Hello,
I recently discovered I have breast cancer. I had a lumpectomy last week and now I will need radiation. My radiation oncologist is concerned because of the EM. Of course she has never heard of it and she asked me lots of questions. My feet are worse, then my hands. But, it has spread to my head, face, ears, neck, and chest. This only happens when I get in too much heat but gets better when I get cooled off. Has anyone ever had radiation while also having EM? If so, how did your EM react? Thanks.
Miss Patti,
Very sorry to here this I hope that the radiation will not make your EM flares worse. Hopefully your radiation oncologist will consult with another collogue to understand EM this way he can take the best care of you. My EM to started on hands and feet and is now over face ears chest upper arms thighs. Seems over the last 2 years it’s going over more and more parts of my body as well. I will say prayers for you as you go threw this hard time. Stay strong
E
Thank you so much for your thoughts and prayers. I’m relaxing right now at Starbucks with my feet on their cool cement floor! I just had an MRI of my brain and what an experience! Fortunately, the room was cool but my right foot decided to start burning. I was in there over 45 minutes. And it wasn’t one of those open MRIs. I live in a rural area with a small hospital an that’s where I chose to have it done because the bigger city is an hour away…that’s where my cancer center is. But, I will never do an MRI there again! Hahaha! Today my oncologists are meeting at tumor board and will discuss my case. I hope they can come up with a plan that’s the best for me with my EM. Spring has started here. And I remember now why my foot is burning today…at every change of season my feet will take turns burning 24/7 for about a week…sometimes 2 weeks. Does that happen to you? I heave had 50% relief since upping my dose of Effexor but still during seasonal changes my feet go nuts. Hope you have a great weekend!
Patti,
I’m very sorry you are dealing with both cancer and EM. I’m glad you made it through your MRI ok (hope you aren’t claustrophobic…) and that the doctors are trying to work around your EM.
I’m wondering what dose of effexor you are on now? I also take effexor, but actually find that the lower doses (when it is more like an SSRI) is more helpful for my EM … I’m at 112.5 mg now but was at 225 mg in the past. I think the high dose gives me anxiety/palpitations which worsens the burning, but I’m curious to hear others’ experiences.
My EM started a couple years ago when it was starting to get very hot in the spring. I remember my first attack, I thought I was just dehydrated or had heat stroke …
Take care
Hi Miss Patti,
I don’t know if you have read any of my prev posts. Take a look at this link. Low cost which helps EM and looks to have been used with cancer patients. I can only vouch for EM , this drug has given my Daughter her life back.
Thank you, Davipot! I think I will take this to my doctor to discuss it with him.
Hi standing_cat! Thank you for your reply. I have had EM for 18 years. I actually started Effexor after menopause for hot flashes and joint pain and it really helped. I ended up at 150mgs for years. Then I went down to 75mgs and stayed there for years. Until I was reading in this group a couple of years ago about how it helps EM. It wasn’t helping at that dose so I went back up to 150 with no results, then added 37.5 and finally got some relief. That lasted about 3 months and so I upped it again to 225mg and have been there now for about 9 mos. I have had about 50% relief from where I had been when I just lived in agony with constant burning. So, I don’t think I should go lower…at least not right now. In fact, when I said I was burning due to change in weather…it only lasted for 3 days this time. Not 1 or 2 weeks. So that is also an improvement. I just have to get thru cancer now. Have dr appt Thurs and hopefully will have test that tells me if I need chemo or not. I really hope not! My sister had chemo and a friend had chemo and it did things to their feet. Nerve things. I just don’t think I could take anymore of nerve problems with my feet! Oh, and my MRI came back with no cancer in my brain. Have a cool week.
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Thank you, mommaof4nuts! Haven’t started radiation yet. Will let you know! I’m trying to stay strong! Everyone is telling me I am!