Hi I have a friend who has CIDP for the past 4 years and has been successfully treated whenever she would have a flare up however she got Breast Cancer last year - she has had a masectomy and chemo and radiotherapy. Breast cancer has now been treated successfully but her CIDP has come back again and her Consultant has advised her that the 3 types of treatment for CIDP could bring back her cancer. Without treatment for the CIDP it is progressing - she cannot feel her feet in bed - and her fingers feel like she is holding 'barbed wire'. Has anyone had a similar experience ?I don't know the type of treatment(drugs) she has had for either the Breast Cancer or the CIDP
Happy Holidays Mary,
I am so sorry to hear about your friend's extremely challenging/frustrating situation. As a CIDP patient myself I know how desperate we can feel to find anything to "quiet" the hellish havoc that we feel as soon as possible so I wanted to respond to you and let you know that I am working on it. I am consulting with several HCP's(health care professionals) before I go ahead and provide any specific information in regards to her recommended course of treatment. I can share with you that the 3 types of treatment for CIDP include: steroids, plasmapheresis and IVIG or Immunoglobin G infusions. Any of, or possibly a combination of the three might have been used to treat your friend in the past.
I promise to get some additional information to you by Tuesday afternoon after many of the specialist's I either am a patient of or are experienced with CIDP as well as Oncology. I applaud your unconditional support and search for answers. Having a friend like you is something that is cherished by those of us that living with CIDP that often feel so isolated because friends and family often do not educate themselves to even begin to understand what we live through on a daily basis, hour to hour, minute to minute.
My absolute best wishes and soulful support are being sent your way. Please have a blessed holiday and I will be in touch.
Warm regards,
Tara
Thank you Tara I have told Anne that I have started this discussion the treatment she was getting for CIDP was Immunoglobin infusions and I think the drug she is on for the cancer is Amoxofin -not sure of correct spelling of this I look forward th hearing further from you. thank you also to everyone who gave expressions of support
Well, I am no doctor, and just speculating here, but one of the common treatments for CIDP is immunosuppressants. These are drugs, such as Imuran, which suppress the immune system. Obviously, if you are fighting cancer, you want a strong immune system. So, no, you would not want to continue this kind of treatment.
However, there are other effective treatments. I currently am being treated with IVIG, which is human immunoglobulin, given by infusion. It is very effective for me, but doesn't work for everyone. According to my limited understanding, this would not weaken the immune system. Also, plasmapheresis works well for some people.
Sounds like your friend needs to have a very serious discussion with her doctor about other methods of treatment, or possibly find a doctor with more experience in this area.
Thanks Bill she is going to see her oncologist during the week think you could be right about finding a doctor with more experience -that was the reason I started up discussion I wanted to see if anyone else was/is in the same situation and how they were being treated
I know that the chemotherapy used can sometimes cause a neuropathy. I do not understand why IVIG would interfere with breast cancer. I cannot think of how the pathophysiology would interfere. Is this one of her options?
Well I don't get what the doctors are telling her. My wife has been fighting breast cancer for 20 years successfully and has had about everything you could imagine in that length of time. There was never any cancer treatment that didn't completely wipe out her immune system and make her susceptible to easily taking on colds, flu, and such. If the person isn't taking cancer drugs then IVIG wouldn't be wiped out. My wife tells me that everywhere she has ever had treatment (Bethesda, MD, Mobile, AL, Knoxville, TN etc) breast cancer patients are given presizdone to reduce nausea and increase the patients energy . I just don't understand that consultants statement. It seems weird.
I have had breast cancer. I think her friend is on Tamoxifen....which is an estrogen receptor blocker. There were many things I couldn't take while taking this drug including many herbs. I hope she was able to find a way to get around this issue.
I am also a breast cancer survivor(for over 15 yrs) I did not have chemo I had a mastectomy. I am currently getting IVig infusions every other week. My neurologist knows I am a cancer survivor and has not seen a link to cancer recurrence in my case. I send your friend courage for her journey and wish her times of peace.