Hello everybody
I have not been encouraged by Doctors etc, to contact other people with MM I suspect because it seems to have many stages and everybody seems to be different. I live on the Isle of Arran in Scotland so have to travel to the mainland for treatment. I am 57 I have 3 childen 20,23,& 24 . Diagnosed in August 08. I am on my 5th and last 28 day cycle of chemo/dex and monthly pamidronate drip. I only had thalidomide for the first month as they thought I was having neurological symptoms. I am going for chemo and to start the growth hormones for stem cell collection, on the 8th feb.
I havent had an easy time on the TABLETS especialy the withdrawls from the dexamethazone also that taste in the mouth ug.and constantly feeling slightly off balance. I have 2 weeks in the month when I take no tablets and I start to feel about normal at the end
Though the consultant at the Beatson Hospital in Glasow in charge of the stem cell transplant had to give me worse case senarios (its funny how 6% seems so much larger than 94% ) I must say nobody has said to me you have only a life expectancy of x number of years they have said from the start if all goes to plan you will have treatment with tablets for 6 months , then you will have a stem cell transplant after a year you will be on no tablets and you will be in remission for 3-5 years but we know someone on Arran who is in thier 11th year of remission. So far all is going to plan !!
Its been good to read what other people have gone through and know I am not alone.
Margo
FormerMember
Yes, we have had the collection AND the first transplant, they do two (Tandem) where we are getting treatment. I can't help you with the hospital stay part as where we go they do the entire process on an Outpatient basis. Probably only two facilities in the world that do that and have been doing it over 16 years with great success. So we had a small furnished apt we rented over 7 weeks and drove in, 1 or 2 times daily depending on which of the procedures we were doing. For the collection it was 2x a day because of the growth factor shots needing to be 2x daily. For the transplant it was 1 a day. Each process was 3 weeks in duration.
I believe Clare, Minniemouse and Adin (in our group) would be able to provide you with more information on hospital stay part. If the process for us was 3 weeks and they don't do it as an outpatient, it would stand to reason you can expect at least that.
The chemo is chemo, its not pleasant and everyone reacts differently really. It depends on so many things. Your attitude about it, tolerance for discomfort, which chemo drugs you're getting and in what dose, etc. There was one guy who would jog everyday for a mile during his entire procedure. Another guy who walked the 7 flights of stairs up to the transplant center every day. These guys were heros of course, but I will tell you that they were not at all the norm. Most felt tired and some really struggled. I guess the bottom line Margo is, it will be whatever it is for you and pray for good attentive nurses who care about your discomfort and work hard to make it better for you. Put yourself in the right frame of mind to accept the onslaught and have it do exactly as it is intended, kill the myeloma cells. Do what you can to increase the strength of your immune system before and after with any changes or improvements in lifestyle you may need to make. You want to do what you can to help your body overcome the disease and compliment the medical intervention to achieve that goal and then keep it at bay.
The biggest thing for my husband was the fear of the unknown. He was really scared and he didn't want to be there and didn't want to be sick and so on. Right away we had some trouble with the port they put under his skin for use over the next 6 months. I sat him down the next morning and enlightened him on the fact that if he continued to protest being there too much we would most likely continue to have weird, unpleasant crap happen. I know, some people think I'm crazy, but I do think you can be at cause over the kinds of things that come your way. Anyway, he agreed that he was protesting and he agreed it wasn't helpful and he agreed to do his best to get with the program, so to speak. After that, we had no weird things happen. He didn't really talk to people or even look at anyone for a long time. People would come up and tell him how much better he looked than a few days ago and he would say to me (who was that?). Eventually as he "survived" and realized he would recover as he felt better daily, he began to open up and reach out to other patients and forge some friendships.
So Margo, understand your fears and worries and do your best to be analytical about them while forging ahead into territory that has been traveled before by 10's of thousands of others before you. Stem Cell Transplants have been going on for more than a decade and the morbidity rate is less than 1% in most places. Realize you may feel like total crap or you may just feel tired, or anything in between. Go with the flow, do your best, don't beat yourself up and don't try to be a hero. Just get yourself out the other side and do your best to notice the success in your recovery no matter how small.
A good advocate for you, to be involved, and know what the side effects potentially can be and when to voice concerns to a nurse or doctor or not, might be helpful. There were moments where my husband was not completely coherent and he would not have given good observations to the nurses or doctors about his condition. It was much easier for me to say, he is too nauseous to take his medicine for 2 days now. If they had asked him he would have said he thought he took his pills. For him time was all squished together. So having someone looking out for you to communicate with the staff any concerns they are having would be helpful.
