Hi all. sorry havent posted for a while. Has anyone gone through the process of harvesting their own bone marrow to go into the freezer for a rainy day emergency. I'm just about to go down this route and have to make my mind up how it will be done. Either straight from the hip or from peripheral blood. both have down sides and neither are 100% sucesfull in harvesting enough marrow. Harvest from the hip has a bit better odds and I think thats the way I,ll go. Any advise please.
Apryl
Hi Apryl
I had my cells collected by leucapheresis [peripheral blood] when I was dx back in Feb 99 and these cells were frozen and used successfully on me in March 2005. The peripheral blood collection was very easy with no pain at all and pretty instant recovery. I would have thought that the collection of bone marrow through the hip would require a general anaesthetic and a certain recovery period. It is your choice but I would go for the peripheral blood apheresis, some people have had this procedure repeated over a couple of days to no ill effect. I am sure they will give details of their experiences.
With best wishes
Elizabeth
hi Elizabeth.
pleased yours went ok.
The doc told me that there is only a 40% chance of getting enough with the peripheral blood and that if they dont get enough first time they may take you of Glevec for a while. also that there was a very very small chance of kicking the leakeamia of again with the drugs they use to increase stem cell production. Also bone aches from pressure build up within your bones.
You do have to have a general if taken from the hip and will be eneamic afterwards but no extra drugs and there is a 60-70% chance of getting enough in one go. So still unsure.
Apryl
Hi,
I had my second harvest just after Xmas 2006. They were trying for 226 million cells. They gave me the GCSF injection to use for the 5 days prior to the harvest. My problem is that my veins are not easy to detect so there were problems trying to find them. There was even talk of using my femoral artery. But in the end they manged.
They thought I would need 2 consecutive days to get that amount of cells in one go and turned up the following morning only to be told that they had 240 million cells. Luck me!!
I know I would rather have the harvest via the peripheral blood than have a GA and a aspiration via the hip.
Regards
Steven D
I am wondering which centre is looking after you. At Hammersmith patients who reach CCR are encouraged to have a stem cell harvest by peripheral blood. I have never heard of anyone doing this by GA and bone marrow - anyone out there had a stem cell harvest done this way ? The injections may cause some bone pain which is gone the minute you start the harvest and the pain can be controlled with Nurofen. By the way it is not just the one hit in the hip, my mother had 12 !! when she donated bone marrow for me, afterwards you have the side effects of the GA plus the recovery from basically 12 bone marrow biopsies !
You are a brave woman Apryl !
Good luck with your decision.
Elizabeth
Hi Elizabeth
I am starting to feel a slight lack of confidence in the consultant who will be doing this. Its being done at Cambridge and he said it was the first time they had done it there, dont know why.
I spoke to one of the nurses about an hour ago who spoke to a different consultant, who said that she would not normally offer a bone harvest as an option anyway. My own consultant gave me a leaflet on each to read through so that I could make my mind up over the weekend. He said that the peripheral blood was only 40% sucessfull unless you come off Glevec for a couple of weeks first (dont want to do that) and that it may kick off the leaukeamia again, only very small chance of that though. He said the bone harvest gave a 60 -70% chance of getting enough but there is a small chance of ongoing back pain (dont want that either).
I dont think he got his maths right as I pushed him for how many times they would have to go into the hips and he said 100, he was very reluctant to tell me this so has he made a mistake? I,m totaly confused now as the hospital seem to be giving me conflisting information.
Apryl
Hi Apryl
I have emailed you direct to chat some more about this.
Elizabeth
erees@hotmail.com
I have had 2 harvests the 2nd one I came off glivec for 3 weeks and for the last 5 days gave myself gcsf inj. They thought I'd have to have 2 days on the machine but it was only one day for about 5- 6 hours. If you go down that route take a book and some music. I didn't have too much pain and with the injections and felt a little wobbly afterwards til I'd had some choc to eat!!!!!!
Yvonne
Hi Apryl
I had my harvest done last year. Mine was done by blood not marrow. I came of Glivec for one week and self injected for five days prior to the harvest to stimulate white cell production.
One needle in the right arm, one in the left and blood passed through th aspheresis machine for six hours. Not enough collected on the first day, so back in on the next and all hooked up again. All finished with no problems.
They said it may have taken several more days, but I was lucky.
The only part that made me a bit worried was the fact they may have had to use a chest canular rather than the needles in the arms but I was fine.
The only issues were boredom (I watched TV)and an itchy nose caused by the anti-coagulants they use. My wife kept scratching my nose for me :-)
It is nice to have it in the bank just in case.
Peter H
The Man From Oz
#825 Zero Club
My Wife has had bone marrow harvest done under general anaesthetic on two occasions - didn't get enough the first time.
I queried the method of harvesting with the haematologist, and was told this was what they always did for cml patients in that centre (Univerity hospital of Wales).
This is because of a small theoretical risk of the gcsf injection stimulating the bone marrow. The manufacturer of gcsf do state use with caution in myeloproliferative disorders.
I am aware however, that many cml patients have have their harvest collected from peripheral blood, with no apparent problem. It's certainly a less painful method, and there's no risk asscoiated with general anaesthetic.
Best wishes for whichever you go for.
Paul
Hi Elizabeth,
I have just been diagnosed with CML and my Dr has said they will try to get me into remission in order to harvest cells as you have done for a rainy day.
I noticed that you said yours have been used on you? What event if I may ask led you to having them used and are you going to have the Stem Cell harvest done again in order to put more away for another day?
Kind Regards
Bill
Hi Paul
I think I have made my mind up to have bone marrow taken from the hip like your wife, for various reason which I wont go into now. How was your wife afterwards, did it take long to get over the aneamia.
Apryl
Hello Paul
You may be interested to know that the policy seems to have changed at the University Hospital of Wales. I went to see my consultant yesterday, and now that I am nearly at CCR, asked him whether a harvest was likely to be in the treatment plan for me in the future. His reply was that a bone marrow harvest is not routinely offered to patients in Cardiff currently.
Regards, Janet
Hi Janet,
I'm surprised at that, it's less than a year since Anne had the harvest done - this was at UHW as opposed to LLandough, but I wouldn't have thought ther'd be that much variation.
Incidentally, they waited for Anne to have a negative pcr before harvesting the bone marrow -giving the best potential for replacing bone marrow if needed in the future.
It would be interesting to know if the fact that drug therapy is now considered good enough that bone marrow harvests are not considered of any advantage.
Paul
