Possible Chemo/Cording Correlation
Hello, everyone... I just wanted to mention a correlation I noticed during chemo between chemo and axillary web syndrome, and see if anyone else out there noticed the same thing happening to them.... I know we have some Lymphedema experts on these boards, and thought this might be worth bringing up...
My range of motion with my axillary cording has ranged from very limited to pretty good. My pain starts in the armpit area, pulls across the forearm, all the way down to the thumb. I can't put my arm out straight and lock my elbow in without it pulling in my forearm, and reaching for things on the floor causes pain in the forearm as well as the thumb.
After TX number four, I remember being ecstatic at my PT appointment a few days later, because I was able to clasp my hands above my head, elbows locked, with NO PAIN for the first time since February! By the time my next TX rolled around though, three weeks later, my ROM was very diminished and painful. Again, after TX number five, the range of motion was almost normal 3-4 days after chemo. The cord was still there, but it was not as prominent. My last TX was Tuesday of last week, and at PT on that Friday, my arm felt fine. I am now 12 days past my last treatment, and have pain in my armpit again, and down the forearm, from the cording.
Did anyone else make this connection while undergoing chemo? I'm wondering if this is a potential area for study, since not much is known about cording?
My therapist told me AWS always resolves on its own, with or without treatment, usually within the first year. She wasn't surprised when my ROM returned that first time, but I think she was somewhat puzzled when it returned right away? She had told me before that cording is more common in slender women than in heavier women. I retained a LOT of water with each chemo, especially the last few, even though I was taking steroids. I wonder if there's a correlation between the extra fluids in my arm a few days after those treatments?
Comments
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I had cording in both arms. Noticed a bit after surgery. Was sent to PT (not LE specialist) to get range back. I did end up with LE on chemo and still had cording. Ended up doing PT again towards the end of chemo after I saw an LE MD. Cording got a little better.
Cording is hardly there at all now. My range not as good again but I just had exchange surgery 3 weeks ago. Hopefully the exercises will get it back. I'm not that bad though.
So I'm not really sure if chemo made the cording worse or if that was something that was just going to happen. The stretches the PT gave me really helped.
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Lago, cording in both arms is the pits...feel for you on that, even if it isn't that bad! Hopefully the LE is only on one side... When was your inital surgery? Have you had any time when your cording was gone completely?
I have some exercises, as well as a rubber ball and pullies, and need to start hitting that a little harder, I guess. My onc referred me to an LE therapist after my very first appointment, so I was lucky in that I saw her throughout my chemo. I'm definitely better than I was before I started therapy, but I find that I tend to favor my bad side. That's my dominant side, but I do most of my overhead reaching now with my other side. I'm really hoping my range gets BETTER after my exchange surgery!
I'm not usually very observant about things, but it was really obvious for me...the worse I felt after chemo, the better my arm felt! I wish I would have thought to take some pictures of the actual cord right before and right after my last chemo... Not going to volunteer for an "extra" one just to check my theory out!
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My BMX was August 31st. It's almost gone on the right and gone one the left. You see it in my arm pit a little but it doesn't go all the way down my arm. Ironcially my right arm is the one that doesn't have LE.
My first PT that wasn't an LE specialist had me use a pulley. My LE PT said to stop that and she gave me some more advanced exercises. Ones that I wouldn't have been able to do right after surgery. That really helped with my range and cording.
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Natalie, the timeline you've described sounds familiar.
I have a strong hunch that chemo contributed to a reoccurrence of cording in my case. I had a mast/SNB (no recon) in early Feb., and developed cording 5 or 6 weeks later. I also hadn't recovered complete range-of-motion on my surgery side; so my surgeon referred me to a PT/LE therapist. By the time of the appointment, the cording had resolved.
I started chemo (4 rounds of Taxotere/Cytoxan at 3-wk intervals) in early April. I had no problems with cording or LE-type symptoms until about 3 wks after my last treatment. I'd lost range-of-motion again, and had developed 2 cords -- one of which went from my armpit nearly to my wrist.
My surgeon sent me back to the PT/LE therapist again. By the time of the appointment, the cording was pretty much gone; but I had developed an achy feeling typical of LE and had visible swelling in my thumb web, index finger, wrist, and distal forearm. The therapist worked with me for a couple of months until everything resolved. (She helped me find well-fitted compression garments, taught me how to wrap my arm, taught me MLD, and showed me some good upper-body exercises.)
