CancerCompass message board discussion started by Audrey68 on 1/12/2008 http://www.cancercompass.com/message-board/message/all,19648,0.htm Wed, 08 Oct 2008 00:00:00 GMT Wed, 08 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I had a stem cell transplant on October 2.  On January 10 I had my 100day evaluation which included a bone marrow biopsy.  I won't have the results of that for two weeks.  I am feeling good.  There are days I don't have all my usual energy, but that is improving.  I find myself having days of ups and downs not knowing what is happening.  I feel very comfortable with my care giving team. Audrey68 Sat, 12 Jan 2008 00:00:00 GMT  On 1/12/2008 Audrey68 wrote:I had a stem cell transplant on October 2.  On January 10 I had my 100day evaluation which included a bone marrow biopsy.  I won't have the results of that for two weeks.  I am feeling good.  There are days I don't have all my usual energy, but that is improving.  I find myself having days of ups and downs not knowing what is happening.  I feel very comfortable with my care giving team.Hi AudreyI am scheduled to have a stem cell transplant (autogenic) in a couple of months and would be very interested to hear of your experience of the process.  Any other readers experiences would also be welcomed.RegardsCameron  Cammie Sun, 13 Jan 2008 00:00:00 GMT  On 1/12/2008 Audrey68 wrote:I had a stem cell transplant on October 2.  On January 10 I had my 100day evaluation which included a bone marrow biopsy.  I won't have the results of that for two weeks.  I am feeling good.  There are days I don't have all my usual energy, but that is improving.  I find myself having days of ups and downs not knowing what is happening.  I feel very comfortable with my care giving team.Hello Audrey;I too am scheduled for an ASCT in early Feb. and am curious of the procedure.Do you recall your numbers prior to the transplant? I am specifically interested in your M-spike and IGG's prior to and post transplant if you can recall them.Thanks;Kevin K. C. Mon, 14 Jan 2008 00:00:00 GMT Oh man here we go.... My brothers IgG level went from 9400 to 2300 in one month and myeloma count from 90% to 23%  (velcade dex and thalidimide ) worked. I have to be prepared to donate 1 to 2 quarts of marrow and will take specific drugs to boost the t cell count. The doctors have informed us that they want to do the transplant with his  own (allo) and mine (matching brother) at the same time. My question is what is the chance if a host verses graft kick back. and is it unusual for this type of transplant and what are the chances of my good chromosomes re-wrighting his bad ones?? zazu1234 Fri, 18 Jan 2008 00:00:00 GMT  On 1/18/2008 zazu1234 wrote:Oh man here we go.... My brothers IgG level went from 9400 to 2300 in one month and myeloma count from 90% to 23%  (velcade dex and thalidimide ) worked. I have to be prepared to donate 1 to 2 quarts of marrow and will take specific drugs to boost the t cell count. The doctors have informed us that they want to do the transplant with his  own (allo) and mine (matching brother) at the same time. My question is what is the chance of a host verses graft kick back. and is it unusual for this type of transplant and what are the chances of my good chromosomes re-wrighting his bad ones??Good Evening Ron;FANTASTIC news about your brother! As a matter of fact, his IGG's are just slightly out of the normal range of 700-1600. How low has his M-spike dropped?I have not heard of a co-donor transplant. But they are trying new techniques to combat this horrific disease. I believe the Graft Vs. Host runs 20-40% for matching HLA.Nonetheless, this should make both of you very happy and positive going into the transplant. Again, I'm glad for both of you regarding this great information!Take care;Kevin K. C. Sun, 20 Jan 2008 00:00:00 GMT I had a auto stem cell in August. I am feeling great considering the way I felt before. By day 100 I was feeling good and back to a semi normal life. Energy is coming back I still get tired once in a while but I just take those days and try to get some extra rest. Your body will tell you when you need to slow down.  I go the end of the month for my 180 day check up. As of now my numbers are down I feel great and keeping my fingers crossed.The transplant was not as bad as I expected. I spend 3 weeks in the hospital. I had about one bad week the rest of the time was just resting, really the end of the stay was the hardest because I just wanted to go home. Take things to keep yourself busy. Laptop, puzzles etc. I hope this helps you. I will be keep you in my thoughts, best of luck.Brenda Lynn0959 Tue, 22 Jan 2008 00:00:00 GMT  On 1/22/2008 Lynn0959 wrote:The transplant was not as bad as I expected. I spend 3 weeks in the hospital. I had about one bad week the rest of the time was just resting, really the end of the stay was the hardest because I just wanted to go home. Take things to keep yourself busy. Laptop, puzzles etc. I hope this helps you. I will be keep you in my thoughts, best of luck.BrendaGood Evening Brenda;"Take things to keep yourself busy. Laptop, puzzles etc." I was told that I could not take my laptop into the hospital because it would disrupt the medical equipment. At first I thought this was ridiculous as the nursing staff sits in front of computers. Did you have anyone prohibit you from using your laptop while in your room? Take care;Kevin K. C. Tue, 22 Jan 2008 00:00:00 GMT Hi Kevin! As you know I didn't have a transplant, but when I was last in hospital I did have my laptop brought in and there was no problem for anyone!  