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Progression after RT
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12/09/2016 01:05
Angetori 
12/09/2016 01:05
Angetori 
Progression after RT

I recently have finished my RT in September for my right hand and both feet. Unfortunately I've had some progression in those three areas plus now have more new nodules on my left hand and more knuckle pads on my left hand.
Seems to me I'm in some kind of proliferation state. I have read on this forum that these "flares" can come and go but I am just curious as to how long these proliferation stages last. In other words, how long can a flare go on for months, days? Years?

The lump on my left foot seems to be growing rapidly, and I am worried how big it's going to get. My understanding is is that they can only grow to a certain size but they can't go on indefinitely . Can they???!!!

I keep worrying if it's something that I'm doing that is causing this flare. I really do take it easy as much as I can on my feet. I wear my trainers and orthotics all the time, I watch that I don't over stress my feet too much, I eat an inflammatory diet and ice every day. My job does require me to be on my feet but I take the opportunity when ever I can to sit and rest and try not to stand. Since LD my activity level is cut by 80%, it's completely changed my life. I have a rolling stool at work and in my kitchen as to avoid pain from standing and walking and progression. I don't think I have been out of my orthotics and asics sneakers since diagnosis. My feet hurt to much in anything else.

The only thing I can think of is that I am on bio identical hormone's for my menopause and wonder if that could be the cause. Although I have spoken to Dr. Eaton and he told me that estrogen is actually a suppressor for collagen. Hence the delayed development for women in getting this disease. Men seem to get it earlier and women seem more likely to develop it after menopause or in peri menopause when estrogen is declining. My LD and DD reared its ugly head as soon as I went into menopause so his explanation did seem to make sense to me.

I am trying to be patient and understand that RT can take a long time to show some remission. I just did not expect this amount of progression.
Bummed out in NJ.

12/09/2016 19:09
dupfortem 
12/09/2016 19:09
dupfortem 
Re: Progression after RT

Hey Angetori,

I don't have any wisdom to offer as I am even newer to this problem than you. I felt bad seeing your post unanswered and know how much stress and hopelessness takes out of us. Like you said I have seen nearly every report saying it takes a year or two before RT really shows it's final effectiveness so I am trying to set my mind to knowing even if I can do it that it won't be instant. Far easier said than done I know. I have had ridiculous amounts of surgery in my life and every one of them took a year or more to "settle" to their final disposition despite the "6-8 weeks" nonsense surgeons tell you. Pain and stress make being patient very hard and feedback into themselves which sucks because we have no other choice but to wait and see. Hopefully the old hats here can give you more useful responses.

12/09/2016 22:35
spanishbuddha 

Administrator

12/09/2016 22:35
spanishbuddha 

Administrator

Re: Progression after RT

Sorry to hear your ongoing concerns. I don't really have much to add to my previous reply in your other thread. One of my hands was worse after RT for several months, but mainly in terms of pain and soreness, I did not experience new nodule progression, but I had surface skin changes suggesting new nodules were seeding. It eventually settled. RT does not work for everyone, it's a mystery why if it was done at the right time during an active phase of proliferation and progression. You could try soaking in very hot water to get the blood flow there, that was suggested to me by ProfS when I had a moan after RT that my hand was not responding. Also some gentle spiky ball rolling massage. But, not everyone takes to either of these, so you will have to judge for yourself. For pain relief you could try pain patches, there are various types, for example Salon Pas.

12/10/2016 00:09
Angetori 
12/10/2016 00:09
Angetori 
Re: Progression after RT

Thank you for your encouraging words Dupfortem and SB. I will hang in there and be patient and hope and pray that I get some good results from my RT in time. Hopefully this is just a bump in this long road. In the meantime I will check out a pain patch/ cream and try the hot water soak.

I am so grateful for this forum, without it I would be lost. Even though we don't know all the answers yet, I still don't feel so alone. Thanks for responding and giving me a much needed moral booster.

Ps: I will be sure to post any new developments in the up coming months.

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