Zazu In The "Hot"Seat Malaphalan "Yikes"

hello kevin I do not wish to sound redundant but we can compare notes as to what the doctors and hospitals do/do diferently so we are a little behind you but we had no remission as the doctors believe going to stem cell transplant quickly they think it would be  better at least for my brother. Today is Monday march 31 and we did the first session of the "high dose" chemotherapy malaphalan yikes this stuff sounds like "diesel fuel" they give us some paperwork on side effects .....whew hope they know what theyre doing.  of course they do.. well they inserted the picc line like 20 feet of it I think it went around his body twice and landed in his big toe. but he never complained and said "not hurtin me yet" and they never did !!  so we are waiting for the first effects of the malaphalan. He never lost his hair through the process so far and never even coughed yet so he thinks this will be a breeze .We will see.......his streingth is amazing and his attitude is fantastic. I will let you know what may be different as we proceed into the depths of stem cell transplant.   good luck to you and him !!   Ron

 

On 3/31/2008 zazu1234 wrote:

hello kevin I do not wish to sound redundant but we can compare notes as to what the doctors and hospitals do/do diferently so we are a little behind you but we had no remission as the doctors believe going to stem cell transplant quickly they think it would be  better at least for my brother. Today is Monday march 31 and we did the first session of the "high dose" chemotherapy malaphalan yikes this stuff sounds like "diesel fuel" they give us some paperwork on side effects .....whew hope they know what theyre doing.  of course they do.. well they inserted the picc line like 20 feet of it I think it went around his body twice and landed in his big toe. but he never complained and said "not hurtin me yet" and they never did !!  so we are waiting for the first effects of the malaphalan. He never lost his hair through the process so far and never even coughed yet so he thinks this will be a breeze .We will see.......his streingth is amazing and his attitude is fantastic. I will let you know what may be different as we proceed into the depths of stem cell transplant.   good luck to you and him !!   Ron

 

Good Afternon Ron;

It appears as though his positive attitude combined with all of our prayers and positive forces have resulted in a successful implant.

That line is a Godsend. Ask him after all the testing, probing, transfusions, etc. if he'd rather do it the old fashioned way.

Diesel fuel is probably less toxic than the MELPHALAN. The side effects to appear take about 1 week. (Which interests me as you have this chemo floating around your body and your body doesn't respond to this foreign matter for a week.) They told me about mouth sores, I had none. However, take exceptional care of his mouth: brush immediately after meals, gargle, gargle and in case you forget, GARGLE. The gave me .9% saline solution to gargle with. Throat sores are next, I got these. Not a day at the beach! Hard to eat, drink or take your pills. I was taking a small dose of oxycotan to numb the pain so I could eat my breakfast. They also gave me a gargle called ULCEREASE. It numbed the throat area so I could swallow.Diarhea and vomiting are a given. Ask for meds for this. Especially before you eat. He must keep his food down or he will lose a ton of weight. His blood counts are going to bottom out. He will probably need transfusions. But with the cath it's a walk in the moonlight.

No matter what he tells you, and believe me fatigue is a reality, get him up and out of his bed walking around. He HAS to!

Great news! Keep him positive during the coming down time.

Take care;

Kevin

 

FWIW, for my transplant, I had Melphalan 100mg/m2 on days -4 and -1.  I was told the key is to suck on crushed ice 30 minutes to an hour before, during, and 30 mins after to avoid the throat and mouth sores.  I sucked on ice pops and poured grape juice in the cups of crushed ice to make it easier.  The nurses just kept the ice coming.   I didn't get mouth or throat sores nor did I have any trouble with holding my food down.  Each person is different obviously.  My curse came in the form of a staph infection when my immune system tanked. 

Good luck to you

Doug

Dear Ron,

Hope you don't mind if I respond to your message.  I am very interested in the whole process of stem cell transplant, as my husband will probably be having one and all information helps.  If you could pass along what your brother experiences, it would be most helpful.  Kevin has given us so much good information.  All of it certainly helps us as we make the decision about transplant.

Thanks.  May God be with you.

Jan

thank you all for your prayers and best wishes for my brother... As you all know we are at Yale. on wednsday we arrived at 8 am we went into a private room and the stem cells arrived (about 300 degrees warmer) he was hooked up to a machine ,this machine had 6 bottles ,some clear some orange and some opaque they used both sides of the picc line. after about 40 miniutes we were done, no shakes no nausea didnt know it was over untill the doctor came back and said "ok see ya" What? done? yes done. the only way we knew it was truly over was the smell I can say it was awful it smelled like thirty men that havent showered after a 100 degree days and packed into a volkswagon and they all ate curry for the week!! WHEW we removed the tubes and we were on our way. the falllowing day he went for a ride through the country in his 1950 ford convertable, We had a nice day. today at Yale again  he received a shot of nupigen (sp) and we were on our way..His white count is falling as expected but all his treatment is on an outpaitent bassis. Saturday we may need a transfusion but not for now.He is doing very well and seems to tolerate the chemo quite well. we are using Lyrica for neuropothy with fantastic results .  I suspect the days ahead will be more difficult but we will have to see...............  Ron

Good Evening Ron;

the only way we knew it was truly over was the smell I can say it was awful it smelled like thirty men that havent showered after a 100 degree days and packed into a volkswagon and they all ate curry for the week!!

After my SCT they claimed I smelled like creamed corn. I didn't notice it at all. But many of the medical staff said that most patients emit that smell.

Great news that Charlie did so well!

Take care;

Kevin