• Permanent side effects from chemo

    Asked by Jenann on Monday, June 18, 2018

    Permanent side effects from chemo

    Does anyone know of any research studies regarding what percentage of chemo patients end up with permanent side effects from chemo ? I’m terrified of ending up physically or mentally disabled from chemo. My mother had a stroke when I was 13 and suffered from that for 26 years until she died last year. I’m willing to deal with the short term effects but having an extremely hard time accepting putting that Poisen in my body. I had/ have stage 1 breast cancer, infiltrating ductal carcinoma, grade 2, progesterone and estrogen positive, her2 negative, brca negative. I had lumpectomy but margin was positive after so had mastectomy. I was supposed to start chemo today but instead I’m having information meeting with my oncologist tomorrow. Oncologist hasn’t answered all my questions yet and I’m not sure I can proceed with chemo until I know statistically speaking, what my odds are of ending up with some sort of permanent disability. Quality of life is important to me. Any input is appreciated!

    29 Answers from the Community

    29 answers
    • JaneA's Avatar
      JaneA

      I didn't have breast cancer, but I had Stage IV rectal cancer, and I had very strong chemo so that I had a chance to stay alive.

      Every person reacts to chemo differently. I experienced the usual fatigue and high blood pressure from the targeted therapy drug, Avastin.

      I don't have any long term effects that are significant. I occasionally forget a word, but who's to say whether that is chemo or getting older? Best wishes - try to relax and not worry.

      3 months ago
    • Jenann's Avatar
      Jenann

      JaneA, thank you for your response, I appreciate it. I wish you the very best! God bless you!

      3 months ago
    • lh25's Avatar
      lh25

      I don't have any long-term effects from my chemo. It was XXX to go through, but worth it for me.

      3 months ago
    • geekling's Avatar
      geekling

      I have long term effects from a chemotherapy which pretty well took away a bunch of IQ points and turned an eidetic memory into much much less.

      Find out what the doc wants you to take and do some research along with asking your questions. Get spelling right along with details and odds, if possible.

      Other than that, offer up your phone number and ask to speak with 2 patients who have similar diagnosis & can confirm that the side effects go away soon after treatment.

      Think about what you might actually be willing to trade for your life.

      Good luck.

      3 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      You can hear all of the stats, I am afraid, and still not know how you personally will react to the treatment. I SHOULD have lost my hair when I first had chemo, but I didn't. On the other hand, I should NOT have been as sick as I was (just throwing up, etc. - all very temporary), but none of the anti-nausea medications we tried worked for me. They worked for lots of other people, but not me.

      I haven't had long term side effects from my first-line chemo treatment (Avastin, Alimta, and carboplatin). I haven't had much in the way of side effects from radiation either, but some do. I seem to have developed neuropathy in one finger ... which is sort of weird, but ...

      I've been on immunotherapy for 5 years and have had few side effects, though one that is long-term is that my thyroid quit working properly. (Not a big deal - I take a pill for it every day).

      I am like you - quality over quantity ... but, unfortunately, there are just no guarantees about what treatments will deliver quality and which ones will result in long-lasting side effects.

      Good luck!! I sure hope your oncologist can ease some of your fears. Please let us know what you decide.

      3 months ago
    • GregP_WN's Avatar
      GregP_WN

      I had chemo twice once in 88 and again in 89 for a recurrence. Two different types of chemo ABVD and MOPP. That was 30 years ago and I can't really say I have any long term physical issues at all. I spent 18 years after I was done with treatment going on with life like nothing had happened. Then 10 years ago, I had a 3rd diagnosis, this time a different type, tonsil cancer. I had radiation and surgery only this time. The radiation has left me with several long term side effects that will never leave me. I lost all my teeth, due to radiation to the jaw/neck area. I have radiation ocluded arteries in my neck, one caused me to have a TIA a few years ago. I have an Occluded esophagus from the radiation, but that was recently eased with a stretching.

      So knowing that, would I do it again? In a heartbeat!! The survival rate for head and neck cancer for a 48 year old was less than 50%, 5 year survival rate was less than that. I am at the 10 year mark. I have issues swallwing, talking, chewing with dentures, but it's better than the alternative. Doing nothing would have most surely put me in a box 6 feet under. No chewing, talking or swallowing to worry about at that point.

      You are stage I, there has been a lot of press lately about a study showing that many women that are stage O or stage I don't have to have chemo. Ask them about that study and what, if anything, puts you into a category above that.

      We wish you the best, please let us know what you choose and why, your information will help others that try to make the same decision.

      3 months ago
    • IKickedIt's Avatar
      IKickedIt

      I had Stage III colon cancer and went through a very strong treatment which was difficult, but doable. I do have some permanent side effects, but I would do it all over again, if need be, because I am 6+ years cancer-free.

