleeping (first night only). I've had a bit of trouble with appetite, I normally have a healthy appetite, but I find myself getting halfway through a meal and stopping. I also have a bit of brain fog. I can still function at a high level, but I'm nt as fast or as with it as I normally am.I have had a lot of pain down my back, sides and under my arms, I figure that's lymph nodes being aggravated by the chemo. I was always very reluctant to use chemo, but after lots of research, I decided it made sense for me, while I'm young, relatively fit and healthy (I've just turned 50).

  • Are you staying off work the whole time. My husbands doctor says he can't work, but I know he's going to hate that part. He starts chemo on 4/19

  • I have continued working full time and I intend to do so throughout the chemo. I did have the day of the infusion off and I also had the following Monday off due to fatigue. Next round, I will have off the day of infusion, but try to go to work every other day. I find work reasonably therapeutic as it takes my mind off the disease.

  • May I ask what type of work you do? My husband interacts a lot with the public so I'm worried the threat of germs could be an issue.

  • I am a Financial Adviser, so I work in an office in the city. I'm not too concerned about germs, they told me my white blood cells count would be very low 7 to 10 days after the infusion, then it would recover before the next infusion. The Dr told me to go about my normal business and don't change anything. He said I should go to the hospital if I get a fever of 38 degrees or higher.

  • Hi everyone.

    Thank you so much for all your posts. My husband and I are very touched by this and we will take time to read all the posts carefully. I thought it would be easier to send a general "thank you" to all of you rather than replying to every single post which would make the thread very long.

    I would also like to say that, while we do know of course that the side-effects of Chemotherapy are different for everyone and that this is only a small number of those who are receiving Chemotherapy today, we feel that it is very helpful to hear from people about their experience because it gives a somewhat clearer picture of what to expect when going for this treatment. I personally find it easier to gather information this way than by reading studies with lots of figures. Here we are talking to "real people" about their "real experiences".

    One thing we gather from the posts so far is that, while side-effects do occur in varying degrees, they are most of the time quite managable and can be treated. But, as I say, we will have to read everything more carefully.

    Thank you all again!

    Mel.

  • Forgive me but I have to ask , given the SEs is chemo worth going through? Does it really extend life enough to be worth going through? Do you use it after everything else fails ?

    Bob

  • From what I have read Docetaxel, by itself increases survival by about 4 months, but when taken early, with ADT the survival benefit is 17 months. I made the judgment call that since I am still hormone sensitive, that taking the chemo now made sense. I've just turned 50 and I'm in pretty good shape.

  • I'm 73 and also in good shape. I've been on ADT( Lupron, bicalutamide and avodart) . I'm now on avodart and finasteride plus metformin and other drugs helpful to PCa allegedly. Waiting till PSA increases to 2.0 to get axumin or other advanced CT pet scan . I may get SBRT if I have a few mets. My last scans showed no mets but PSA is rising. My next HT will be Xtandi or Zytiga I'm told. I've not been told that chemo is appropriate now. I must say I'm not looking forward to it. I love being active play golf 3-4 x per week . Living without being active would be a serious drag for me. But maybe I'd adjust like I have for everything else that came along like major depression which is long gone , complete ED and multiple ortho surgeries.

  • A lot depends on the agent, dose, age, and strength of body.

    The chemo treatment which I had thirteen years lasted for six months as follows:

    Each course of chemotherapy lasts for 8 weeks. Patients were treated in weeks 1, 3, and 5 with doxorubicin 20 mg/m2 as a 24-hour intravenous infusion on the first day of every week in combination with ketoconazole 400 mg orally 3 times a day daily for 7 days. In weeks 2, 4, and 6, treatment consisted of paclitaxel 100 mg/m2 intravenously on the first day of every week in combination with estramustine 280 mg orally 3 times a day for 7 days. Plus 30mg of Prednisone a day (20 mg & 10mgs) and 1000 mgs of Vitamin C twice a day for six months. And a 90 day injection of either Eligard or Lupron for six years.

    Side effects mild. Hair thinned and curly straightened. :) Toe and finger nails brittle. Very light occasional neuropathy on soles of feet. Took Zofran for nausea for two days during the 24 hour infusion. Stayed out of the Texas sun as much as possible as I was also hot. Zero problems driving 70 miles roundtrip for infusions. One of the other patients also drove himself 220 miles roundtrip. No episodes of chemo-fog. I worked three days a week average 5 hours a day.

    Result: Went from 7 (4+3), 32.4 PSAS, and mets to L2 & T3 of the spine to PSA of <0.1 or undetectable even after stopping hormone injections seven years ago. For past five years, I have used 4 mgs of Androgen every three days to maintain Testosterone level between 400 and 550.

    I believe that the key is to aggressive attack with chemo as soon as mets are discovered while your body is strong and not weakened by cancer; and the tumor burden is low. The only way to systemically kill cancer cells floating around in your vascular and lymph systems is via chemo infusion.

    Gourd Dancer

  • Hi everyone.

    Thank you so much again for all your replies. Much appreciated.

    We read all the replies carefully.

    We have also postponed our appointment with Paul's oncologist to the beginning of May as we still haven't heard back from the hospital in Germany and LU-177. This is good because until then we can at least get one more PSA-test done as well. We will keep you posted.

    Mel.

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