Mary
Forum Replies Created
-
Thank you both.
-
We asked for it but they said since IVig was already started they would not do it…
My sister is really not doing well. Thanks so much for your replies.
Mary
-
Thank you Ashley for writing back. She had IVIG -5 treatments and has had no effect yet. She is no longer a candidate for chemo… I am going to travel next week to see her and hope she is out of the hospital by then. Take good care.
-
Thank you Price. We will reach out to doctor to find out why she made the choice of IVig over plasmapheresis.
-
thank you Price going to read this now.
-
My sister has LEMS…would this only be for people with the illness or can support folks join?
If so I would love too. I am an RN too and work 12 hour shifts so it would depend if I could or not on the day.
Ashley and Price I read everything you guys post. You may not get a response from me but please know you are so great and needed. You are so awesome for doing this all.
Mary
-
Hi Patri
I come here for support for my sister who has LEMS. She is on Fridapse but it does not help enough.
I hope your husband feels the benefits of it soon.
Mary
-
Thank you Price. I guess when looking for different options you kind of reach for anything.
I hope you have a wonderful Holiday Season!
-
Nice to meet you Dorothy and glad you are here.
-
So so…she could be doing much better. The chemo has taken a toll and the LEMS is really tough. After the holidays she may consider IVig…it is such a struggle. Thanks for asking. I hope you are doing ok. 🙂
-
yes thanks for remembering Ashley.
-
Hi Ashley. I am in the group to give my sister with LEMS support. She was 65 at diagnosis.
-
That is great news Debbie. Glad to hear that about the nodule.
-
It does Ashley thank you and thank you to Price again.
-
Oh thank you for the links these are things I am looking for. It seems noone knew of this syndrome when my sister started having symptoms so the oncologist chose to let her get her LEMS symptoms under control since she could not get to the hospital. Living on the 5th floor with no elevator at this time is not good. I will keep these articles and read them. Again thank you for taking the time. I am an RN also but work in an office environment. I am much older than you and did my time on the units. You must be VERY strong. Again thanks for being so kind and taking the time to post.
-
Hi Ashley and thank you so much for responding. My sister is only on Fridapse.
Yes I encouraged her today to call the doc but she didn’t want too and said she felt slightly better. Being long distance and not being able to see how she is doing first hand is hard.
As far as her CA yes we were told if her tumor responds to chemo this time her LEMS should improve.
Her oncologist seems to think immunotherapy she received as this line of treatment exacerbated her LEMS. He has stopped the immunotherapy because of this and she is only on chemo now.
Thank you for mentioning the Mestinon.
Hopefully this is just a set back and she will feel better in the next few days.
Stay well.
-
Thanks-LEMS is such a rare dx. The onc neuro never heard of it-so referred my sister to a neuro specialist in muscle disorders. The original one-onc neuro still wants to see my sister-and now she has the other doc as a referral. She has only been able to do phone meetings so far due to the weakness brought on by LEMS.
-
Thanks Price. Nodules are a very interesting topic and I was surprised when they incidentally found quite a few.
-
Thank you Price. Very informative.