The long-term consequences of chemotherapy

When I was a medical student doing my Oncology attachment I remember being obsessed learning about the staging systems used for the different types of cancer and the clinical management of the various oncological emergencies such as spinal cord compression and febrile neutropaenia. Why was this? Well it was because those were the topics that came up in the exams of course and as a student who was very good at passing exams my focus was obviously centred on these issues. Having lived through chemotherapy as a patient now though I think perhaps we should at least learn a little about the longer term consequences on the body as these are the things that a patient has to live with day in day out long after the treatment has finished.

When DtM consented me for chemotherapy back in August he wrote on the form in the frequently occurring or serious risks section “hair loss, vomiting, myelosuppression and infertility”. I was then given a leaflet explaining the risks of getting pregnant whilst having chemotherapy and the steps I should take regarding contraception. I was then about to embark on an intensive in-patient chemotherapy regimen including cyclophosphamide, which can cause haemorrhagic cystitis and significantly increases the risk of developing secondary cancers; doxorubicin, which can cause heart problems when used in high doses; vincristine, which can cause peripheral neuropathy; etoposide, which can cause acute myeloid leukaemia and liver problems; and ifosfamide, which can cause encephalopathy and have significant long lasting effects on cognition. I knew about all these risks already as I had worked for a year as a senior SHO in Haematology but they were not mentioned to me in the consent process.

I suffered my fair share of acute complications of the treatment including multiple episodes of febrile neutropaenia and haemorrhagic cystitis. However, I soon recovered from these and thought that my body would return to ‘normal’ once I discontinued my treatment in January. Unfortunately this is not the case and over a year on I have been left living with some consequences of treatment everyday serving as a little reminder of what I went through.

Perhaps the most disabling of these is the effect treatment has had on my hands. I developed a peripheral neuropathy from the vincristine early on which has gradually worsened over time. I can barely feel the tips of my fingers anymore making even simple tasks more difficult. I was such a dextrous person before with lots of hobbies, but I struggle to play my flute or do my embroidery like I used to. I frequently burn my hands when cooking now too. I also struggle with procedures at work, making me feel inadequate. I was always the Registrar who could get the impossible cannula before, but not anymore. It isn’t just the peripheral neuropathy that has affected my hands though; I have also developed an inflammatory type arthropathy. This is a well-recognised long term consequence of treatment with drugs such as cyclophosphamide. Unfortunately there is very little that can be done about it, but some mornings especially since the weather has got colder I can barely move my fingers. So the combination of stiff, sore and numb fingers has disabled me in a way that I would never have contemplated. Of course I had no choice about having chemotherapy at the time, it was that or die, but it might have been nice to have been warned about something that was going to affect my life in such a significant way.

Another consequence of chemotherapy that DtM did mention in passing one day at clinic is the effect on cognition. Now before illness I used to be a Medical Registrar working in a very busy district general hospital. Although some people might think this crazy I used to enjoy the challenges on-calls presented. I could juggle fifteen things at once with no problem and used to thrive on being busy. Whether this is a consequence of illness or a consequence of treatment those abilities have now deserted me. I haven’t carried the SpR bleep since I went back to work and doubt I could manage if I did. I struggle to keep up during the day on the ward when two patients are simultaneously unwell. The cognitive impairment is subtle and perhaps not recognised by those around me but is very noticeable and frustrating to me. I now have to tackle my work in different ways and concentrate on other aspects of the job I enjoy such as teaching. I would so love to run an acute ‘take’ again but the sad thing is I really don’t think I would be able to cope.

Over a year on I also remain lymphopaenic. The consequence of this is that I merely have to look at someone with a cold and I end up snotty for a week. The norovirus has also got me as have other various miscellaneous infections. I was a healthy girl before all this and was very rarely unwell with anything, sometimes I wonder if my immune system will ever recover from the battering it took last year.

So my body and mind are left with the invisible scars of treatment long after I discontinued chemotherapy. I have to live with these and like anyone living with any disability learn to work around them where I can and accept that there are just some things I cannot do anymore.


