Make your side effects known

Hi,  Thanks for clarifying that you are just trying to get some attention paid to these side effects so that some treatments will be developed for them. Maybe there are some things available now that could help. An oncology nurse said in their journal that  seems that often these solutions come from paitents experimenting and finding answers that work for them, and eventually this feeds back to the oncologists..There is a thread on the her2support.org group about side effects when down to Herceptin-only.  http://her2support.org/vbulletin/showthread.php?t=57713

One woman had some suggestions about what worked  for her joint pain. Please let us know if helps you. She says:

"Side effects from Herceptin only (after 6 TCH)? Easy, running nose and achy joints but once I started glucosamine it got alot better. It is designed for joints and bones. I was told it worked well. I checked with my oncologist before I took it and she said it was fine. It has worked wonderfully for me. I have no pain. I could barely walk in the mornings due to my joint pain and about 2 weeks into the glucosamine I was feeling better. I am also on femara which causes joint pain and feel pretty good. Everyone is different but it works for me. I also take Vit D and calcium and my bone density was excellent. Good luck. It will go well. Promise!". 

I have a friend whose hands were so crippled with arthritis he was going to have to stop work as an electronic engineer. He waxes lyrical about glucosamine, which totally reversed the problem. He said it is a natural food product rather than a bioactive drug as such, and told me to make sure to get glucosamine Sulphate, not any of the other glucosamine salts, He takes 1500 mg a day

best wishes for an effective treatment for this pain now.

I know it will not happen in my lifetime but I am hoping for something (another drug?) to counteract joints pain from herceptin not banning it. Currently joints pain is not a widely know side effects from herceptin.

 

This is a safe place to express my woe. My GP recommend panadol, my oncologist recommends aspirin, ibuprofen or naproxen for the pain, and none help 

 

The second reference is not a scientific site but the figures (facts?) given is from The New England Journal of Medicine. 2005. I also find traditional medicine can be bias by highlighting and interpretating the figure as a better outcome of successful non recurrence (increase from 12.9% to 24.6% is an increase of 50% or 52.4 is more impressive than 12.7%  both figure are factual).

 

Perhaps Disease-free survival (DFS) is more accurate term. BC free is less accurate because undetected cancer cells remain in the body after treatment and cause the cancer to return later (recurrence or relapse), “thus BC free or better term DFS” when there is no cancer detected five years after diagnosis.

 

I am already half way through my treatment, after so many side effects, not just joints pain, it all be for nothing if I stop now.

 

PBS is paying $50,000 for herceptin have no relation in reporting heceptin side effects to TGA because first it must be acknowledge that it existed that it may be able to treat this side effect in the future.

 

 

I know it will not happen in my lifetime but I am hoping for something (another drug?) to counteract joints pain from herceptin not banning it. Currently joints pain is not a widely know side effects from herceptin.

 

This is a safe place to express my woe. My GP recommend panadol, my oncologist recommends aspirin, ibuprofen or naproxen for the pain, and none help 

 

The second reference is not a scientific site but the figures (facts?) given is from The New England Journal of Medicine. 2005. I also find traditional medicine can be bias by highlighting and interpretating the figure as a better outcome of successful non recurrence (increase from 12.9% to 24.6% is an increase of 50% or 52.4 is more impressive than 12.7%  both figure are factual).

 

Perhaps Disease-free survival (DFS) is more accurate term. BC free is less accurate because undetected cancer cells remain in the body after treatment and cause the cancer to return later (recurrence or relapse), “thus BC free or better term DFS” when there is no cancer detected five years after diagnosis.

 

I am already half way through my treatment, after so many side effects, not just joints pain, it all be for nothing if I stop now.

 

PBS is paying $50,000 for herceptin have no relation in reporting heceptin side effects to TGA because first it must be acknowledge that it existed that it may be able to treat this side effect in the future.

 

I know it will not happen in my lifetime but I am hoping for something (another drug?) to counteract joints pain from herceptin not banning it. Currently joints pain is not a widely know side effects from herceptin.

 

This is a safe place to express my woe. My GP recommend panadol, my oncologist recommends aspirin, ibuprofen or naproxen for the pain, and none help 

 

The second reference is not a scientific site but the figures (facts?) given is from The New England Journal of Medicine. 2005. I also find traditional medicine can be bias by highlighting and interpretating the figure as a better outcome of successful non recurrence (increase from 12.9% to 24.6% is an increase of 50% or 52.4 is more impressive than 12.7%  both figure are factual).

 

Perhaps Disease-free survival (DFS) is more accurate term. BC free is less accurate because undetected cancer cells remain in the body after treatment and cause the cancer to return later (recurrence or relapse), “thus BC free or better term DFS” when there is no cancer detected five years after diagnosis.

 

I am already half way through my treatment, after so many side effects, not just joints pain, it all be for nothing if I stop now.

 

PBS is paying $50,000 for herceptin have no relation in reporting heceptin side effects to TGA because first it must be acknowledge that it existed that it may be able to treat this side effect in the future.

