Kendra, This is indeed a very difficult decision for you. Have they thought about IVIG? I have a headache tonight so I have only skimmed through all the posts. Those drugs are a significant risk for some cancers. The thing is that you have already HAD a cancer. That's a bit different than a "maybe" situation. Sunscreen will prevent further skin damage, however, most of the damage to your skin may have already been done before in your life.

I hope you can figure out what to do. Talk to your doctor again if you need to. Get a 2nd opinion from an oncologist (if you still are in contact with the one who handled your skin cancer, call them).

Good luck.

Annie

Hi. I've been on Cellcept for about three years. When I read the possible side effects I also became terrified. I now take 2000 mgs a day and have no bad side effects that I'm aware of. I say that because I take quite a few drugs and have multiple conditions. So who really knows!! LOL

Kendra,

I feel worried for you, too.

Are you feeling well enough to suggest to your doctor to wait before starting Cellcept...to be sure all of the effects of the Acrylin (sorry I don't know how to spell it) have worn off first. Maybe you won't need the Cellcept if give your body time to adjust to no more Acrylin.

Sometimes I feel like doctors are too quick to start us on new medicines, even before a previous medicine has time to take effect.

I know that I can currently manage my MG with Mestinon and I am glad for that. If I were still in bad shape, then I would consider another drug, even if it had a risk of cancer. I haven't taken Cellcept or anything besides Mestinon for my MG. This is a difficult decision to make. Definitely worth the time to think about it and consider all your options before making a decision. I wish I could be of more help. You are the one that can make the best decision for you.

"Since then I have had 3 other spots removed that weren't malignant but came back that they would have been in time."
Well, Kendra, I'm on a roll today. I'm just gonna "spit it out"!! Do NOT take this stuff!! If you have "active" pre-cancerous skin lesions you are literally putting your life in danger. You could have these lesions in places that you can't see -- in nailbeds, on your scalp, in/around orifices (nose, ears, etc.), around genitalia -- and on Cellcept, it could get out of control before anybody had a chance to do anything about it. EVEN with a full body scan every month. EVEN if you shaved your hair so that they could see your scalp........

ONE malignancy removed and NO other lesions is one thing -- but, removal of lesions that they knew would/could grow into melanoma.............NO, NO, NO!!!

Sorry, I've grown fond of you -- and would like for you to stay around!! (Yes, I am bossy -- but, usually with good reason.)

(((HUGS)))

I don't know if this has come up, but there's a study questioning the efficacy of CellCept for MG. You can see an article about it here: http://journals.lww.com/neurotodayon...bo_for.16.aspx . As you can see, it's not clear whether the results of the study are valid. But it may be something to take into consideration.

Abby

Thank you all sooo much for your input and advice. This has been one of the hardest decisions I ever had to make. First of all I called the Dr who treated my melanoma today. He said the risk of developing melanoma is low, to watch for any new spots or changes in moles and to come in immediately if I see anything. If not to continue with my once a year skin cancer screening. He said he felt the MG needs to be treated and the risk is low. Even after hearing that I'm still scared to take it. I started an antibiotic on Mon for a throat infection and think alot of the weakness is coming from being sick. So I have decided to wait until I finish the antibiotic and see how I feel then. If I feel alot better I am going to call the Neuro and tell him and explain I'm not ready to try the cellcept yet. If I don't get better I will rethink this then. My fear is that if I don't give it a shot my Neuro won't want me to lower my pred anymore. I want off it too!!! Do any of you have any advice on how to make him understand that I really don't want to take either unless my MG gets so bad I can't deal with the symptoms.

This is from a Cellcept website:

Before you start to take CELLCEPT:
Tell your doctor if:

1.you are pregnant or plan to become pregnant
It is not known whether CELLCEPT is harmful to an unborn baby when taken by a pregnant woman. There have been cases of birth defects reported in patients exposed to CELLCEPT in combination with other immunosuppressants during pregnancy. If there is a need to take CELLCEPT when you are pregnant your doctor will discuss the risks and benefits to you and the unborn baby.

Women of childbearing potential should have a pregnancy test to show they are NOT pregnant one week before starting to take CELLCEPT.
2.you are breastfeeding or plan to breastfeed
It is not known whether CELLCEPT passes into breast milk. If you are taking CELLCEPT, your doctor may advise you to stop breast-feeding, or to stop taking CELLCEPT.
3.you have any other health problems, especially the following:
•severe kidney disease
•a history of serious stomach or bowel problems (such as ulcers or bleeding)
•you have a rare disease such as Lesch-Nyhan or Kelley-Seegmiller syndrome
•a history of sun spots or skin cancers
4.you have phenylketonuria
You may not be able to take CELLCEPT SUSPENSION as it contains a source of phenylalanine.
5.you are allergic to any other medicines, foods, dyes or preservatives.
If you have not told your doctor about any of the above, do so before you start taking CELLCEPT.

If you had basal cell or squamous skin cancer history, I could understand the relaxed attitude of your docs. But, you had melanoma -- so, I am totally BAFFLED at your doctor's advice.

Heck, Kendra, I'm NOT a doc -- maybe I'm getting all worked up over NOTHING.

I DO think that your MG is worse right now because you are sick -- and will be for a couple of weeks afterwards.

I think the only way to understand why a neurologist would consider it okay for someone to take a drug that might give you more skin cancer is that their concern is the MG. Stupid reason but I seriously think that's how they think: "I have to make the MG better." Instead of thinking: "I have to make the whole person better."

I would ask if the oncologist understands the risks of Cellcept, which not all doctors do. Maybe also ask your pharmacist what they think.

Kendra, Cancer can kill you a lot faster than MG can (most of the time). I hope you will give this some more thought. I know you are thorough and smart - just trying to look at this from all angles. I hope you do get better on the antibiotics.


Annie

Kendra, I have been on CellCept since January 1 for Ocular MG and have had no problems at all. I had my CBC checked weekly for a month, every other week the second month and now once a month to make sure the white count doesn't go down too low. So far it is hasn't. Good luck! Kathie Glenn

Kendra,
I have been on Cellcept for five years and have not had any problems while taking it BUT I do not have a history of skin cancer like you do. I can understand your concern and it is VERY VALID. I hope you are not feeling as if you are being paranoid because you are not. You are being cautious.

I agree with Annie that many doctors really only focus on their specialty instead of how they can make the "whole person better". That is one reason why I have began to research on how to make my whole self better. I realized during my relapse that the only person on this earth who really cares about me is ME. I know my body better than anyone else. My Primary Care Physician and my Neurologist acknowledge this too and are happy when I am very detailed about what is going on with me healthwise not only Mentally but Physically during my appointments. I have added my Spiritual aspect as well. They also are pleased with my questions because as good as they are, they admit that I bring up concerns that they don't even think about.

I would keep discussing this with ALL of your physicians until you are comfortable with starting Cellcept. I too would probably wait until you finish your antibiotics because as you have stated and all of us with MG know, any type of illness can make our MG worse.

I was only on Mestinon for the first 9 years of my disease (was diagnosed in 1995) But in 2005 I began taking Cellcept and also started IVIG because I had my first real relapse. It was my decision to proceed with both as my Neurologist left it up to me to decide additional treatment. He provided the options and I made the choice. Of course MG is very individualized so the state of my MG when I started Cellcept may not be what yours is now.

Hard as it is, try your best not to worry too much as that can only make everything worse. I know from experience. It's tough but follow your gut instincts. They are there for a reason.


Blessings,
Shari