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05-13-2014, 11:06 AM
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#1
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Member
Join Date: Apr 2014
Posts: 13
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Tendonitis
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?
__________________
Dx 4/12/2012
IDC grade 3 Stage IIb 1.6cm
DCIS with comedo necrosis 2cm
Lymph nodes clear
ER-/PR+ HER2+++
Bilateral mastectomy 25/01/2013
Evidence of Lymphovascular and neural invasion
4 cycles of Docetaxol and Carboplatin
15 cycles of Herceptin
Treatment finished 2/04/2014
Not yet started Arimidex due to side effects from Herceptin
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05-13-2014, 12:18 PM
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#2
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Senior Member
Join Date: Dec 2013
Posts: 1,045
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Re: Tendonitis
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
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.
Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".
Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.
Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.
Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.
Nov 25, 2013 Begin 6 rounds TCH.
March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!
March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.
March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)
April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm
May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)
June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia
Nov 17, 2014 FINAL Herceptin!
Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.
Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.
Dec 17, 2014 Port is OUT!
January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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05-13-2014, 01:34 PM
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#3
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Member
Join Date: Apr 2014
Posts: 13
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Re: Tendonitis
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
__________________
Dx 4/12/2012
IDC grade 3 Stage IIb 1.6cm
DCIS with comedo necrosis 2cm
Lymph nodes clear
ER-/PR+ HER2+++
Bilateral mastectomy 25/01/2013
Evidence of Lymphovascular and neural invasion
4 cycles of Docetaxol and Carboplatin
15 cycles of Herceptin
Treatment finished 2/04/2014
Not yet started Arimidex due to side effects from Herceptin
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05-13-2014, 03:35 PM
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#4
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Senior Member
Join Date: Dec 2013
Posts: 1,045
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Re: Tendonitis
You're right, Anne! Thanks and I'll keep you posted on how the acupuncture goes. Hang in there!
CA
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.
Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".
Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.
Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.
Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.
Nov 25, 2013 Begin 6 rounds TCH.
March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!
March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.
March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)
April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm
May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)
June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia
Nov 17, 2014 FINAL Herceptin!
Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.
Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.
Dec 17, 2014 Port is OUT!
January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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05-13-2014, 06:13 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Re: Tendonitis
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...
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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05-14-2014, 06:17 AM
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#6
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Re: Tendonitis
Quote:
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No-one warns you of all these horrible side effects do they?!
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Quote:
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Yet...no one ever mentioned the severe aches and pains side effects...
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No, no one does. How is a patient to give truly informed consent to treatment, then?
Quote:
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The reason I bring it up is that, almost 9 years later I still have the same issue.
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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 |
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05-14-2014, 01:07 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Re: Tendonitis
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.
__________________
Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
Last edited by AlaskaAngel; 05-14-2014 at 01:14 PM..
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05-15-2014, 03:07 PM
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#8
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Re: Tendonitis
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...???!!!
__________________
Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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05-15-2014, 04:25 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Informed consent
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.
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