new diagnosis in addition to bc?

Pam P · 09-28-2010, 03:45 PM

I continue to be plagued with fluid build up, rash, severe loss of strength & fatigue. I've been off all chemo since mid Aug. the thinking from my onc. being that I was having a toxic reaction to chemo. But nothing has improved & he's sent me for different tests & different doctors. Today I saw a dermatologist and I think he's really sharp and may get somewhere. He took 2 biopsies of different rash areas and 7 tubes of blood. He suspects a disease called dermatomyositis, a totally separate autoimmune / connective tissue disease. No cure, treatable with prednisone or other drugs I haven't heard of. I won't know if this is it until all the tests come back but the descriptions I'm reading sound exactly like what I'm experiencing. It sounds chronic and not easy to overcome especially with dealing with chemo drugs too. Not good news, but maybe at least we're getting to some answers and some help to relieve my symptoms which are miserable and debilitating right now. I'm also seeing a rheumatologist next Monday. I'll post again when I know more.

chrisy · 09-28-2010, 03:50 PM

Wow Pam!

Something like that certainly would not be good news; except that knowledge of what you're dealing with is good because it can point to some plan of action.

Hang in there

BonnieR · 09-28-2010, 04:11 PM

Even if it is not always what we want to hear, knowing what one is dealing with is always a relief, I think. Because then at least you can make a plan and get into action
And it serves to remind that just because we have cancer doesn't mean we can't get other disorders. Although that has always seemed unfair to me!
Keep the faith.

Mary Anne in TX · 09-28-2010, 04:18 PM

Makes me want to scream that you even have to deal with all this at once! But you're one tough cookie, Miss Pam! Much love, ma

karen z · 09-28-2010, 05:10 PM

Pam,
I am very sorry that you are dealing with this new issues but it really sounds like you found the right doctor and can get some help.
Please keep us posted.
Best,
Karen

Rich66 · 09-28-2010, 05:15 PM

Sure hope they figure that out. As crappy as it is (on a very crappy crapstick), the knowledge might allow the cancer treatment to move forward. Do you have any reasonably easy area to biopsy for chemosensitivity testing? Just wondering if it would be opportune, given the treatment break you were forced into.

Pam P · 09-28-2010, 05:22 PM

Rich - my mets are only in the bones - so I guess no easy biopsy areas. On line I read that if prednisone isn't effective in treating this dermatomyositis, methatrxate (sp) is an alternative. I thought maybe I can get the same drug to treat that & the cancer both - at least for awhile.

Rich66 · 09-28-2010, 05:30 PM

Interesting idea with the methotrexate. Have you had to skip Zometa?

ElaineM · 09-28-2010, 08:55 PM

I was just thinking of you and wondering how you are doing Pam.
It may be upsetting to find out we have one more health problem, but if your new problem can be controlled with medications and perhaps other threatments that is a good thing. I guess one way of looking at it is that it is not more cancer and that is a plus.
Perhaps your Chinese doctor can suggest something if the dermatologist can't suggest something for it.
Hang in there and take good care of yourself.

Shobha · 09-28-2010, 10:02 PM

Pam,

Thinking of you tonight and sending lots for prayers for you.

hugs,
shobha

tricia keegan · 09-29-2010, 01:53 AM

I'm sorry you're dealing with this too Pam and hope they get answers and relief for you soon. x

Trish · 09-29-2010, 03:04 AM

Thanks for letting us know. Hope the treatment ideas work.
Trish

MaryAn · 09-29-2010, 10:51 AM

Hugs pam? Hope you get better soon...at times dealing with symptoms is half the battle

Catherine · 09-29-2010, 10:07 PM

Pam,

Cheers to you for looking for a good doctor and looking for "better" answers. We hope that you can get some relief. You are a brave lady. Keep up the good work.

Hugs, Catherine

Sheila · 09-30-2010, 04:28 AM

Pam
Sorry to hear about the added problem, but glad they are finally trying to get to the bottom of it all. You spoke about Methotrexate, which is what I was on....I had it for Metronomic Chemo with Cytoxin, but it is used in many auto immune diseases and rheumatoid arthritis...my only issues with it was a rise in Liver Enzymes, but it went away after being off for a week...
Always keeping you in my prayers for that perfect treatment...its there for you...never lose hope.

Lori R · 09-30-2010, 04:55 AM

Pam,
I think about you often and although this latest news appears to introduce new challenges, at last you are armed with knowledge and can begin to take the appropriate steps to correct.

You are one smart warrior, as you continued to seek answers and finally found a Dr. some answers. That takes bravery, stamina, courage....all the reasons I look to you for continued inspiration.

Hoping for the right solution and rapid healing....Lori

Jane · 09-30-2010, 10:03 AM

Pam,
I hope the new diagnosis is helpful and can bring you to a better place. You sound as though you have really been struggling.

I have an autoimmune disease called vasculitis and I took high dosages of steroids when I had my first diagnosis. I was incredibly ill and the steroids saved my life, I'm pretty sure. They worked quickly and were most effective. I also have been on Immuran (another form of Methtraxate) for two years now and have had no problems with it. I have not had another flare of the vasculitis.
So perhaps a similar treatment for you will bring good results also.

My main doctor now, besides my oncologist, is my rheumatologist. She is an expert in my type of vasculitis and I am so thankful she is based in Pittsburgh. I think/hope you will find your rheumatologist to be quite knowledgeable on such an immune problem.

Please continue to let us know how you are faring - I'm thinking and praying for you.

Jane

Chelee · 10-01-2010, 02:55 AM

Pam,
I'm glad they think they found and answer to the problem...but I'm so sorry to hear you have to deal with yet another medical issue. Especially one that sounds serious, and makes you feel so bad. I hope their wrong and actually find a much simpler issue that just hasn't resolved as of yet. That last chemo regimen you were on was quite a combination...maybe its just taking longer your body longer to recover? (Crossing my fingers and hoping for the best.) Stranger things have happened.

My heart really goes out to you Pam...it's rough enough to battle with cancer with all the endless appts, scans and what not..now this added on top of it all. I can only imagine how your feeling right now...and it's not good. I will continue keeping you in my thoughts and prayers. (I'm seriously hoping their wrong about this autoimmune diesase and it's just going to take your body a little longer to recover this time?) Sending lots of healing energy your way.

Chelee

ammebarb · 10-01-2010, 07:14 AM

Hello Pam. Hope you are going to have answers soon so that you and your doctors can begin a plan of attack that has you feeling much better.

Barb A.

Pam P · 10-04-2010, 04:10 PM

Today the rheumatologist confirmed that I have dermatomyositis. I start 60 mg of prednisone daily tomorrow. I'm scared of all the icky s/e but sure hope it will relieve my symptoms. I see the rheumatologist again in 3 weeks. I see my onc. this Wed. Am anxious to know how he will coordinate my chemo tx ( and what chemo this will be now) with this added dx.