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Eva 11 years, 11 months ago.
Hi – this is Eva. Sue has asked me to write a note about how she is and to ask a question.
Sue's had her autologous transplant 26 days ago. She's still in hospital: her doctors don't seem to know whether her stem cells have engrafted. She's
had nausea and mucositis. Recently she's been having blood transfusions as well as infusions of platelets and injections of growth factor. Her neutrophils are a bit over one. Yesterday she had fifteen platelets; today this dropped to seven. Her platelets rise temporarily when she's given a bag of them.
Sue was given Melphalan and then she received her stem cells just the day after. I suppose there is a nagging fear that maybe the Melphalan was still in her system when the stem cells arrived, that perhaps this might have contributed to her apparently slow engraftment. Have any of you had your stem cells re-infused just a day after the Melphalan? Does anyone have any thoughts on this matter?
Sue is hoping to go home this weekend, just for a couple of days, but she will have to return on Monday to check whether she's any closer to engraftment.
Best,
Eva
Hi Eva and Sue
As you know slim is in the middle of his SCT.
He went in on a Sunday, only 50% of chemo given on Monday,the next day was a rest day,them harvest fed back.he is not recovering very quickly a bit at a time,he has had his own platelets plus some more plus injections of growth factor.His platelets stood at 7.5 last time I asked.
My concern has been the constant wretching and lack of wanting to eat and drink,I was concerned it was Slims Kidneys,but the boss man tells me no.Said he should improve Saturday or Sunday,now they say Monday.
I asked a number of times why they fed harvest back when chemo was still doing its job of killing cells,one reply was good question,never asked that nurse again,another reply was they did not want the body to get too much damage quick in and out chemo flushed through as quickly as possible said this would do the job,each individual has there own package and this was Slims.!!!!!
14 days now and i am getting concerned that the progress is only slightly improving and some days he gets knock backs,holding out for NO tube but very little water or food being taken.
Hope this is some help.Love Eve
Hi Eva & Sue & Eve,
Recalling a conversation with one of the registrars regarding the SCT processes and the Mephalan/Cell returns in particular… I was told that the Mephalan is 'scoured' as soon as the medics think it has done its job… that is, by the time the cells are returned the Mephalan has done its job and has been thoroughly washed out of the system.
As I recall I had the Mephalan followed almost immediately by the wash… the next day I received my first bag of cells back… the first of 14 bags (2.1million in total). I felt nauseous but the medication worked. They didn't seem concerned about my food intake but they kept a close eye on my fluids intake and although I thought I was doing well they didn't agree and I was on a saline drip from the moment they finished my cells return.
From all my time on the forum and all the SCT blogs and diaries etc., this process really does prove to be a case of individuality… some sail through the process with hardly a murmur, others seem to have every known pitfall…
I hope that Sue's engraftment improves quickly.. her Neutrofils at just over one shows that the transplant has worked but she needs the support network (platelets etc) to do their job.
As for Slim… we know how tough he can be and he has to do just that.. tough it out, keep drinking for England and get through the 'no man's land' between cell return and the magic 0.1 show in his Neutrofils.
Dai.
Hi Dai
you can lead a horse to water but you cannot make it drink!!!!you name it I have tried it,he understands how important it is,the least mention of a drink,and I am badgering the kitchen or off to the shop.he said he feels like knocking back a pint,but cannot do it,small cold sips is his limit.
All the thing he is lacking are on drips,plus a driver for pain,as they forgot to give him his tablets once and the result was doctor called,my daughter was there and worked out what was wrong.
The general impression I get is every thing is fine,a little improvement day by day,Slim cannot afford to loose a lot of weight,he was drawn before he went in,i just thought it was the pressure of the last couple of weeks,when they put him on fluids his body took better shape,plumped the flesh up a bit.But he is still refusing a stomach line!!.
I am pinning all my hopes on him improving on Monday,so he will be able to eat.the drugs for sickness never seem to arrive 30 min before food so food goes cold or he eats and is sick.