      Most of the problems I encountered during treatment resolved. The few permanent problems have forced me to modify some activities, but I've adjusted and learned to accept these new limitations. But what is more important is being alive to be with my family and friends. And in reality, I live a fairly "normal" lifestyle. It's just learning to accept the "new" normal which has been difficult.

      Again, however, I would go through the same treatment again.

      The most important thing you can do is discuss every single side effect with your doctor. Keep a journal and document everything. Treatments can sometimes be modified to lessen the effects of certain drugs.

      3 months ago
    • LiveWithCancer's Avatar
    • Jenann's Avatar
      Jenann

      Thank you to all who provided their input, I read all the articles/links attached and was able to get further clarification. I’ll be posting an update tomorrow after my meeting with oncologist.

      3 months ago
    • lujos' Avatar
      lujos

      Hi there! I was treated for stage IIb IBC, with lymph node involvement. Had strong ACT chemo plus rads and now letrozole. I still have neuropathy in both lower legs from the taxol, plus various issues from letrozole. Would do it all again for sure!

      Do ask your doc about the latest news on treating early stage bc, don’t know all your particulars, but you might well fit into the ‘no chemo’ group.

      Good luck, and if you do need chemo, don’t be afraid, it’s better than the alternative! ;-)

      3 months ago
    • ChildOfGod4570's Avatar
      ChildOfGod4570

      Believe me, I know all too well how it is to dread chemo and the possibility of side effects, let alone permanent ones. I reviled the idea of deliberately putting poison into me, but the oncologist said I had no choice. Thankfully to God Himself, I made it through. OK, I did have my fair share of the adult version of the temper tantrum and tried every question in the book to get out of having the infusions. Though I, a person who favors quality of life over quantity of life, hated chemo with the heat of ten thousand suns, I went through the treatments and did relatively well after certain precautions were put in place. Because I am very sensitive to drugs, my treatments were modified: steroids, Neulasta shots, and reduced concentration of the chemo drugs. I lost most of my hair but not all of it; I *never* threw up; and the doc said I was handling treatment well in that side effects lessened with precautions in place. Once chemo was over, my hair started filling in inside of a month, and I was able to leave my wig at home 3 months after my last infusion. My tip is to ask your oncologist exactly what side effects he or she thinks you will have and the odds any of them would be permanent. I have a friend who had chemo for Colon cancer and required chemo. It caused him neuropathy in his hands, very debilitating for a blind teacher who needs to read Braille. He asked if the neuropathy would be permanent if he kept up his treatments, and when the doc said it could, he refused to take the risk and stopped treatments right away. Today, he is about 4 years NED! I hope your appointment goes well tomorrow. God willing, these new studies will show you don’t need chemo after all. HUGS and God bless.

      3 months ago
    • msesq's Avatar
      msesq

      I had TCH for HERS2+ breast cancer. The only lingering effects of chemo are a difference between the eyebrow hair and eyelashes on the left side ( the side with cancer). A very minor problem.

      3 months ago
    • Judytjab's Avatar
      Judytjab

      I had stage 1, HER2 neg, ER and PR positive breast cancer and did not have to have chemo. They’re saying in the news that early stage cancer may not need chemo. Please ask your Dr about this. I also had an Oncodx test which tells you what your chances are for recurrence. Ask your Oncologist about that test. It may determine whether you need chemo or not. Wishing you luck and let us know what you find out. Hugs to you.

      3 months ago
    • Maryflier's Avatar
      Maryflier

      I finished 8 rounds of chemo on April 20, after having a mastectomy on November 13. The chemo wasn’t as bad as I anticipated. I experienced the “ predicted” side effects - lost my hair, fatigue, change of appetite. I never got nauseous.
      2 months later doesn’t represent long term, but so far I’m doing ok. My hair is growing back, I’m back to my regular activities. Not as strong as I was but I’m working on it. Good luck with whatever you decide.

      3 months ago
    • lh25's Avatar
      lh25

      msesq - good point about the eyebrows, I forgot that mine never totally grew back! Not sure how I missed that, but clearly it's not a big deal. On the plus side, I don't need to shave my legs often.

      3 months ago
    • Jenann's Avatar
      Jenann

      Hi everyone, just wanted to update you regarding my oncologist appointment today, but first wanted to say how much it’s meant to me that you all shared your experiences and thoughts. I’m so grateful for all who replied and for this support board, it’s made me feel I’m not alone in this.

      So my oncologist told me that there 2 primary reasons I need chemo. The primary reason is my my tumor size, which was 3.17 cm, or 1.25 inches. He said tumor size trumps everything thing else and the larger the tumor, the more likely it is for a stray cancer cell to break away from the tumor and go for a drive and pick an organ to hunker down on. The other is my age. I just turned 42 yesterday, which means that I have hopefully 3-4 decades of living to do, which also means a longer time for cancer for recurrence.

