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Living with Polyneuropathy CIDP, GBS, & CMT

Huge health change


#1

On January 2 2015 I was on vacation with my family in Tampa Florida when I became ill. On 1/2/15 a CT and MRI identified a tumor in my brain and I had surgery to remove it. A few days later they informed me that it is a Glioblastoma and was malignant. I am now seeing Oncologists and getting ready to start chemo and radiation.

I have asked multiple doctors if my CIDP could possibly have triggered this and have been told it is highly unlikely the CIDP had anything to do with it. They state that many people have autoimmune diseases for many years without other complications.

Very disappointing to get this news. Please keep me in your thoughts and hopefully the treatments keep it under control.


#2

Very disappointing indeed, Rfisher, and I hope the docs will take good care of you. It is good that it has been removed. Hopefully, the chemo will do its work, and you get a very long remission. We'll be thinking of you.


#3

Sorry to hear that. Will keep you in my thoughts and prayers!


#4

Rfisher, sending you best wishes, thoughts and prayers for treatment and recovery.


#5

I have problems with my heart which my Nero says is not related to my CIDP? Prayers for you


#6

It’s hard to hear such shattering news. I will definitely keep you in my prayers.


#7

Rfisher, Most important thing is that the tumor is gone! Now, you move forward. The treatment will take care of the cancer & hopefully beat the CIDP into remission too. I can tell by your post that you’re an amazingly strong person who’s had to deal with more than any one person should have to deal with. Keep fighting, spoil yourself & let everyone else spoil you. Rest. Meditate. We are all here for you whenever you need a friend.


#8

I am so sorry to hear this. I will add you to my prayer list.


#9

Sorry to hear about this. believe it or not, take comfort that they could operate & remove the tumour, others haven't been as lucky. thoughts, prayers & positive healing wishes to you. stay positive & strong.


#10

Stay as positive as you can. Swimming helps me.


#11

Sorry for your diagnosis. Only thought is that the two treatments I am on suppressive my immune system. Steroids and IVIG. I don’t know what treatments you are in. Good luck. Keep us posted


#12

Very sorry to hear about this Rfisher,

its good news that the surgery was a success. hoping that the treatments keep it under control for you.

I will be thinking of you mate!


#13



sussex-man said:

Very sorry to hear about this Rfisher,

its good news that the surgery was a success. hoping that the treatments keep it under control for you.

I will be thinking of you mate!


#14

Well that's terrible news. I want to ask... were you on any medications that could have caused the tumor?


Wishing you the best as you go through still another challenge.

- Rosemary


#15

Sorry to hear this Rfisher,

Try to focus on the good things and people in your life they will strengthen you. I'm no expert by any means but you might want to check out Curcumin and Ginger as supplements. Both kill cancer cells, reduce inflammation, and I believe both work synergistically along with chemo while at the same time reduce the side effects of chemo.

Yitzi


#16

Shocking news. My prayers are with you. Send me an email if you would like to talk.


#17

Be careful with supplements. At the moment there are a number of lawsuits against big box stores because the supplements on their shelves do not actually contain the ingredients that are on the label. Supplements are not FDA regulated but are a huge business. It’s not a great situation for patients.


#18

Thanks for all the support. I think I was lucky in some respects. First they were able to remove the tumor and the surgeon was very satisfied afterwards. I also had a MRI a week and a half ago which looked very good according to my neuro-oncologist. Chemo and radiation starts in three days so hope that keeps it under control. My mental attitude has been good and I am keeping a positive attitude. I also feel very good and am doing all the things I was able to do before the diagnosis. Everyone says to stay positive and that is what I am doing. Thanks for your support.


#19

I am so sorry to hear this news. If I could I would reach out to give you a hug, I would. We will keep you in our prayers. We are your community so we are here for you, always!


#20

My thoughts and prayers are with you in the search. My sister went through this two years ago, unfortunately hers was a very aggressive cancer and returned in 10 months. Have you heard of what is called Cyber Knife? That was an option however we did not go that direction and looking back maybe we should have. It is not as invasive as regular surgery and allows more accuracy in removal of cells. Keep you head up and a positive attitude. We are rooting for you.