Any way I am off now to drive to London as SE net work have so many cancelled trains it takes ages,it,s funny all these people who get sick and cannot go to work when it,s sunny. lol Love Eve
Dear Eva and Sue,
It may help but I remember a conversation with Steve's consultant during his SCT. The bone marrow is knocked out by the melphalan but can regenerate iself without a transplant, but slowly. They give the harvested cells back to improve this regeneration in the process of grafting. I think that for some people the process can just be slower than others.
Dear Eve,
I am sorry to hear that Slim is having such a tough time. I rmember it with Steve, I would come in and find plates of cold food untouched. Sometimes he was too weak to even open his eyes when we visited. I used to take titbits to try and tempt him and often had to feed him to get him to take something. I am sure you have been through all of this and I am not telling you anything you have not already tried, but here are a few suggestions, yoghurt, difficult to find but you can get the non bio ones, fruit jellies, cool and slips down easy, tinned fruit, ice cream, cheese or cheese spread and crackers, or tiny pieces of toast with cheese spread or marmite ( love it or hate it!) or even good old lucozade. It's almost like feeding a sick or difficult toddler. I am sure you know what he enjoys but his taste will be changed by the chemo, Steve often wanted chocolate to take the taste in his mouth away but he usually never touches it. I dont know if you can find Gill's account of Stephen's SCT but she had lots of good ideas about encouraging him to eat.
I remember that Sunday journey so well, a nightmare at times, I wish you both well and hope Slim turns a corner soon,
Much love Mari xx
Hi Eva and Sue
Just for info I had my transplant the day after my Melphalan.
I was told to eat as much as i could before and after the SCT as I would not want to eat after it. I also suffered a lot from the wretching wanting to be sick but wasn't sick but the anti sickness pills help a great deal. I also could not drink enough water so asked to be put on the drip to help with my intake.
Send Sue my Love and great big Hugs sent also
Love Tom "Onwards and Upwards" xxxx
Hi Eva and all,
I thought this article might be of relevance and interest.:-)
Dai.
[b]The Myeloma Beacon
May 29, 2012 10:12 am
Forum Highlight – Beacon readers have been discussing the hypothesis that cancer stem cells are the cause of multiple myeloma persistence and relapse. [/b]
[i][b]Day Of Rest Between Melphalan And Stem Cell Infusion
May Not Be Necessary For Myeloma Patie[/i]nts[/b]
[b]~By Virginia Li[/b]
Multiple myeloma patients receiving an infusion of their own stem cells either one day or two days after undergoing treatment with high-dose melphalan demonstrate similar clinical outcomes, according to a recent U.S. study.
The study investigators conclude that a day of rest between treatment with melphalan and stem cell infusion appears not to be necessary. Based on their findings, they recommend that melphalan administration the day before stem cell infusion should be considered as standard of care.
According to Dr. Giampaolo Talamo of the Penn State Hershey Cancer Institute in Hershey, Pennsylvania, and lead investigator of the study, the two most important benefits of giving melphalan as a single dose on the day prior to transplantation are decreased costs and simplification of the treatment process.
?It simplifies the process for patients, doctors, and nurses. Less material like intravenous lines and bags, and less time and supervision spent for the administration of chemotherapy,? said Dr. Talamo. ?Besides cutting the cost of material and personnel, it cuts the cost of the transplant because it requires a day less in the hospital.?
An autologous stem cell transplant is a procedure in which stem cells are harvested from a patient prior to high-dose chemotherapy and later re-infused into the patient?s body to replace the cells that were destroyed by chemotherapy. This procedure is a standard course of treatment for multiple myeloma patients aged 65 years and under.
Melphalan (Alkeran) is the chemotherapeutic agent generally used with stem cell transplants for myeloma patients. According to the study investigators, many treatment centers typically wait at least 24 hours between melphalan administration and stem cell infusion, believing a ?day of rest? in between may be necessary to avoid any possible negative effects of chemotherapy on the re-infused stem cells.