      Regarding the new breast cancer study which states some women may be able to skip chemo... well the tumor size for women in that study ranged from 0cm to 5 cm, with the (majority) of women being 1cm or less, so my tumor was 3 times larger and I don’t fit in the majority, I’m far from it. The study also advised that premenopausal women under 50 may benefit from chemo and advised caution regarding not doing chemo. The size of the women’s tumors was one thing the news reports didn’t elaborate on and at least for me, caused false hope and unnecessary anxiety as I thought I could maybe skip chemo.

      Regarding the oncotype DX test, oncologist insurance would not pay for it because with my tumor size chemo is needed. He also said women with larger tumors have a higher chance of recurrence and due to my tumor size, this test would likely give me inaccurate information.I’m not sure I’m making sense here? I apologize, my anxiety is super high not only due to cancer diagnosis but also dealing with marital and family issues so my thinking and my memory are slightly impaired.

      I also asked about my tumor grade ( which is a 2 of 3.) he also said that due to my large tumor the grade, and even the stage,is trumped by the size. He gave an example of this but I’m cognitively unable to explain it right now.

      I also spoke to him about permanent side effects and he said the strength of the chemo and the duration that I will be receiving are not anywhere as strong as what women Metastatic breast receive and he said it’s very unlikely I will have any permanent side effects but was also honest that he can’t predict the future either. He said my risk of leukemia, heart damage, neuropathy, are small, .5% to 2%. He said he’s very anal in monitoring his patients and explained he will be doing weekly blood tests such as a bmp and CBC and nurses will monitor vital signs, he’s also doing a repeat echocardiogram every 2-3 months.

      He was very understanding and spoke to me for almost an hour. I also had my brother on speaker phone and he answered all his questions to. He also told me he will speak with my husband about what he needs to do as my husband, and will do it in a creative way so my husband will not know that I told my oncologist all the stress my husband has been putting on me.

      He was pretty great, he told me he wishes he could just say “trust me,” but acknowledged that’s pointless because I don’t know him and no one gets immediate trust, it has to be earned.

      We both were able to smile a little at the end of our meeting. He told me that he was sorry if he was to blunt with me but 95% of his patients have not educated them selves as I have, and he’s normally doesn’t have to justify doing chemo with so much detail, but and he really wanted to stress how important it is that I proceed with chemo. He also told me that if he was blunt it’s because he thinks of his patients like his own sister and he was very worried about me. He also told me if I decide against chemo he will still support me and he wants me to call or text him with any questions.

      Well.... I’m rambling now. Sorry. I scheduled to start chemo next Tuesday. Told him I need a week to get my house disinfected as I just had my 27 year old step daughter and her 2 kids move out and she was not a clean person, probably why her kids were regularly sick.

      Thanks again to everyone, god bless you all!

      3 months ago
    • Sheryl88's Avatar
      Sheryl88

      Sounds like you have a great Dr. having one that will listen to your questions and concerns and spend quality time with you (and not be rushed) is amazing. Mine is like that too. Good luck with your treatments and don’t worry about them. I found that if I went to the treatments with a positive outlook, I had less immediate side effects.

      3 months ago
    • Judytjab's Avatar
      Judytjab

      JenAnn, thank you for the update. It sounds like you have an awesome caring doctor. Sorry you have so much stress on top of the stress of cancer! It’s not fair. Big ((hugs)) to you and know we are all here to support you. Keep us posted on how you’re doing.

      3 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      @Jenann, thank you for the update. Your doctor sounds AWESOME. I wish everyone could have such a patient, caring, open oncologist.

      I am sorry for my part in causing you extra anxiety by giving links to news stories about people not having to get chemo. I definitely wouldn't have wanted to cause you more anxiety.

      Please keep us informed as you begin your journey through chemo. Hopefully, you will be one of those who sail right through with few to no side effects, even temporarily.

      Know that we are here for you, to listen to you, to share with you our thoughts and experiences, to send cyber hugs ... whatever you need...

      Praying life gets a lot easier for you in all ways.

      3 months ago
    • Jenann's Avatar
      Jenann

      Thanks Sheryl88 and Judytjab! And I will post updates.

      3 months ago
    • HOBO's Avatar
      HOBO

      Jenann, while our cancer is different, your story sounds much like mine. I had so much stress from hubby and my own invasive phobia that I was a crazy person at diagnosis. I got no support from my husband, which I was used to before I got sick. I had a phenomenal gyn/onc but my medical onc was the worst. I had a huge support system of friends. I was stage III endometrial adenocarcinoma. They threw the kitchen sink at me to save me.

