[Sharona]

Help needed to clarify a few things.

by Sharona on Sat Oct 05, 2013 7:35 am

Hello everyone.
My Husband Eric was diagnosed with multiple myeloma on the 23rd September, He had been in hospital for removal of polyps in his stomach that were thought to be the cause of anemia. We were so shocked when he released 8 days later with his polyps still intact and the diagnosis of multiple myeloma.

We are both Brits but live in Bulgaria, we toyed with the idea of flying back to the UK but decided that due to the speed that they are acting on it over here we would stay in bg. He was admitted 1st October and they did a few more tests and they started his treatment straight away. The language barrier causes a few problems but some of the Doctors speak English. I asked Eric to get them to write down all of his treatment and they did but he can't read half of them. He is definitely on Dex but via IV and also Velcade, There are a couple of other drugs that begin with cyclo but he just can't make out the rest of the word.

He has been in such great spirits and has eaten a tatty more than a pig but today he said he wanted to cry, has a hoarse voice and he said that his nails are blistering and peeling off. Would all these symptoms be down to Dex. Everything he has is given intravenously and he has many bags of stuff each day but apart from the Dex which he knows for certain he is getting, he's not even sure they have started the chemo yet. Eric is not good at asking questions, he says he doesn't want to mither them as they are so busy so therefore I am not getting the full picture.

I would be so grateful for some input, especially re the finger nails and maybe what the cyclo------- drugs could be. I will be asking so many questions when I go to collect him next week but that seems ages a way. He will be admitted every 21 to 28 days and hospitalized for 7 or 8 days each time, they don't do out patients which I suppose is a blessing given the distance to the hospital which is a 5 hour round trip.

By the way Eric is 67 and has had a single heart bypass 10 years ago and he has also been told last year that he has heart failure. Poor Love.

Thanks for reading and may I wish you all the very best on your multiple myeloma journey.

Just editing to let you all know something else that I found out. He has no sign of renal disease, he has just 1 small lesion on his collar bone, the rest of the exrays were clear and he has High levels of IgA (don't know if that is good or bad)

[Wayne K]

Re: Help needed to clarify a few things.

by Wayne K on Sat Oct 05, 2013 11:35 am

I'm not sure what your whole situation is, but even after treatment he will require increased monitoring. I suppose only you can likely evaluate the treatment there and follow up. If it were me I would probably choose where I wanted to stay long term.

[Justine]

Re: Help needed to clarify a few things.

by Justine on Sat Oct 05, 2013 11:49 am

Hello,
This is a frightening place for you both to be in & I agree with Wayne K, where do you want to be long term? I was recently diagnosed with multiple myeloma & the level of it in my body was measured in as 52% para-protein, but that can also look like 5,2 On the pathology blood tests which are done weekly. I'm on Velcade injection twice a week, dex tablets & cyclophosomide tablet every day which is a chemo drug too. I'm worried for you as it's easy for things to get lost in translation in foreign countries, can you get advice from the multiple myeloma foundation in the UK? Or fax the pathology to someone back home, what about medical staff at Brit embassy?

Wishing the best for you both xx Justine

[Denise H]

Re: Help needed to clarify a few things.

by Denise H on Sat Oct 05, 2013 2:49 pm

Hi Sharona. The "cyclo" chemo drug you mention may well be Cytoxan (cyclophosphamide). Do a search here for general info on it. There is a mention of darkening of skin/nails as a side effect.

My husband is treated at a veteran's hospital which is a 4 hour round trip. I know it gets tiresome, but I never miss his appointments. I work, but luckily I can take the days off to go with him. It must be a bit trickier for you when your husband is always hospitalized for a week at a time, but if you can pin down when his oncologist spends time with him, it would be great if you could be there. It helps my husband tremendously to have me there to be an extra set of ears and to ask questions. This website is an excellent source of information and has given me a greater ability to ask informed questions.

I don't think dex is the culprit regarding the fingernails. My husband has been on a lot of dex over the last six years of his treatment for multiple myeloma, and he has had no such issues. His problems with dex have mainly been insomnia, weight gain and irritability. Of course, everyone is unique and may suffer different side effects.

All the best to you and hubby.

[Dr. Adam Cohen]

Re: Help needed to clarify a few things.

by Dr. Adam Cohen on Sat Oct 05, 2013 8:17 pm

Dear Sharona,
Fingernail changes can be a side effect of a chemo drug called doxorubicin (also called Adriamycin). If he's getting inpatient chemo that requires a week in the hospital every month, it's possible he's getting an infusional regimen that includes Velcade, dexamethasone, doxorubicin, cyclophosphamide, and possibly a couple other drugs. It's important to ask his doctors what he's being treated with and let them know about the side effects he's experiencing. If you're not getting answers or having persistent communication problems then it's worth considering transferring back home once he's stabilized.

[Sharona]

Re: Help needed to clarify a few things.

by Sharona on Sun Oct 06, 2013 3:12 am

Thank you all very much for replying, it has been very helpful. When I go and collect him I will spend time with Professor Goranov and his team and get some answers to the long list of questions that I have written down. I am wondering if maybe he will be tested in between hospital visits at Yambol Hemo unit which is just 40 minutes from us and they send the results on to Plovdiv.

We fully intend to return to the UK once he is in remission, it will break our hearts to leave this wonderful country but needs must. We would both hate to be here when that awful time comes when there is nothing more they can do for him, community nurses and McMillan don't exist here and we will need their support along with the family.

I have spoken to him this morning and he has had a night of being sick and diarrhea but they have given him something to counteract that. I suppose it's not nice being in hospital but I am grateful that he is there for these early treatments as there is always somebody on hand to make him feel better. The next time he's in I will stay over for a couple of days,

Thanks again for your comments and I will be able to let you know exactly the treatment that he's on in a few days time.

Take care everyone, fight the good fight. x

Sharon

[wesley]

Re: Help needed to clarify a few things.

by wesley on Mon Oct 07, 2013 10:33 am

A scratchy voice is a common side effect of Dex. It will go back to normal when dex stiops. Best of luck. I was diagnosed in July of this year. Am halfway through initial therapy on Dex and Rev. Dex only once per week (40 mg). I have been amazed at teh virtual absence of any side effects, save a scratchy voice.

Stem cell transplant at Mayo Rochester in Jan/Feb. We like to go when it is warm