20 thoughts on “The long-term consequences of chemotherapy

  1. Thank you for writing about this topic. I do think that the high dose chemo and treatment decided upon in the moments you are faced with a life threatening disease seem at the time to be worth the risk . . a trade off. You are an adult making those decisions with a medical background and you still found it hard. Take what you know now and apply it to children or adolescents and the fact that parents have to make these types of heart wrenching decisions when they have limited medical knowledge . . and the decisions need to be made almost instantly. I had situations with my son where the medical community offered a life and death decision to us and wanted the decison in a matter of minutes .. basically . . “Do you want to treat him . . or take him home to die.” As a parent your whole purpose is to raise and protect your child until they are old enough to be on their own . . such an impossible situation . . almost a Sophies Choice decision. I am talking only about children here and not adult based decisions . . couple all this with the fact that if your child survives than many are faced with life long disability brought about by the harsh treatment. It’s my hope that these issues will be brought up and discussed. With dialogue maybe at some point better treatments, less harsh, but accomplishing the same goals can be established . . but I fear that this will be many years into the future. Love your words and your courage. You are a special lady. ♥ :Love to you, Patty R. (mom to Nathan who also had stage IV DSRCT).

  2. Lets hope plenty of medical professionals read this blog and take on board the kind of information you as a patient would like to have received and adapt the way in which they speak to their patients accordingly.

    Also, I totally empathise with the cognition thing. Although for entirely different health reasons, I’m really struggling with that at the moment. I’m finding it difficult to keep on top of things at work like I used to because I forget about what’s got to be done and I can’t think about more than one thing at once anymore. My brain was always really fast before and I can tell it’s slowed down now which is really frustrating and upsetting. I’m struggling to continue to work in a job I love. It’s so hard to accept when health issues begin to interfere so significantly with your life and start to dictate how you live it.

    It must be very difficult for you to continue to work when you’re struggling as you clearly still are.

    Kate – you’re an inspiration. x

  3. Hi,
    I loved reading your blog on the effect of chemotherapy. I searched for years to get information on how chemotherapy affects the body and the mind. I fought so hard to regain some energy after two years of chemo and a bone marrow transplant. I am so much better now but I am starting to have hand and feet problems so your article actually puts me on new path and I thank you for that.
    One of the books that helped me immensely was Fatigue in cancer.
    It was the first time I read about a scientific proof and it made me feel human again.

    Anyway, I am very grateful to you that you took the time to write these lines.
    I wish you a good path ahead of you.


  4. When my wife was on chemotherapy for her brain tumour, she developed severe itching due to her liver being affected severely. The itching was driving her absolutely insane. Her brain had already been seriously destroyed by the intense radiotherapy course so it was up to me to decide with the doctors to halt the chemo for a month and see if her liver recovered. It did and the itching stopped. Since the chemo was only to give her a few extra weeks/months, we then decided not to recommence the chemo, purely because the itching made her life a living hell.

    They only mentioned the standard side effects of nausea, hairloss etc. The same thing happened with the radiotherapy. We were utterly unprepared for the side effects that caused. It always feels like in a way it was not the tumour that killed my wife months before her actual death, it was the radiotherapy and the extensive necrosis it caused. There is still much to be done in the way of information giving to patients. It seems that many doctors are worried that giving patients the full picture might make them refuse treatment. But how can we call this Informed Consent?

  5. You are so brave and coping so well, I hugely admire you, Kate.

    I hope that in time the side effects you are experiencing will either diminish or become much less noticeable to you as you adapt. I used to have all manner of neurological and visual ‘quirks’ – a periodic tunnel vision effect – double vision that placed an irritating double ‘halo’ around, for example, the heads of everyone I looked at – on waking, a sensation of morse code being tapped out on one side of my face before it moved into my spine and eventually stopped – lots of numbness and pain – various balance problems. Aside from occasional symptom flare ups, all except the numbness and some pain seem much improved, or I’ve become so used to them that I largely ignore them.

    I have the temperature exacerbated numbness in my fingers that you have. My numbness over-reacts to small changes in temperature, so that my fingers become as numb as they might on an icy Winter’s day, as the result of a drop in temperature on a Summer’s evening, even though it’s not at all cold . I believe you will adapt to this and to other symptoms, new skills will replace those lost. You are already developing greater empathy with and understanding of other patients. That’s a hugely valuable skill for a doctor, one that is too often lacking in the medical profession. Patients will love you for this and it will make you a far better doctor.

    One aspect of symptom management that is directly under your control is to learn to get sufficient sleep and to cope with stress. I’ve found stress management counseling invaluable in this respect. My faith is a great help too. Research has shown that sleep deprivation and stress not only exacerbate symptoms, they can produce hallucinatory effects that are quite capable of masquerading as symptoms.

    God bless you, Kate.

