Patti B Posted June 14, 2008 Share Posted June 14, 2008 Thanks, Judy- My problem is that I never SIT!!! I have been working in my garden digging, planting, etc. I will NEVER let cancer get the upper hand with me!!! I am just so stubborn - you would think the cancer would give up already!! Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
recce101 Posted June 14, 2008 Share Posted June 14, 2008 Patti B: My left foot is abnormally gross and swollen, blood red to about the sock line, shower water burns like salt in an open wound, and then my foot peels like a sunburn. Patti, that sounds something like the foot problems I had with Taxol/Carbo a while back, except yours sounds more severe than mine, which was bothersome enough! Mine affected both feet, and one was always a little worse than the other, but not always the same one. Initially it was cyclical (would come and go every 3 weeks), then later became continuous. At its peak I had difficulty walking since the soles were blistering and peeling, and anything (even a bedsheet) touching the skin was quite painful. I could go on and on about all the things I tried to make it more tolerable, but I finally got relief after visiting my dermatologist, who I'd been seeing for years because of an earlier problem. He said what I had didn't seem to be a direct side effect from the chemo, but an intense flare-up of stasis dermatitis, which I'd had in rather mild form for a long time and got worse because of the reduced circulation resulting from chemo. Look at these photos (not at mealtime) to see if anything looks familiar: http://www.visualdxhealth.com/adult/sta ... atitis.htm He had me go back on the diuretic which I'd taken a vacation from for unrelated reasons, told me for the 20th time to keep my feet elevated (hard to do if you're trying to accomplish anything during the day), and prescribed a potent steroid ointment to rub into the affected skin twice a day. The latter provided blissful relief, and as early as the first night I was able to sleep with my feet under a sheet once again, but it took months before I was really comfortable again in shoes. Now that part of my anatomy is back to pre-cancer normal, which means my feet and ankles still swell slightly on occasion, I still have brown splotches on my ankles and calves, and I'm still on the diuretic. Maybe some of this rings a bell with you... Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Patti B Posted June 15, 2008 Share Posted June 15, 2008 Thanks, Ned- Yep, those were no pics to look at during mealtime!! But mine are just plain blood red like a sunburn!!! As I told you in my PM response to you (and thanks again for that) I have talked numerous times to the PA but Tuesday I see the doc. He related to the PA that this IS Alimta related and that now that more and more people are on Alimta for extended periods of time, he is getting these complaints. I keep saying OK, I can handle it, just keep worrying in the back of my mind what if its a blood clot??? But they are assuring me that its not, both feet would not be affected. I am going to ask for an x-ray Tuesday just to be on the safe side. Would hate to think I hae gone thru all this and then get a clood clot!! Doctor does not want my diuretic increased because I am already on it for my BP and is worried that increasing it might make my BP too low. He did order me these lovely white cotton compression socks - boy, am I ever looking SEXY this summer!! Especially with shorts on!!!! Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted June 15, 2008 Share Posted June 15, 2008 Patti, Patti, Patti, you don't have to go 24/7 to show you're not giving in to cancer. Anybody could tell that about you even if you did lay down for an hour or so once a day and elevate your feet. They have to be above your heart to really have it work. My husband (who doesn't have cancer) uses chair and couch cushions. About three of them do the trick. Take it easy girl. I'm glad I began to learn to slow down a little before I was diagnosed. It makes it a little easier now to sit down and rest when I should. Judy in Key Wes Quote Link to comment Share on other sites More sharing options...
Larry's Wife Posted June 15, 2008 Share Posted June 15, 2008 I'm not a survivor, so please forgive me if I'm speaking out of turn, but I think Judy makes a good point. Pick and choose your battles. You have heard the old saying: "won the battle but lost the war". Save your energy for what truly counts. Quote Link to comment Share on other sites More sharing options...
CaroleHammett Posted June 16, 2008 Share Posted June 16, 2008 Well, folks. As of today I am an "ex oficio" member of the Alimta Out on a Limb group. Early this a.m. I posted an ASCO abstract (under New Treatment/Clinical Trials) that showed that Alimta has ZERO beneft for squamous cell carcinoma when compared to placebo. This is also apparently true of SCLC (per a posting on Dr. West's cancergrace.org site), but not at all true for all other types of NSCLC (HURRAH!) See my posting at http://lungevity.org/l_community/viewtopic.php?t=37461 for abstract, which includes link to ASCO, which includes a table. This morning I conferred with my oncologist (who was already concerned at high level of Alimta toxicity I was experiencing) and we agreed that barring a miracle, I've had the last of my Alimta infusions (two total). I've also posted at cancergrace.org under Dr. West's post about this subject at http://cancergrace.org/lung/2008/06/06/ ... -followup/ , asking him what else (if anything) he recommends for squamous cell carcinoma patients. I'm going in tomorrow for a CT scan so as to measure growth (if any: miracles do happen) of tumor and lymph nodes since last scan in late April, but in the meantime, I'm looking forward to feeling better soon (so far, I'm still running spiking fevers: at 1:00 a.m., my temp was 101.7; it is usually sub-normal between 93 and 95). Carole Quote Link to comment Share on other sites More sharing options...
jaminkw Posted June 16, 2008 Share Posted June 16, 2008 Carole, I am so glad you're going off the Alimta and have to trust you will find a more appropriate treatment plan. I didn't want to tell you and sound like an alarmist but I went on the cancergrace site yesterday a couple of times looking answers to your symptoms and any link with Alimta. I was really worried about you. Am so glad you've been in touch with Dr West. He's saved my emotional life a few times. I don't know what I would have done between visits to MDACC without Dr West to bounce things off of. He's the best! I'll be checking in there later. Besides the temp, are you feeling any better at all. Hang in there friend and know I'm here for you. Judy in Key West Quote Link to comment Share on other sites More sharing options...
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