Nicky,
He said I need to be very careful about being in the sun and always wear sunscreen since I've had malignant melanoma. He felt like the risk was equal with Imuran or Cellcept. I think you're right that most everyone has a family history of cancer somewhere.

Yes I was thrilled to read Lizzie's posting. I am so much more hopeful now. I would LOVE any type of remission!!!
Thanks for the good wishes Nicky!

Maurice,
I am sorry to hear you haven't had much response to Cellcept. That must be so frustrating. Thanks for letting me know.

Juanitad,
I'm glad you haven't had any side effects and noticed a difference in about 3 months. That is encouraging. Thanks to both of you for the info.
Kendra

Tyson,
Oh boy, I hope the cellcept isn't the cause of your heart problems. That is so scary!!! You said you have been on it since Jan. How long did it take before it kicked in and you started seeing improvement?
I hate to hear of all the side effects you are having. I appreciate you sharing them though so I will be prepared if I have any of them. Yes it is soo scary but I'm trying to stay positive. Thanks Tyson and you take care of yourself. Sounds like you are having a rough time right now. Hopefully things will settle down for you soon. This disease sucks huh? Please keep us posted on what they find out about regarding your heart issues.
Kendra

Cellcept carries an increased risk of skin cancer and lymphoma. If you have either of these cancers in your family, you might need to reconsider whether or not you are willing to take the risk. ANYONE who takes Cellcept, should use SUPER STRENGTH sunscreen at ALL times -- due to the skin cancer risk.

Cellcept is known to be hard on the kidneys -- your doctor SHOULD run regular kidney tests before and during treatment.

I don't want to be the "devil's advocate", but I MUST note that Cellcept failed in clinical trials for the treatment of MG. I know that lots of MGers and neuros still swear that it does work.

This is a very difficult decision -- I feel that it is important that you have all of the facts. Kendra, I do NOT envy your task.

Kendra, you've had malignant melanoma and they are putting you on Cellcept??

If you needed a transplant you would NOT be eligible because of your cancer history -- because the drugs LIKE Cellcept (which IS a transplant anti-rejection drug) would make it VERY likely that your cancer would return. I'm sorry, but I am APPALLED that your doctor is even considering letting you take Cellcept!!!

I know that MG is awful -- but, it isn't KILLING you, right?? Cellcept, in this case, could. I usually don't just jump OUT and say stuff like this -- Like trying to mind somebody's business -- but, Kendra -- this is scaring the "poop" out of me!!!!

Jana,
I am glad you jumped in here. That is why I posted it. I want to hear the good and bad. My history with malignant melanoma is the main reason I am so scared of this drug. Part of me is terrified to even start it. The RX is here but I can't seem to make myself take one. I felt better after reading everyone's posts but felt scared all over again after I read yours. I don't mean that in a bad way at all...it was probably good you did post it because it made me remember where my biggest fear came from. I remember reading that in patients with a history of melanoma it increases your chances by alot. I can't find that article again but know it was enough of an increased risk to really scare me. I was very lucky when my melanoma was found. I actually went for a little spot on my nose that I was worried about. The Dr looked at it and said that is fine but I'm worried about that one. They biopsied it that day and it came back malignant. He told me how lucky I was that it was caught. This was in Nov. and he said if I had come in in the Spring it might have been to late to save me. It had already gone as deep as it was going to and was just starting to spread out. Since then I have had 3 other spots removed that weren't malignant but came back that they would have been in time. Ok Jana thank you for your repsonse. Just typing this makes me remember how thankful I was that they were able to get it all and you're right that Melanoma is a killer for sure! I guess I need to do some more serious thinking.
Kendra

Hey Kendra,

I don't take Cellcept so I can't add anything to what has already been said. I just wanted to tell you I understand your fear of taking it. You may do very well on it as others here have and how great would it be to eventually get off the Pred! I wish you all the best and hope you feel great on it.

Hugs,
Pat

Kendra, Wow you sure have a difficult decision to make. I wasn't aware that you had skin cancer. I'm with Jana, using Cellcept can contribute to you getting skin cancer, and if you already had skin cancer, I'd be worried as well.
Does your Neuro know about your skin cancer, and if yes, what did he say?
Imuran did make me violently ill, I told my doctor I'd rather go up and meet St. Peter at the pearlies than take that stuff again. I had such a violent reaction.
I am super sensitive to meds, so I was terrified to try Cellcept. I did have really good results. And little, if any side effects, but now that I'm thinking back, it may have made me a little nauseated at first.but that's it, and it did work fast for me.
Cellcept didn't cause my kidneys disease. I was doing labs constantly, and nothing showed up. Two years before starting Cellcept, I had some stuff show up pointing towards a kidney problem, but then it didn't show up again.
Once on the Cellcept, my labs came back with in normal range, and then one day it was off the charts. Even during that sunburn feeling from with in my kidneys, nothing showed up. It took a while.
I had a kidney biopsey, and even that didn't tell them too much. For two years I suffered with high pulmonary hypertention numbers.(Pulmonary Hypertention is a terminal cardiac/pulmonary disease) So there were many things collectively they believed was the cause. Lack of Oxygen, high blood pressure..Prednisone induced diabetes...etc.. No one believes the Cellcept harmed them, just really really aggravated an undetected disease.
Right now, CycloSporine is the only thing I can take, but it too has a history of causing problems with the Kidneys, just the others are much worse for me. IVIG is deadly for me. I really do understand your concerns.
They even believe Prednisone may have caused the problems with both the PH, and kidneys, and yet, Prednisone is used in kidney disease. Prednisone can be just as deadly as Cellcept. But I have to still be on the prednisone. I just have to watch the amount.
Some times it feels like we're between a rock and a hard place with all this.
If you forgot to talk with your doctor about the skin cancer, call him, and ask. He'll be glad you did. It also depends on how bad off your MG is.
Boy, I'm so sorry you are going through all this. It's not easy.
Much Love, and
Lizzie
P.S. I'm one of those who have a love/hate relationship with Prednisone, and would rather not see anyone on it. I may never be able to get off, my body just won't let me,so really I'm probably a bad person to comment about Prednisone.

Kendra,

I feel kinda worried too...I had forgotten that you had skin cancer (I was remembering how you told me about the family history, but forgot that you had it yourself! Sorry!)...

What sx have come back? I don't know...I have to agree with Jana that this seems really, really risky...But I know you want off the prednisone asap...I completely relate to your situation! What to do!?!

They say that thymoma is benign, but it can come back, and if it spreads, it's tougher to treat, so I'm sorta in the same boat as you...MY doctor says that all thymomas are malignant, but it's just that they grow slowly and are usually found before they've spread...'So if one were to get a tumour, they'd want that one' were his words...But immunosuppresants make the body less resistant to cancers, so this would seem to increase the risk of it coming back, or some other type, that much more...

I seriously completely understand where you're coming from...It's a rock and a hard place...I'm going tomorrow to see another neurologist for a second opinion on treatments, but I have a feeling he'll suggest Imuran too...

How much Mestinon are you on, and what are the main sx coming back? Maybe you can try increasing mestinon with the guidance of your neuro.? I have this dream of trying one of the immunosuppresants for just long enough that they get rid of the sx, and I'm lucky enough to not have side-effects, but the possible risks put me back to the 'sitting and thinking on it' place.


nicky

Kendra, somehow I missed your post about the skin cancer. Did I understand correctly that your neuro knows you had it? Boy, you certainly do have a difficult decision to make. I'm so sorry you have so many things going on at the same time. I'm sure you will make the right choice for you. I'll be keeping good thoughts.

Big Hugs,
Pat