Anyway, I think there's a link between certain types of chemo (the taxanes?) and cording with or without LE. I haven't seen any good data, though; so at this point it's just an observation. BTW, what chemo regimen did you get?
otter
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Cording usually gets better with time, but it doesn't always go away. It's more than two years since my last CA-removing surgery and I still have noticeable cording. About 2 months ago, a LE therapist did 4 or 5 sessions of myofascial release and gave me some new stretches. It really helped -- I still have cording and tightness, but it is less and I can straighten my elbow and wrist more and without much discomfort. I find if I don't stretch in the morning, I am tight. -- KS1
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Lago, no WONDER we're all so confused about our LE! It was my LANA LE therapist who gave me the pullies, and had me doing those! I don't think we ever get the same treatment...
Otter, I also did Taxotere/Cytoxan, at three week intervals, but I did six rounds.
KS1, I'm sorry you still have issues with cording...good that it is less of an issue, but it still sucks. My therapist also did some myofascial release, but it didn't seem to last much longer than each session. I'll have to check out the SUSO site to see if there are some exercises or links there, because I am miserable today.
I must be crazy, because I think my chemo actually HELPED my cording issue! I don't remember the first three chemos, but for the last three, my arm definitely felt much better after chemo, for maybe a week, before it started tightening up again.
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I sent a link to this thread to Jodi Winicour, a lymphedema expert who has studied cording extensively, and she was really interested in these comments. She suggested that since the cording is an inflammatory condition, that possibly the steroids eased the tightness initially, but it tightens again as the effect of the steroids wears off. She also noted that in all her years of experience she has only seen one patient who developed cording DURING chemo.
Hmmmm. Guess we could add that to the GOOD side effects of chemo,
which are very few. In fact, the only other one I can think of is that mosquitos don't like you while you're doing chemo.
Be well!
Binney -
yamahaMamma there is nothing wrong with the pulleys. My new PT just thought I was ready for the other exercises especially since my range needed to get better. If you still feel a stretch with them they they are working for you.
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Binney, that's interesting. Thanks for taking the time to send a copy of this discussion to a "cording expert."
I really wonder how much anti-inflammatory activity we get from a couple of days of dexamethasone. Dex is a long-acting glucocorticoid, but I don't know if it lasts more than a few days after we stop taking it. (Someone could find out; I'm too lazy tonight.)
Chemo itself has really good anti-inflammatory effects. Most of us can attest that our facial complexions cleared up while on chemo, only to break out again once we were finished. I've read comments by people with psoriasis who said their skin conditions resolved while on chemo, and relapsed when they were done. My onco told me my aches-and-pains from osteoarthritis would "get worse" (she meant reappear) about 8 weeks after my last round of chemo.
So, I'm thinking you could be right about the anti-inflammatory activity from chemo and also from the dex keeping the cording under control; but those effects were gone after 2-1/2 to 3 weeks.
I do have another theory about the taxanes, though, and the damage they cause to endothelial cells (the lining of blood vessels). I read somewhere that the edema from Taxotere is pathophysiologically (love that word!) similar to lymphedema. I can't find where I read it, of course.
otter
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Otter, I saw the reply from the expert--and she is the national "go to" person for cording, and I was kind of surprised that she saw cording so rarely on chemo.
Kira
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Binney, thanks for forwarding this thread to Jody. I wonder if the patient who developed cording during chemo was taking dexamethasone? Is dex standard for some of the other chemo cocktails the way it is for taxotere?
I had already had one chemo treatment when I was referred to an LE PT. If I remember correctly, I went to therapy for the first time a week after my first treatment. I believe she told me I had cording at that first appointment, but again, don't remember all those details. I do know she had not seen a lot of cases of cording. I also hadn't made any real chemo connection until my 4th treatment. However, I do remember after my 2nd or 3rd treatment, when we got home from, my DH started shooting baskets in the driveway. I took the basketball and attempted a couple shots, but wasn't using that arm much yet. I took a shot from the free throw line, and remember something pulling in my armpit area. Within a couple days, I had a PT appointment, and told my therapist I had no pain and full range of motion. At that time, I thought it had something to do with trying to shoot those couple of baskets.
It wasn't until my 4th chemo treatment that I noticed a correlation between chemo and the way my arm felt right after treatment. Tomorrow will be two weeks since my last treatment, and the cording is probably at its peak. I didn't pay close enough attention to how long I had relief after chemo, but I'm guessing it was maybe 7-10 days?
Otter, I was actually quite worried about edema and Taxotere. I have had issues with my ankles swelling for the last 5 years or so, and had read about the side effects of Taxotere, with one being fatal swelling after the 5th dose. I gained 20 pounds during chemo, and I know at least some of it is fluid retention. I quit smoking at diagnosis, so I attributed some of it to that, but good friends think I look "puffy," I have a hard time bending my knees because they feel like they are full of fluid, and I joke that I feel like the Pillsbury dough boy. I'm glad I'm through with chemo so hopefully I can get rid of the excess fluid, and see what effect that has on my arm issues...
