HER2 treatments for patients with autoimmune diseases

[Heidi Bibber]

I am newly diagnosed and three weeks past a mastectomy. My first chemo treatment for hormone negative, HER2+++ tumors will start next Friday. I have systemic lupus and myasthenia gravis and was on prednisone, cyclosporine and then cellcept for many years. My neurologist told me to stop cellcept, because chemo should lower my immune system sufficiently to keep symptoms in check, and to continue with a maintenance dose prednisone. The oncologist agreed but has not really been able to tell me if and how autoimmune problems may affect chemo. If anyone has experience with this, please let me know. I am learning something new each time I read your postings. Thanks for sharing!
Heidi
P.S.: Still have not figured out how to use this site correctly and hope that I am not cluttering up this forum.

[tousled1]

Heidi,

You're doing fine posting and are not cluttering up the forum. I can't give you first hand information about the auto-immune system and chemo but, I can tell you that when I went through my chemo my blood counts, both red blood cells and white, went through the floor. I had to get Procrit shots to bring up the red blood cell count and Neulasta shots to bring up the white blood cell counts. So I guess you could say that my immune system was really lowered during chemo. All the best to you.

[Heidi Bibber]

Kate,
Thanks for your information. It sounds as though there are medications to help with blood counts. I guess it will be a matter of balancing my immune system to make the chemo work but keep it from attacking and causing lupus and myasthenia flareups. I certainly hope it will be possible. I have been reading your postings ever since I found this site and am a whole lot more determined to join this fight.
Heidi

[rinaina]

I too have an autoimmune disease called Sjogren's Syndrome which has many of the same characteristics as Lupus. I was initially diagnosed as a Lupus patient but a few years later, I was rediagnosed given the symptoms and the events that took place. My rheumatologist said that I would do fine with chemo and that because you take steroids usually with chemo, that my autoimmune condition should remain stable. Well, because of my autoimmune disease, I believe I did worse on chemo then I would have. My eyes were affected by increased severe dryness which in turn affected my corneas. Sjogren's patients already have problems with dry eyes and dry mouth and actually, dry everything. I had fevers two weeks out from each chemo treatment and I developed a rash on my upper back and chest that remained until the chemo finally left my system which was about 4 weeks after the last treatment. I received Neulasta injections with my last 2 treatments to help with my white count but I still ran high fevers which made me feel so sick. I am doing much better now. I was told that if you have lupus or some other autoimmune diseases, radiation can sometimes pose a problem. I am now receiving radiation and I have 2 more weeks after this week. I have a rash that just surfaced this week, (4 full weeks into radiation), on my breast but other than that I am fine. I started Herceptin in mid September and receive a dose every 3 weeks. I wish you well and hope you will keep us posted.

[Heidi Bibber]

Rinaina,
I was afraid that there might be potential problems but am glad to hear you are coming through it all right. I hope I will cope as well. I talked to another patient with Rheumatoid Arthritis (autoimmune as well) a little while ago. She told me that there is a silver lining because rheumatic pains, like in lupus, will decrease. I have dry eyes and mouth as part of the lupus. For a while I used cyclosporine drops for the eyes and just plenty of liquids for the dry mouth. It's great to be able to hear from veterans while being so anxious during the beginning.
Thanks,
Heidi

[R.B.]

Please see the posts on omga threes and sixes.

I have seen several links suggesting that these fats may influence risk profiles.

You can search on NCBI, which you will find on Google. Enter the autoimmune disorder and omega three / omega six / DHA / n6 / n3 as separate search terms and I am sure you will find a few bits.

You can search on this site using search above. There is lots on omega three and six.

RB

[rinaina]

heidi, while i was on chemo i had no joint pain whatsoever. other than the chemo side effects I felt great. the steroids given during chemo must have helped with the joints as well but my eyes were an issue and i was on steroid drops for that and i constantly used refresh to keep the eyes moist. I hope all goes well for you.