Hi Di!!!

Gosh, I am sorry I missed your posts and evidently your trip to Germany. I think I got your user name mixed up with someone else, because I was watching for you! I will read your posts now on News from Germany! Do you have ot go back for a second round?

What was your method of overdoing???I am so glad to hear your posts on how you are doing!! I agree it helps this forum is very useful with info on what is "normal". I am afraid what I have learned from some of my postings though, is what is "normal" for me, might not be normal for you. I would post more about what has happened with me but wouldn't want to alarm anyone....my situation involved other medical issues though.

I am sooooo sorry your feet are hurting!!! For me, I wasn't sure if it was due to RT or just being much more "aware." I have decided after some time....definitely from RT. My feet seem much more reactive to cold...but then it was winter here. I used Urea 20% nightly, tried to stay off my feet as much as possible, and even wore shower shoes so my feet weren't touching cold tile. Even now, though, if I go into a restaurant, air conditioned and tiled floors...(of course wearing my most comfortable shoes: flip flops) my feet react in pretty short order.

I did find elevating feet as much as possible helped some. Mine were extra lumpy too! My thoughts were that they were very swollen before RT (one big mass) and after radiation I could tell there were actual cords and nodules! With more time passage I seem to be able to identify even more individual nodules!

I have not gone back for second round to CA yet; originally because the inexpensive hotel I stayed at was booked up till the end of April. But now I also need to evaluate my reactions to RT vs. my feet. I think I would like to at least email Dr. S before making a decision on returning as well.

My feet seem to be returning to their original discomfort level now as compared to after RT, although they can act up on occasion. Was it difficult to walk prior to RT for you too?

PLEASE keep us posted. I CARE and I know many others do too!!!

HUGS, Debbie

Cyclist:

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Hi Debbie
I've been wondering how you are? I've had my first treatment cycle and had to smile when I thought about your story about lining up for sprinkle cupcakes while I did my version of overdoing things .

Now we don't know if we're suffering more effects because we've both got aggressive ML or whether we just over-did things!

My feet have been a bit more to manage than usual, worst at night as before, but more tender during the day as well. I've posted the details in a new thread call News from Germany. In a nutshell, my feet feel tight, hot, sore pretty much all over and extra lumpy, so it's affecting me when I walk. My skin doesn't appear affected. but I've been looking after it with 20 % urea creme.

It's good to get support from fellow sufferers and also to let others know that what they are experiencing is normal. I had a big day today and my feet were aching quite badly so I had to jump online to find out if it is normal or if I should consider getting some medical advice. Now, after reading posts from you and some others, I think it's just that I'm tired and so are my feet. Thank you for sharing your story!

(Edited to let others considering treatment not to be scared by this ibuprofen is enough to help the aching. My feet recover overnight and feel much better in the morning).

I hope your second treatment cycle is better and you can hold back on doing too much this time! I know I will be more careful next time

All the best
Di

Hi Debbie
You didn't miss anything as I didn't post anything from Germany (quiet for a change!)

I kept quite busy and was very tired because of the 10 hour time difference. My method of overdoing it was driven mostly by my curiosity and bad sense of direction! I ended up seeing a lot more of the city than anticipated... about 10kms of walking one day, which really was a bit much for feet undergoing the stress from RT.

I think a lot of people are probably being kind by trying not to worry anyone, but really it's good to share your stories, both negative as well as positive so people can get the whole story. Also, it's so much easier to go through it when you have support from others who are a bit further along and have probably forgotten this stage. I hesitated too, but then decided to share. Happy to private message if you prefer.

My feet were okay before the treatment. I learned to manage the symptoms by limiting exercise and massaging the nodules. My symptoms had only just started though and the nodules were huge and actively progressing, so who knows what I would have ended up like if I had left it for a few years . This fear prompted me into action!

Your nodules got quite large - were they still actively progressing? Did the physician give you an indication of how much you can expect them to shrink down, reduce in symptoms and what degree of functionality you can expect to get back?

Take care!
Di