Forum Discussion
More research needed into side-effects of chemo and hormone therapy
In our BCNA network, many members report unexpected, painful and ongoing side-effects during and after chemotherapy and hormone therapy; for example in a recent discussion on ‘hormone therapy and tendon issues’. Sometimes treating medical staff seem to be unsure about causes and best treatment for side-effects.
I read a study 'Incidence and severity of self-reported chemotherapy side-effects in routine care' (https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0184360#sec013 ) This study reports that knowledge about side-effects comes largely from clinical trials. There is little evidence coming from normal clinical care.
In this study 449 people with breast, lung or bowel cancer were interviewed and asked questions about their side-effects. The study found that “3/4 of individuals undergoing chemotherapy in NSW will experience multiple side-effects during their treatment, and for over 60% this will include a serious side-effect.” The study found that side-effects were similar across the three cancer types.
The authors suggest that “this information is useful for both clinicians and policy makers, who typically make treatment and funding decisions for standard practice, but often on the basis of potentially unrealistic clinical trials. This work also confirms the need for side effects to be collected using patient-reported methods, to be monitored throughout chemotherapy treatment, and highlights the importance of observational data in providing information for decision-makers that is relevant to the clinical practice setting.”
Have a look at this study; it is very interesting and readable, and brings up lots of questions and ideas. Although this study is about chemo side-effects, and does not include hormone therapy side-effects; I am thinking that a similar study is needed to measure hormone therapy side-effects in the real world.
66 Replies
- @melclarity <hugs> I’ve chosen quality over quantity. Getting BC at 42 I figure most statistics are on older women, generally post menopausal, and might not correlate to my “unusual “ situation anyway. I struggle with having treatment that causes more problems than predicted benefit. Love to you. Best wishes for your treatment 💕
- @primek I'll ask him again but im pretty sure we had the discussion and I think he said that there isnt a huge percentage benefit for me. Also considering my compromised life I wouldnt choose it I dont think. Im over it lol. Ive done more than enough to prevent and have peace these past 8yrs X
- @melclarity I'm surprised that they are not recommending 10 years for you on AIs given your previous recurrence.
- It certainly is an interesting one the AI's. I've received an email reply from my Oncologist on exactly all this. I did 4yrs on Tamoxifen and had a recurrence. Post chemo in 2016 was put on Arimidex for about 18 months and then switched to Aromasin due to side effects and have been on this for nearly 2 yrs. He acknowledged all the side effects and said it is a problem with many patients. He said I can stop but recommends I see the treatment out til end of 2020, that I need 5yrs on an AI for best protection. This is for me personally and due to the aggressive type of cancer I had at recurrence.
I said to him that the difficulty is the change in physicality is enormous, I can live with the fatigue and pain daily for another 18 months but Aromasin??? OMG!!! there is no way of losing weight. For me 10kg post treatment is unresponsive to any diet or exercise.
Exemestane (AROMASIN) is a steroidal Aromatase Inhibitor (AI) Your extra weight may hang around and increase after chemotherapy if you also take hormonal therapy (tamoxifen or an aromatase inhibitor). If your body shifts into menopause because of chemotherapy, there's a tendency to gain weight. ... It's important to know that the hormone estrogen suppresses LPL activity on fat cells.
The enzyme lipoprotein lipase (LPL)plays a major role in the metabolism and transport of lipids, and consequently is a participant in the development of obesity•One of its roles is to remove triglycerides from the blood for storage in both adipose tissue and muscle cells.••Enzyme activity may also explain why some people who lose weight regain it so easily. After weight loss and weight stabilization, adipose tissue LPL is increased and its response to meals is heightened.•People easily regain weight after having lost it because they are battling against enzymes that want to store fat. Fat storage is efficient, and fat oxidation is not•The activities of these and other proteins provide an explanation for the observation that some biological mechanism seems to set a person’s body weight or composition at a fixed point; the body will make adjustments to restore that set point if the person tries to change it.
I explained I get the science with treatment, but....do they not know the poor quality of life thereafter?? because it is a major issue! Due to my situation I dont feel Im able to stop it. Mind you I did everything possible last time and it still came back inspite of it.
They have a long way to go with these medications, and only have Letrozole now I can switch to, which I will purely because its not a steroid and I may be able to shift some weight.
M - That's good to hear, @Brenda5 .... well done YOU!!
- That's great @Brenda5 because you were going through a rough patch for a while there. Onward and upward and good on you for making the right decision for you. xo
- I am fine now. No more bone aches or lameness whatsoever. My balance and co-ordination is almost back to normal. My brain is almost back but it may never fully recover. My eyesight is much better. My atrial fibrillation is gone. My energy is coming back although the stamina needs working on. My skin and healing is coming good. Even my lymphodema is almost gone.
I am enjoying life now. - Dear @arpie; My hormone med is anastrazole, not tamoxifen. I hope you go well on your anastrazole. Unfortunately it would cost time and money to collect and 'number crunch' our side-effect info; but it would save time and money in the end because treatment options would be more tailored and effective I think.
@Harvey1903,
I've just taken my weekly 'horse tablet', alendronate, hopefully keeping osteoporosis at bay. Got to wait 30 minutes before I have my cup of coffee - aaggghh! Going for a bone density scan in a few weeks. I've just joined an exercise class for seniors. It is great fun and quite hard work. Lots of balance, strength and resistance work; just what I need to complement my morning walk. - Every GP should be made to pass on information from their patients re side effects of Chemo and AIs ...... it is obvious that our observations are being ignored, as we are NOT part of a 'registered trial'! FFS!! WHY are they not believing us? Are they calling us liars?? Unfortunately, YES, they are!
@Brenda5 - I may well be following you - after trying Anastrozole/Arimidex (starting last week) .... I will only have Tamoxifen to try after that, if it doesn't work out!
So you've not had too bad an effect from Tamoxifen, @jennyss? - @Brenda5 I'm the same - I stopped my AI's because of the side effects - main one was I got a ruptured tendon in my arm, hence no golf. But along with everything else I had a nagging feeling that this was not right. Well, before I started chemo I had a bone density scan. Just normal part of pre chemo. I didn't get the results immediately and when I did I really didn't look at them, with all the chemo side effects, just put into the file.
However, with my tendon and my back was out I went to my 'new' GP who sent me for a CT scan which showed a bulging disc. I then remembered the bone scan which showed I have osteoporosis in the spine L3. Nothing was ever mentioned by my Onc about this.
At this point I am so glad I did not continue with the AI as it would have worsened my bone density. Will be having six monthly injections for the osteoporosis.
By the way - I'm back to my normal self after my trial of AI's. Just normal stiff back. Just my experience - I had a mastectomy and chemo. I will have my other side mamogrammed on Friday fingers crossed...... J
