new diagnosis in addition to bc? - Page 2

chrisy · 10-04-2010, 04:57 PM

Pam,
Sorry that you have had to deal with this...but again, glad you now have confirmation of what it is and a plan of attack. The icky side effects can't be worse than what you've been going through.

Might seem like a bit of a reach as well as commute, but now that you know what the 'reactions' are and will presumably feel better on that front, if you were at all considering TDM1, this would be the time to bring that up.

As you no doubt are aware, they are still accepting patients into the EAP screening process until October 31; with approval now seemingly quite a ways off this might be your best opportunity. I know the travel seems daunting, and it is, but TDM1 is a formidable therapy.

Keep us posted on your decisions, and I'm sending positive thoughts and prayers that the prednisone will bring you quick relief from the other thing (who knew there were words harder to spell than all the cancer words???)

Chris

Pam P · 10-05-2010, 04:18 AM

Chrisy - I WISH I could still pursue the tdm1 but I can't qualify. The last chemo, xeloda, tykerb, herceptin, was clearly working for me according to the pet scan - even slight improvement. According to the tdm1 nurse where I was applying I have to show failure on the current chemo to qualify for the eap. So the tdm1 will be out of my reach - & who knows if I'll still be here in 2013 when it's approved. So unfair. The good thing is xeloda/tykerb are maybe still okay for me to try again since we now know that all my other symptoms are not due to adverse reaction to them, but to this different disease, dermatomyositis.

I took my 1st dose of prednisone this a.m. I sure hope I'll feel some relief soon and am hoping I can combat the cravings to eat. I've already gained 15 lbs from the fluid (maybe the predinsone will help get rid of that?).

StephN · 10-05-2010, 11:41 AM

Dear Pam -

You have been through a lot in trying to get a specific diagnosis for all your symptoms that emerged this year.

Many of us here have had muscle weakness and joint swelling and pain either during or after taking our treatment drugs.

Yours seems to be worst reported on this board. But, when I was looking into my rhumatic symptoms, all the test came back negative for anything they could peg. So, I was treated for an "unspecified connective tissue disorder."

My research then found that this type of disorder was often associated with cancer patients.

Now I found something specific to dermatomyositis:

"The cause of polymyositis and dermatomyositis is unknown. Viruses or autoimmune reactions may play a role. Cancer may also trigger polymyositis and dermatomyositis. It is possible that an immune reaction against cancer may be directed against a substance in the muscles."
(http://www.merck.com/mmhe/sec05/ch068/ch068e.html)

The "immune reaction against cancer" part I find interesting and hope there is some research in process that can find a way to prevent this from happening. Our bodies are so complex and the least little thing can tip the balance.

Send you my strong prayers for relief with the steroid. One caution - staying on steriods can weaken your bones. With bone mets, be as careful as you can.