I know, I'm in Australia and things could be different here! -- but the problem that I had was that the laptop was not 'on-line' while I was in the hospital.  I could use it as a typewriter, play games, etc, but couldn't access the internet which was very frustrating. I don't really understand how this laptop is set up, but somehow its attached to our phone line and has a magic stick that 'reads' a gismo on the desk in another room -- too high tech for me!!   If you do take yours in -- and you work out how to access the internet while in there -- I would be very interested!!  Basically I wrote letters and did a BIG mail out once I got home!!  It was theraputic and if it were to happen again I might consider it a golden opportunity to start my personal biography which everyone is asking me to do, but I would really prefer to be able to 'talk' with all of you!!  Best wishes on the upcoming hospitalisation -- stay fit and be as well as possible so that you give this opportunity your BEST shot!!  Take good care mate!  Cath poppy/cath Fri, 25 Jan 2008 00:00:00 GMT My guess would be that each institution would have a different policy based on how they are wired for Internet access. While in isolation during the SCT, they provided me with a cable to their Internet site. Further, while in the infusion labs, etc they had WiFi available.I was encouraged to keep busy during that period and was able to do a lot of advance planning work as well as e-mail communications. Over-all it worked well, just had to shut down and take a few naps during the recovery period. Later reviewing some of the work I had completed, I did find that in some instances, the chemo must have gotten to me.     Stay Positive Sun, 27 Jan 2008 00:00:00 GMT KevinI had no problems using my cell phone or laptop,  the hospital even set me up to use their internet server.  I am not sure what hospital you are using I went to the University of Pennsylvania, they were great there. They tried to make it as comfortable as they could considering you are there for the long haul. Maybe try calling your hospital, my home nurse had a former transplant patient call me. That was a lot of help as she knew all the ins and outs of the hospital I would be at.Best of luck and I hope I could be of some help. Also, take sour jolly ranchers to suck on during the transplant. This will help with the nasty taste you will have during the process.Brenda Lynn0959 Fri, 01 Feb 2008 00:00:00 GMT Hi Ron!  Somehow I missed this message on the board telling us of your brother's current situation.  I had often wondered over the past month or so, what had happened to you both after those really worried messages in the early diagnosis stage.  Its so good to hear that he is doing so well and that you are going to be able to help with a transplant for him  -- Well Done!!  Congratulations to you both!!  Cath poppy/cath Wed, 06 Feb 2008 00:00:00 GMT KevinYes, it sure is a small world. The care at HUOP is excellent. The nursing staff is wonderful, very attentive and really try to make you as comfortable as possible. Is your doctor Edward Stadmauer? You should have a private room with a small refrigerator/freezer. I took some frozen meals, snacks and juices as the food there is beyond horrible. I asked them not to even bring a tray into room as the smell would make me sick. When your stomach is upset it helps having some of your own comfort foods. I really couldn't eat for about a week after the chemo but the nurses kept me stocked with insure drinks.Mouth sores, I really didn't have much problems with. They will give you a mouthwash to rinse with when you check in. I used it every time I went into the bathroom and had no problems with mouth sore at all. Yes I had a central line which I came home with because my veins are shot from all the picking they have done over the years. I had breast cancer in 2000 so the can only pick on my right arm. Keeping the line made it easy for all the blood work. Unfortunately, I developed a double septic shock with the line and had to have it removed 2 weeks after I can home from the transplant.I think the worse of the transplant is when they are giving your cells back you may have rigger. I was so cold and my body went into fits of shaking. It is very uncomfortable, no matter how many blankets they use you just can't get warm. My body shook so bad I was sore for 2 days afterwards. The best advice I can give you is that try to remember it won't last that long. Mine lasted for about 30-40 mins. My M spike was 12.8 at the time of the transplant (August 1st) and my IGG Kappa was 4.3 In mid Sept my M was 9.9 and IGG Kappa was 3.5. The doctors tell me slow steady decrease in these numbers are the best.I see no reason why you shouldn't take a doll house or something of interest to work on. The last 10 days of your stay will be basically resting time. You could have something to do in between naps. I also took a lot of movies to watch on the computer anything to make time pass. I hope this helps. Good luck and please let me know how things are going.Take careBrenda Lynn0959 Thu, 07 Feb 2008 00:00:00 GMT Kevin,You may have already been in the hospital but when I was in for my BMT I used the hospitals Wi-Fi in my room every day. At least on my transplant floor there was no problem.   Chapbin Tue, 17 Jun 2008 00:00:00 GMT