The study investigators point out, however, that the ?schedules of administration are based more often on empiric policies than scientific rationale or data.?
This lack of data led researchers from the Penn State Hershey Cancer Institute and the University of Utah to evaluate whether the timing between treatment with melphalan and an autologous stem cell transplant would have an impact on clinical outcomes.
The study investigators retrospectively analyzed data from 138 myeloma patients treated at the Penn State Hershey Cancer Institute who received high-dose melphalan followed by an autologous stem cell transplant between 2007 and 2010. The median age of the patients was 59 years.
From 2007 to 2008, patients received high-dose melphalan two days prior to stem cell infusion. The policy was then changed, and patients began to receive stem cell infusions the day after receiving melphalan, sometimes as little as eight hours later.
Thirty-four percent of patients were treated with melphalan two days prior to transplantation, while 66 percent received melphalan one day before the transplant. The median dose of melphalan administered (190 mg/m2 two days prior to transplant or 182 mg/m2 one day prior to transplant) and the median number of stem cells infused (4.7 million cells/kg two days after melphalan or 5.1 million cells/kg one day after melphalan) were similar for both groups. Likewise, time until stem cell engraftment and recovery of blood cell counts were similar for the two groups.
Responses were evaluated six to eight weeks following transplantation. The overall response rates for patients who received melphalan two days prior to transplantation and one day prior to transplantation were similar (96 percent versus 95 percent, respectively).
The one-year progression-free survival rates (90 percent versus 87 percent) and one-year overall survival rates (96 percent versus 99 percent) were also similar.
For more information, please see the study in the European Journal of Haematology (abstract).
Dear Dai,
Thank you, that's exactly what we were looking for! I've put a bit of muscle into researching this issue on the Net, and haven't found anything half as appropriate. I haven't spoken to Sue for a couple of days so I don't know how she is, but I believe that she might have be taken to and fro from the hospital and home, and that would be exhausting….
A quick update on me… I had a serious relapse a bit over 2 years after a transplant. We tried Thal and Dex for eight months. My myeloma has evolved into( almost) a non-secretory one. I responded slowly but surely, eventually appearing to reach a CR or something close to it. I had a lot of trouble with dex withdrawal symptoms each cycle and even had serious myopathy at one stage. I was taken off dex and have continued on Thal for another four months. It appears I'm still ok. I'm possibly eligible for another transplant so the issue discussed in the article may be relevant to me too. I'm waiting to see what happens and don't feel like galloping towards another transplant. I'm aware of the tension you must be experiencing and I hope that the Revlimid is good for you.
Best and thanks again,
Eva
Hi Eva
How is Sue getting on,although Slim is home we have spent 2 days going back and fourth to are local hospital,Slim has a problem with his platelets on Sunday they were 33 today down to 7,there is fine explanation under the Macmillan Site.Explaining some of the reasons why this does happen .
One explanation is having platelets from another source,some times the body does not accept them,then they have to do a cross match if this carries on.
having low platelets is a very small danger of bleeding,so that is the main worry,it does not effect the neutrophils.
Slims present reading is neut is 1.4 but plat are 7
As Slims body has not shown the classic results in general,I feel its just another thing to take on bored and keep a very careful watch on his condition.
I do not consider the when the harvest was given back to be the cause its just,again the patient react different to different treatments and as Slims has never been plain sailing,its just another learning curve.Eve
Hi Eve,
I spoke to Sue yesterday. She'd phoned my place the day before when I was out and told my husband that her platelets had increased by four all on their own! We were delighted with that and saw it as evidence of engraftment gathering pace.
Sue is at home and still feeling very exhausted and experiencing some nausea. I think she's very relieved about the platelets.
Wishing Slim the best and hoping he recovers from all the side-effects of the transplant. Please keep us posted.
Eva
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