  6. I want to share with you part of an email I’ve received from Dr Bernie Siegel in the US. Dr Siegel graduated with honours from Cornell University Medical College and trained to become a surgeon at Yale New Haven Hospital, West Haven Veteran’s Hospital and the Children’s Hospital of Pittsburgh. In 1989, Dr Siegel retired from Yale as an Assistant Clinical Professor of General and Pediatric Surgery.

    Dr Siegel has written many inspirational books about empowering patients with survival behavior to enhance their immune system competency. In 1978, Dr Siegel founded ECaP—Exceptional Cancer Patients – a self help group for patients in which he and his wife remain active today. “ECaP is a therapeutic approach Bernie calls Carefrontation that helps patients interpret their drawings, dreams and images to express their feelings about the healing process. The physical, spiritual, and psychological benefits that emerge strengthen the immune system, a direct response to the power of the Mind-Body Connection about which Bernie has written and spoken extensively.”

    “Studies reveal when true compassionate care, versus end of life care, is given patients live longer. Wordswordswords become swordswordswords when doctors tell people when they are going to die. It speeds up the dying process when hope is taken away.

    When our first in-patient hospice opened and meant a place to die the first patients admitted all died within a week. Now the best hospices have graduations, commencements and drop outs because people get their lives in order and go home there is self-induced healing and when you heal your life you extend your time of survival because the body gets a ‘live’ message.

    I know people who were dying due to an error in their blood tests and so they thought they were going to die. Then doctors discovered the error and in two weeks they were alive and well.

    Besides my books many psychiatrists have written about the will to live and how patients didn’t die when they helped them heal their lives and relationships.”

    From Dr Siegel’s online blog:

    “A patient of mine, who was a landscaper, after surgery refused treatment for his cancer because it was springtime and he wanted to go home and make the world beautiful before he died. He lived to be ninety-four and became my teacher. The mind is indeed a powerful thing and not emphasized enough in the medical information we receive during our training. We do not receive a true medical education because it does not contain the tools to help people with their life experience. It is focused on disease and prescribing for them. We do not ask patients how may I help you but rather what is your chief complaint and then we prescribe for them without knowing their life story and why they might be sick at that time.”

    “I have learned from my experience with patients and by asking them, “Why didn’t you die when you were supposed to?” that they always had a story to tell.”

    God bless.

    • Stayin alive-
      Not sure why your comment did not receive praise, but it gets my praise. Hope, faith and love – is there anything we can do that is more powerful than this?
      If you know any good books on this I would
      be greatly appreciative if you could list some.
      Thank you for your comment.
      From a breast cancer survivor who still struggles to find balance.

  7. Kate, I have been so moved by your blog. I just wanted you to know that you are reaching out to people with your hard work. Lots of love and best wishes

  8. Hi Kate
    It’s two and a half years since I finished some fairly nasty chemotherapy; the peripheral neuropathy in my hands, which was vile for the first year, has eased; as a musician this was pretty scary stuff, but it is far better, and only noticeable in cold weather now.
    The fatigue is manageable, provided I get the occasional nap( I know that sounds crazy but the fatigue from chemo and fatigue from everyday life aren’t the same thing). As far as cognition goes, ‘chemo brain’ does pass. Every few months I will wake up and suddenly find the brain a bit clearer.
    Wishing you all the best for the future.

  9. With respect, you have believed everything you have been told. Understandable being a doctor as you are. You are resigned to death. There is another way if you want to live. It involves dedication, unconditional love, hope and discipline in vegan diet, high nutrition and exercise. Many cases of people healing cancer. There is nothing unique about your situation. I wish for you that your mind opens to the endless possibilities of health which are lying in a possible future of yours, just waiting for the taking.

    • CB: Oh be quiet. It is disgraceful to suggest that people could heal from cancer if only they did XYZ. How DARE you suggest that my wife could have survived her brain tumour if only she had eaten more lentils and continued with her fencing, rugby, running and squash when she could hardly walk due to the constant seizures. How dare you suggest people are lazy and selfish and do not care enough about their loved ones because otherwise they would surely follow your incredibly simple steps to full health.

      Please provide solid evidence-based research to verify your outrageous claims. Oh wait. There isn’t any.