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By the way, Binney, darned mosquitoes around here must not have realized I was taking chemo!
We've had a very wet year, and lots of mosquitos (at least for us), and I'm not liking it at all! Trying to talk the DH to moving some place with NO MOSQUITOS! -
YamahaMama I had lots of swelling from Taxotere. I too gained 12+ lbs. 1/2 of that was fluid. It got so bad that I wasn't able to zip up some boots and my shoes were tight. After treatment I was put on a low dose of a diuretic. I'm am going to try to ween off it again starting tomorrow. It's been 6 months PFC. Hopefully I'll be OK. I wonder if this is what started the LE.
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yamahamama - I had BMX last Nov, AND last December and began TCH in Feb. I never had cording or unusual arm pain from the AND until I started chemo. It was worse with each tx - didn't particularly notice any relief with the chemo/steroids itself, but I also only got steroids the day of chemo until the half-way point. I developed a UTI and was treated with antibiotics at the half-way point and developed a rash (I think allergic to antibiotics) so they upped my steroids to the before, during and after dosing. At that point I did swell more from both the steroids and the Taxotere, and started retaining fluid like crazy. I did have the same axillary web syndrome pain you describe. You could draw the diagram right on my arm - it was classic, and I could see the cords in my armpit and at the inner bend of the elbow. I was put on a diuretic at tx #5, helped with the fluid retention but did nothing for the arm pain. A reach in any direction was painful and got much worse if I overheated in any way. This made exercise problematic and I live in FL so it is hot all the time. There were times where the top of my hand and base of my wrist were so painful I couldn't touch them. I returned to work on 7/1 and my job is physical (work in the Blood Bank in a hospital, fast-paced and busy) and was doing a lot of reaching and having a lot of pain. MO felt it was from the Taxotere. I did finally get a referral for the rehab-PT but that appt is not until 7/25 (yes, they are certified!) but I finished chemo 6/2. In the meantime, I see my BS for the post chemo appt and described the arm pain. He thought it was RSD, post-mastectomy pain syndrome. He suggested a stellate ganglia block, which I of course googled. Holy crap, not doing it. Interestingly, within the last week, the arm pain has lessened dramatically. I have to reach pretty aggressively to experience any significant pain, so I am hopeful the issue is resolving. I am still keeping the PT appt though.
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Lago, do you think the diuretic helped you with fluid retention? I've had problems with some shoes being really tight, also--to the point I can't wear some of them, and had been thinking about taking an old diuretic I have, but figured I should probably discuss it with my onc first. I just want to be able to bend my knees again! Also, did you notice any difference in swelling/fluid retention after your exchange surgery? I feel really swollen at the top of my expander right now, and I'm really hoping some of that will go away after my exchange at the end of August...
SpecialK, I guess I don't know for sure whether I had cording before I started chemo, since I didn't go to the therapist until after my first treatment, but I do know my range of motion completely sucked prior to starting chemo. Interesting it was your BS who doesn't seem to think it's lymphedema... When I complained about the numbness and pins/needles feeling in the back of my arm to my BS, he never once suggested it might be lymphedema, and proceeded to tell me the numbness would never go away. My PS told me it should improve, but it could take up to a year. I noticed significant improvement in the way it felt after my very first PT. I loved my therapist, and am totally missing her right now since my insurance decided I'd had enough treatments... That was one appointment I actually looked forward to going to!
I had to google the block, also...I think it was wise on your part to pass, at least for now! Yours definitely sounds like cording, also, and it's probably a good idea you're keeping your appointment, especially since it is taking so long to get in. Good luck with that appointment! I DID, however, see where the ganglion block has some potential for reducing hot flashes for BC survivors! That part intriqued me!
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yamahamama - All it took for me to say no to the block was to watch the video of one being done. When I realized they can't see where the end of that needle is it freaked me out! I would have to be very desperate to do it. I have had hot flashes for 10 years (surgical menopause at 45), even on HRT. I went off HRT on the day of my diagnosis, still have flashes but not that bad. I am hopeful that the PT will do the trick for what is left of my arm discomfort. It really is better, so I also think it was fluid retention related as the MO thought. On the diuretic question - it makes a huge difference for me. If I don't take mine I swell like a balloon.
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I stepped on the scale again today, and am up another 6 pounds since chemo two weeks ago...I'm going to talk to my onc next Monday about a diuretic... My poor ankles are so swollen, I can leave a thumb print in them. Thinking that might be why the arm is so miserable, too.
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