      I am not sorry I did treatment. I have been alive 5 years past diagnosis to share in weddings, babies, and graduations plus much more. But to be honest, I had side effects. I had PAIN. We had to stop chemo after 4 treatments due to neuropathy. I ended up in a wheelchair. I went on to do radiation and breezed through it. Treatment is different for everyone. I survived. I am no longer in a wheelchair. My neuropathy is more than a daily nuisance but I still would not change anything. You are young and have a full life ahead of you. You can do this!!! Will it be tough? Maybe. But you will do it. One day at a time. Everyone here will help you through it. You will never walk this path alone. It is okay to be afraid. This is scary stuff. You have a great support in your doctor. He listens. Had mine listened I may not have had so many side effects. So hold your head up. One day at a time. You got this!

      3 months ago
    • Ydnar2xer's Avatar
      Ydnar2xer

      Jenann, if anyone is doing such a survey, I'd sure like in on it! I have experienced many side effects from the TCH regimen of chemo I got 6 years ago for my second bout of breast cancer. Ever since chemo, my feet have had neuropathy---all day, every day. And now I often have it in my hands. I also have noticed much more forgetfulness--I AM getting older of course (now 65)--but I noticed the change right after chemo. STILL---I am glad that I went through chemo because I really think it's kept me alive. I am able to cross things off my bucket list---one of them being able to hold my first grandchild--so I would heartily go into more chemo should the circumstances demand it. Good luck in making your decision. For me, better here "mostly" than definitely not!

      3 months ago
    • petieagnor's Avatar
      petieagnor

      The only permanent side effect I had was neuropathy. It was 12 years ago & I've done just fine. This time around it has gotten a little worse, but I'm doing OK. I don't take any meds for it as those made me foggy & was afraid to drive.

      3 months ago
    • alivenwell's Avatar
      alivenwell

      I had that metalic taste all the time from Folfox. Everything had the weird flavor of melted aluminum foil. Chocolate helped that. I also had neuropathy. After treatment, I was told to take vitamin B6, eat nuts and dark leafy greens for magnesium. I have no neuropathy now.

      3 months ago
    • lynn1950's Avatar
      lynn1950

      There is a magazine called CURE that is free to cancer patients. You can read it online. The last issue has a focus on survivorship plans. Cancer centers started providing them in 2005. I received one at the end of chemo. My plan includes information about possible long term side effects from chemo and radiation, including leukemia and heart problems. Be sure you get one from your oncologist or medical social worker to share with your GP. And don't forget your subscription to CURE.

      3 months ago
    • lynn1950's Avatar
      lynn1950

      Oh! My long term side effects, so far, include mild lymphedema and SEs from Arimidex (a whole nuther story).

      3 months ago
    • ChildOfGod4570's Avatar
      ChildOfGod4570

      Jenann, your experience sounds very much like my own. I had just turned 43 and had a 3 CM tumor they wanted to shrink before I could have surgery. It was creepy to "keep the cancer" and wait, but they said the same thing your doc is telling you … Size trumps all. It's been 5 years since my diagnosis, and I amNED thus far. Come this fall, if everything remains stable, I will be 5 years NED! I have another tip for you. If you get that icky taste in your mouth like you licked a flag pole, popsicles, mint ice cream, and salty foods will cover that up for a little while, mint chocolate Klondike bars keeping the taste away for a half hour. At least that is what happened for me. Drinking very cold drinks helps both during and after chemo. HUGS and God bless.

      3 months ago
    • Jenann's Avatar
      Jenann

      Hello everyone, well I had my first chemo treatment yesterday and it went okay. I Started getting a sore throat, headache on the way home from treatment but Tylenol helped with that. Woke up at 2am with a combination of heartburn and nausea but I took tums and a pen nausea medication and set up a bed wedge to sleep more upright and was able to get back to sleep.

      Today the sore throat is gone, only have a very mild headache and just tired and have to take frequent breaks or I get wore out. Slept in until 10am, which felt good. I’m praying that this is the worst it will get but I’ve heard that some people don’t get sick until the 3rd or 4th day. I’m going to try not worry about it. I’ll have to face whatever comes anyways.

      Thanks to all those who gave advice and other tips and support. I appreciate you all! God bless!

      3 months ago
    • alivenwell's Avatar
      alivenwell

      You might want to check out magic mouthwash. Most oncologists know what it is and it really helps if you get mouth sores due to the chemo.
      It sounds like the Tums are a great solution. I was also told to use Tylenol.
      A healthcoach told me to buy candied ginger which has a strong flavor that can combat nausea.
      I hardly got sick. I did lose hair and bought a wig from Tender Loving Care at link www.tlcdirect.org
      They have some great wigs and other products at a reasonable price.
      Sometimes insurance companies cover a wig, but the correct terminology has to be used on a claim. I also heard that tofu and other soy based products have phytoestrogen which can aggravate breast cancer. You might want to ask about that. Everybody is different.

      3 months ago

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