 

Hi 2013, thanks for explaining what you think the facts are and what you think the statistics mean. Without wishing to be rude, I have to say that nfortunately, some of your statements are  incorrect and in others you have completely missed the point. Given the seriousness of what you are trying to do, I feel I should clarify this. Please do not be offended, but others reading it need to have the correct facts.

.1)You miss the point made in the first article referenced. the BCRIG006 Trial from 2006  compared two effective  drug-regimes:

AC-T ie doxorubicin and cyclophosphamide followed by docetaxel (this included Doxorubicin which is very effective against cancer but caused a significant rate of permanent heart damage).

 TCH, ie herceptin plus Carboplatin and Docetaxel, also very effective but caused less heart damage, and what heart damage it did cause was reversible once you stopped taking herceptin.

The point  missed was that the point of the trial was to show that at last women could get effective treatment to prevent HER2+BC recurrence without suffering permanent and irreversible heart damage. This is a much worse side effect than Herceptin's well-known flu-like symptoms which reverse when you stop taking the drug. (BTW neuropathy is not caused by Herceptin it is caused by the two chemo drugs)

 

2) About Herceptin and Recurrences: My oncologist told me that with no treatment but surgery  for my  node-neg, Grade 3, 2.2cm HER2posbreast cancer, I had a 45% chance of a recurrence within 5yrs that would be likely to kill me.

With the TCH treatment with herceptin, I had only an 8%chance of a recurrence within 5yrs.

With AC-T chemo I had a slightly lower chance of a recurrence and would avoid the chance of getting the flu-like symptoms that many of us get from herceptin..Instead I would have a much  higher chance of permanent congestive heart failure from the Doxorubicin .And a good chance that I would still die younger than I should, but from heart disease, not from breast cancer. 

3)The latest Herceptin research trials using paclitaxel and herceptin on unde r3cm node-negative HER2+ cancer showed a 3-year rate of survival free from invasive disease of 98.7%. ie a 3yr recurrence rate of about 2%. This means that the success rate of treatment with herceptin is getting better and better. http://www.nejm.org/doi/full/10.1056/NEJMoa1406281

4)Your 2nd reference  is from healthynet.com which is a very questionable, non-scientific, unreliable, and very-anti-traditional-medicine source which does not actually quote any peer-reviewed scientific research,or any evidence-based information, and  it simply presents its own bias, not facts.

5) You say  "I am BC free, meaning my BC can no longer be detected after surgery. In my case the risks and benefits is not so clear. I accepted there is no certainty in the reoccurrence of my BC or the benefit of the treatment to stop the reoccurrence. However, with me my joints pain and ageing (osteoporosis) is certain"

Sadly, when HER2+ BC is no longer detectable, all you/we know for sure is that you probably do not have any tumors over 1cm in your body. It does not mean that you are  BC free, just that it is no longer detectable. The key problem is that you almost certainly still have  BC cancer stem cells in your lymph and blood immediately after surgery, which are indetectable but  which are able to generate local recurrence or spread to bone, liver, lungs or brain etc to grow into new metastases. They may even have already set up tiny metastases that are too small to show up on scans. The risk of this is highest immediately after surgery, decreasing to very minimal risk after 5 yrs. Research shows that Herceptin does a very good job of getting rid of these tiny metastases so they are gone before you even know they were there. Research also shows that Herceptin actively works on Cancer Stem Cells.Your immune system works on them too. And their presence doesn't mean they are certain to grow into a recurrence, just that they could. Herceptin is invaluable to prevent possible or probably recurrence.

In this way it cuts my chance of recurrence down from 45% to 8% without permanently damaging my heart. To me that is a very sensible choice.But  the circulating Cancer stem cells are BC cells, and they and the possibility they will produce metastases in the future are a part of what we have to learn to live with. Herceptin and its related targetted therapies are important to help protect us and extend our lives, with minimal serious side effects, and research shows this to be so.

Have you asked your oncologist why he put you onto TCH  treatmentL Have you said that you would prefer to be on the AC-T treatment or untreated?  If you are convinced that herceptin is so bad for you, instead of trying to stop others having access to this drug, why not discuss this in depth with your oncologist explaining that  you do not want any more of it and want to stop taking it? Australia's PBS is paying $50,000 a year for you (and the same for each of us) to have this drug for a year, and if you think it is a bad choice, why continue? It  is your choice, and your right to change, even though I would strongly advise against  it.

 

 

Thanks you all who take time to comment. I understand every one of us is different in how we tackle the side effects since the stages, levels, and types of our BC are also difference.

The reasons why I think it good to have official record of side effects is because the acknowledgement from the specialist (cancer researcher, oncologist?) to the lay person.While damage to the heart is a well know herceptin’s side effect, joint pain is not.

Other side effects from other chemo drugs such as Taxotera, such as nausea and neutropenia now can be manage with other drugs, one days so will joints pain…although not anytime soon…first it must not be deny that joints pain is one of the debilitating side effect (that effect 20% or 50% or 98% of herceptin users???-hereTGA play a part), enough to do something about it.