      • If you take some time to read you will find hundred of testimonials of healing with diet. The diets are usually raw food, low protein, low calorie, often combined with water-fasting or juice fasting. Also, ketogenic diet (low carb, low protein, high fat) has some success stories with brain tumours, being tested by researchers. Water-fasting has testimonials of healing from cancer. 4 glasses of carrot juice alone have cured cancer. Cannabis oil has been used. Their success is explained by the metabolic theory of cancer (Thomas Seyfried), trophoblastic theory of cancer (John Beard, Donald Kelley) and anti-cancer properties of foods used (falcarinol in carrots, TCH in cannabis).

    • CB, tranzicionshqiperi – The mere fact that there are hordes of people as gullible as you and plenty of others who will seek to take advantage of that idiocy (generally for financial gain) does not give your ludicrous claims credibility.

      There are without doubt foods that you can incorporate into your diet while you are well with a view to achieving optimum health (lowing your risk of heart attack/stroke etc) but there is regrettably nothing any of us (no, not even you!) can do to guarantee that you will not get ill. Cancer does not discriminate. There is certainly no regimen of exercise and diet which will facilitate ‘healing’ once this terrible disease takes hold. Suggesting that “4 glasses of carrot juice alone have cured cancer” would be laughable if it weren’t such a dangerously stupid thing to say.

      Troll-quacks like you really wind me up. Despite that, I do hope that neither of you has to find out the hard way that what you appear to believe is absolute tripe.

      • One thing dealing with food that is quite perplexing to me is that ketogenic diet has not been tried more aggressively for cancer treatment. I have heard from many doctors who state the following:

        1)Cancerous cells need A LOT of glucose to survive.
        2)Cancerous cells have many insulin receptors on the perimeter of the cell.

        If you really want to starve the cells, limit glucose intake and successive insulin secretion. Makes sense – but this hasn’t been tested enough. It is difficult to theorize whether this would work on later stages of cancers, however early on it may be more beneficial. We already know it is beneficial (even intermittent low-carbohydrate diet) for prevention of breast cancer recurrence.

        Cancers need sugar – don’t give it to them.

  10. Dear Kate,
    I too am a physician, and was diagnosed with ovarian cancer 9/11/12; underwent 6 cycles of chemo, finishing on 1/24/13. I was thrilled that I was “over the effects” of chemo. Each cycle provided increased migratory leg pains, severe facial rash from the steroids, generalized weakness, diarrhea. However, 1 month after chemo I had severe tendonitis on my legs. I could not cross my legs without pain and could not lightly touch the outside or inside of my thighs or knees without pain. (I got that under control with deep muscle massage that reduced the substance P that the chemo agents had released). Now, however, I find I am having more morning stiffness, hand stiffness with joint swelling, a trigger finger in my right hand, and waking up at night with severe numbness in my hands in spite of using my hand splints for the CTS.

    I plan to start taking some ASA 81 mg bid and see if that can help. I just googled the late effects of chemo and found the arthropathy that I seem to be experiencing is not all that uncommon…….just something that the oncologist did not explain or forewarn me about. I don’t plan on letting this get to me…..just VERY annoying and will be proactive in trying to find ways to reduce the symptoms.

    It is just nice to see that others have had it and that it improves. Good luck.
    Dr. Mary

  11. Kate – I totally empathise with your position.
    I had one round of chemo 18 months ago and reacted so badly I nearly died. My oncologist stopped,treatment however 18 months later I have an immune system spiralling out of control reacting to anything and everything I come into contact with. My patch tests results were so severe and widespread that I appear to be allergic to everything.
    Now if I don t take steroids my skin blisters and weeps, I have debilitating fatigue, rheumatoid arthritis and am virtually bedridden with many black thoughts and ‘chemo brain’ and memory loss.
    I was previously a fit, happy active person. Informed consent is a nonsense in my case there is no way I would have chosen this path.
    My oncologist, dermatologist, general doctor all say ‘we ve never seen anyone react like this’
    Has anyone else come across any of this? I d love to find a specialist in overactive immune responses…….

  12. Hi I had breast cancer in 20013 .chemo and radiotherapy .the chemo effected my mouth so so many who lose there taste.but it’s now 2017.and I’m still suffering with the mouth.I have a name for it dyesiua .food changes every day.never knowing what I’m able to fridge and freezer have been empty for 3years.I suffer with chronic tiredness .and its causing bowel’s mind blowing.I have to go out every day to the shops and try different food.there’s even been times were I found I could eat chicken crisps .I got through 140 bags in 4days .because I could taste them.then out of the blue it switches’s crazy.I do have dark days .because I’m so hungry on days when I’ve only eaten little.I’m trying to find one person who this has happened I see most post were people have been effected with their limbs.

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