Tendonitis

[Annehowe77]

I've just been to see a physiotherapist due to ongoing joint and lower back pain.
She has told me that many of her patients are cancer patients and that the chemotherapy affects the tendons of the body, particularly in the feet.
I'd had an ultrasound but there was no evidence of tendionitis in my feet but my tendons wee still really painful.
The physio said the chemo attacks the structure of the tendon but this can be repaired over time with exercise so she's given me a sheet with different exercises to do and an appointment to have hydrotherapy in the hope of helping with my back pain.
Has anyone else had this sort of problem?

[Carol Ann]

Hi Anne,

Yes ... and my Achilles tendons (AT) were already tight and often painful due to plantar fasciitis before chemo. I am going to see about acupuncture this week. I have neuropathy in my feet from the Taxotere, too.

Carol Ann

[Annehowe77]

No-one warns you of all these horrible side effects do they?! You get the warnings on hair loss, nausea etc, but nothing on the muscle, joint and tendon pain. I too have watery eyes, my left one is worse than the right. Hope the acupuncture works for you Carol Ann and thanks for replying x

[Carol Ann]

You're right, Anne! Thanks and I'll keep you posted on how the acupuncture goes. Hang in there!

CA

[suzan w]

During treatment I developed terrible tendonitis in my left thumb! It may sound a bit trivial, compared with what others experience... however, my thumb would lock up and the pain was quite intense. The reason I bring it up is that, almost 9 years later I still have the same issue. Only my left thumb...locks up...excruciating pain...you get the picture!
Now when I was in my year of Herceptin and starting arimidex...I was like an invalid with joint pain so I realize that a thumb is small potatoes. Yet...no one ever mentioned the severe aches and pains side effects...

[Hopeful]

No-one warns you of all these horrible side effects do they?!

Yet...no one ever mentioned the severe aches and pains side effects...

No, no one does. How is a patient to give truly informed consent to treatment, then?

The reason I bring it up is that, almost 9 years later I still have the same issue.

Also, terribly misleading to patients to have them think conditions are temporary when they are, in fact, permanent. If you are going to live another 35 years beyond dx, it is something to take into account from a QOL perspective, particularly since so much of this treatment is given for purely risk-management, vs. active treatment purposes.

Hopeful

[AlaskaAngel]

People get so panicked with the word "cancer" that it is hard to get a genuine handle on it before they find themselves doing treatment for it. An especially "invisible" thing about doing treatment is understanding and realizing that "doing chemotherapy" isn't limited to just the chemo drugs, but includes all the support drugs and imaging and chemo-induced anemia, etc. All of that is not "simple" stuff, but complicated. For example, using some of the antibiotics (the fluoroquinalones) to deal with infections (and sometimes the mostly imaginary "potential" infections that are based on such things as indefinite spots on x-rays) in conjunction with using steroids around that same time, can bring about some things like tendinitis. And being seen and treated in multiple facilities by multiple providers can make awareness of these various factors more limited when trying to keep an eye out for them as a matter of caution. Such things easily get attributed to the following drugs instead, such as the anti-estrogen therapies. It is very difficult to keep it all cleanly managed and separated.

Added:

Part of what happens as a result is that because the percentage of early stage bc that gets any benefit from the treatment is so low, that the unforseen consequences are not taken into consideration by even the providers, who minimize them. So to me, it is even MORE important for those of us who are not "biased" by never having been diagnosed with cancer personally, to openly talk about it all, to let others have a way to take a more balanced view before they find themselves in the midst of treatment that is, as Hopeful said, risk management.

[suzan w]

Very well said Alaska Angel. When I was dx'd I was strongly recommended to make decisions quickly...time was of the essence. Trying to make life altering decisions in the midst of a full-blown crisis...
I wonder if I would have chosen the same path if I had known then what I know now...???!!!

[AlaskaAngel]

Thanks, Suzan.

You and I can't undo what we did. But there are some things about the way it is being done and not questioned by professionals that for me raise genuine serious questions about the ethics involved when it comes to "informed consent" -- especially now that plenty of us have gone through it and there should be enough data about it to choke on.

What is most questionable is the stance that new treatments are done by comparison with a treatment that is so minimally effective on the whole -- chemotherapies.

By now we should have found out whether or not there is a group of HER2 positive patients who would be successfully treated with trastuzumab used without chemotherapy.

As things stand, patients frequently tend to believe the notion that "adding chemotherapy to trastuzumab is more effective", when in reality we do not know if it is the use of the trastuzumab that has made the difference for patients. We have not had the chance to find out whether there is synergy between the two treatments, or even whether any potential synergy doesn't compensate for the added risks with chemotherapy in earlier stage HER2 positive bc.

It could very well be true that something quite less damaging than chemotherapy itself is what is "synergistic" with trastuzumab. It could be due to the forced transition to a menopausal state alone, plus the trastuzumab. And if that is true, there are less harmful ways than chemotherapy to accomplish that.

It is keeping us in the dark ages for treatment, by scaring early stage patients into doing treatment that hasn't been fully analyzed and evaluated.

These are things that are not explained to patients who are only minimally at risk and are being asked to seriously consider treatments that are on the whole not even that effective.

Another question I have is, for the online tools that estimate risk, why is there no allocation of percentage of risk given to the likelihood that for some patients the chemotherapy itself could result in recurrence, since we do know that chemotherapy is a substance that can cause cancer? Health care practitioners who give it have to be very careful about their own exposure to it because it is hazardous.

A.A.