There are those who herceptin is a life saver and there are those who like me, it is an adjuvant/prevention. I am BC free, meaning my BC can no longer be detected after surgery. In my case the risks and benefits is not so clear. I accepted there is no certainty in the reoccurrence of my BC or the benefit of the treatment to stop the reoccurrence. However, with me my joints pain and ageing (osteoporosis) is certain. 

http://www.drugs.com/news/herceptin-positive-results-tempered-concern-1713.html

Within one year, women who received Herceptin showed unusually high positive results-the recurrence rate of breast cancer was reduced 46%. CONSEQUENTLY, TWO YEARS AFTER TREATMENT BEGAN, 8% MORE WOMEN WERE FREE OF BREAST CANCER.

http://www.healthy.net/Health/Essay/Herceptin_more_hype_than_hope/873/2

However, let's look at the figures more closely. The three-year, disease-f ree survival rate was found to be 75.4 per cent for those on conventional treatment, and 87.1 per cent for those on Herceptin. If you subtract these numbers from 100, you get 24.6 per cent versus 12.9 per cent-which is where the 50 per cent improvement in recurrence figure comes from. But another way of looking at it is that ONLY 12 PER CENT OF HERCEPTIN USERS MAY BE HELPED BY THE DRUG TO REMAIN DISEASE-FREE AFTER THREE YEARS.

 

 

I am on Arimidex, I have sore joints and I have noticed my hot flushes have intensified. My oncologist prescribed these for me because it lowers my chances of BC returning. I was given all the information about what side effects could happen. I weighed up the pros & cons and decided to take them. I'm sorry you are having troubles with your joint pains, it can be quite debilitating, but I don't feel I have anything to report. Nothing has happened that I wasn't told could happen. I'm just trying to do everything I'm advised to do to stay well because I definitely don't want to go on the 'journey' again. Hope things go well for you, all the best,

Hazel xx

Dear 2013

This is Kathy from BCNA's Policy Team.

I am sorry to hear you having such problems with joint pain. It is an issue for many women having breast cancer treatment. JessicaV is right that Herceptin is very effective in reducing the risk of breast cancer coming back. It is standard treatment for women with the HER2-positive type of breast cancer.

There are ways to help manage joint pain, so if you have not already talked to your medical oncologist about the pain you are having you should do so. BCNA's booklet Hormone therapy and breast cancer also has information on things you can to do manage joint pain. Although Herceptin is not a hormone therapy, the tips will still be relevant for you. You can download it or order it from our website, or phone our office on 1800 500 258 and we can post a copy out to you.

I hope that this is of some help to you. All the best.

Kathy

Hi, that sort of pain, ongoing, can be really tiring and frustrating, and leave you feeling that life is hardly worth living. I am sorry it is so bad for you.

But I am also curious to know what action you would like to see TGA taking  in response to hearing about the side effects you are getting from the drug that reduces your chances of dying within the next 5 years by about 30%?

I am asking this because I think you have raised a really important subject. Surgery, chemo, radiotherapy, hormone treatments  and even targetted treatment do have side effects that can vary from critically life-threatening to slightly affecting quality of life.The life of a cancer patient in treatment can be pretty horrible. We are told we should report all symptoms to our surgeons and oncologists.

But I'm interested to know what you think we  want them to do in response. 

I ask this because I suspect there is a communication breakdown at this point. I get the impression that they think they know why we tell them this stuff and what we expect them to do/would like them to do about it. But they are wrong. And we think they understand what we want from them. But they don't. understand at all .

Do we want them to make the discomfort go away by cutting our dose or switching us to a less-effective drug with less side effects, even if it means we may double our chances of dying within 5 years? Or to tell us how to manage the symptoms better and whether we are contributing to the problem somehow?, Or just for them to understand the importance of developing new drugs for the people who will get cancer in 5 to ten years time that do not have these side effects?  Or to offer some sympathy, and acknowledge how hard it is and discuss what impact the physical and mental and emotional symptoms have and to refer us to people who can help us with them, eg psychologists? Or is it just that we want them to be fully informed so they know what is happening, and we trust they will then advise us on what to do differently if that would be wise, and to encourage us to continue and to grin and bear it if that would be wise?

I was a little shocked to hear that a lot of oncologists reduce patient's chemo dose when a patient describes their treatment as distressing, unbearable, upsetting, very painful, and otherwise damaging their quality of life. They do so despite the fact that if it drops too low it will not be effective at stopping the cancer spreading/recurring. They do it because they think this is what the patients want, that patients complain about their symptoms because they want the oncologist to reduce the dose and make the symptoms go away. My oncologist says "I could reduce your dose, but that means we are only holding the cancer back, slowing it down. Is that what you want me to do? It could reduce your life expectancy a lot. " But she does think this is what they want until she explains the tradeoff.

Maybe she is right, and this is what some or even most breast cancer patients who complain about their side effects are hoping for. I know  it is not what I want. But I am just one person.

I would really love to hear what YOU want your oncologist or surgeon to do when you tell them about  troublesome side effects you are experiencing and let them know how horrible it is for you. .

I