It's probably worth me providing a brief update: Today is day 12 since I was admitted and I should now be in the "low point". Yes my neutrophils and platelets have gone right down but I'm coping quite well. I got a brief temperature "spike" which prompted the medical team to give me anti-biotics and now my platelet count at 5 will result in me receiving a transfusion today. All in all though I'm OK. My mouth has some mucositis but is not in anyway sore (maybe I should write a separate discussion about my thoughts on that?). I have had some bowel problems but that is now under control.
I keep my fingers crossed because, so far, I've had any easy run. Long may it continue and may others be similarly blessed.
Keep well
Stephen
Thank you so much to everyone for your kind words and (importantly) for the humour. It is most encouraging to know that others have had similar experiences to mine and that I can communicate with you as needed.
I encourage anyone embarking on such treatment to similarly use the forum.
Thanks everyone and keep well
Stephen
Thanks for everyone's kind words. I you wish to follow my progress I have started another discussion "Bristol SCT"
Keep well
Stephen
Liz
Many thanks for your post. One of the benefits of the forum is the realisation that we are not alone with this disease. I've sent you a personal message with my email address. You are most welcome to contact me direct if you wish. I note Vicki's post above and wonder whether you might consider posting details of your experiences.
I attended pre-treatment clinic yesterday and will be admitted on Monday (2nd July). My greatest concern at the moment is my paraprotein level which has risen to 28. I started at 56 and got down to 16. I therefore wonder about the quality and length of remission I might expect.
Lastly, do tell us how you are doing having now completed HDT&SCT some time ago.
Very best wishes
Keep well
Stephen
Hello Vicki and Colin
Reading both this post and the discussion you?ve also started, you are going through something of a roller coaster and clearly feeling anxious. I won?t repeat the very good advice you?ve received from your discussion. The key, certainly for me, is the gathering and interpretation of information. I quickly found that I also needed to get it from trusted sources. The Myeloma UK pamphlet on HDT&SCT is well written and so far accurate; according to my experiences. The very best source of information is typically the nurse specialist. From my experience they know their subject and can normally spend some time with you ? do lean on yours. GPs normally don?t understand myeloma. Consultants obviously do but often can?t afford sufficient time. I?m fortunate, my consultant discussed my options at length and also described the transplant process in detail. The other source, of course is the Myeloma UK help line. I?ve not used it but its reputation is excellent. The forum is very good but writers can only reply, like I do, based on their own experiences (often very valuable though). I based my description of stem cell harvesting on a discussion written by Perkymite entitled Musings from Ward 9. You will find this on page 3 of the Treatment part of this forum ? it?s probably just what you need to understand the subject.
I will, for now concentrate on the practicalities of stem cell collection. You will find the staff at the Bristol Specialist Therapeutics Services unit very welcoming, caring and extremely professional. Rest assured that Colin will be in very good hands. They will do their utmost to get a successful outcome. I?m not sure how you will travel to Southmead but if by car I would recommend leaving the M5 at junction 17 and then making your way to the unit. You will receive documentation from them giving their postcode as BS10 5LX. If you Google Map that you will see that it would take you to housing just outside the hospital grounds! You need the gated entrance off Southmead Road (B4056). The unit is housed in the same building as the Donor Centre which is immediately ahead of you as you pass through the gates. You may park in one of the donor spaces! On entering the building reception is immediately in front of you with the donor area to your left. The Apheresis unit is to your right. Reception will probably ask you to sit down and possibly offer a coffee. The CD34+ blood test takes about an hour to get a result. All being well Colin will then be connected up.
The unit has television and radio (with headphones) but Colin may want to take reading matter etc. Vicky, you may want to go to the Mall at Cribbs Causeway for lunch and a little retail therapy!
Before you go, do consider how Colin would get his next GCSF injection(s) if a return visit to the unit is required. The timing of administration is important.
Finally, if I can be of further help, if you prefer please feel free to contact me direct. Thank you for your thoughts about my treatment which I now just want to get on with.
The very best of wishes and keep well
Stephen
Hello Dai
Many thanks for your post. I was sorry to learn that you had something of a struggle to harvest your stem cells.
I was phoned earlier today and have been scheduled for admission for HDT&SCT starting Monday 2nd July. I can?t beat your world record ? it seems that I have only 13 bags which will be infused on two consecutive days (seemingly to avoid problems with the preservative).
I wish you the very best on Revlimid.
Stephen
Dear Mari
Thank you for your most encouraging post. It is perhaps a shame that Stephen relapsed as soon as he did but he and you will be relieved that he has responded to the Velcade. Please do keep in contact; I would be most interested to hear how the next mobilisation and collection goes.
The very best of wishes to you both.
Stephen
When I wrote my post dated 14th June, I thought that my yield of 2.16 was the number of doses. I?m keen to ensure that I don?t misinform anyone. Yesterday I saw my consultant at Bristol who clarified the matter. My collection yielded 2.16 million stems cells per kilogram of my body weight. Since 2 million are required for one course of treatment, the yield does not offer the opportunity of a further course. This creates something of a dilemma for me which my consultant was happy to discuss at length. Firstly it is unlikely that a further immediate attempt to harvest more stem cells will be successful ? it required 3 days with diminishing results. Secondly, when I ultimately come out of remission, it may prove difficult for me to again provide stem cells and funding for Mozobil (Plerixafor) is currently difficult obtain. Given the limited options I have agreed to proceed with HDT&SCT. I anticipate being admitted within the next 2 weeks.
Keep well
Stephen
Hello Eve
Many thanks for your comments. Looking back on your posts, you?ve obviously had mixed experiences; very different to my own. I find myself so often saying how fortunate I am ? especially when compare to other patients I read about and meet in clinic. I am especially fortunate to have encountered excellent support ever since I was diagnosed.
I trust that Slim is keeping well
Very best wishes
Stephen
Many thanks for your response Scott. Looking at your past posts, you've certainly been through the mill.
It was because I was in the Myeloma XI trial that I was first randomised onto Revlimid. At first it worked OK but the 4th cycle indicated lack of response. The trial then randomised me onto Velcade but my paraprotein did not go down, rather it actually increased. Because my overall response has been greater than 50% reduction in PP, I am now able to move on towards HDT&SCT. It remains to be seen how well I respond to that.
I note that you are now on maintenance with Revlimid. I trust this not giving you too much in the way of side effects. (Subject to the trial, I may also find myself on Revlimid for maintenance).
Best wishes
Stephen
In my second post dated 30th April, I promised to provide an update. It took until my appointment on Tuesday to get my paraprotein result for the start of consolidation cycle 2. When I saw my consultant Dr Jenny Bird, the result was not on my notes and she had to contact the lab in order to make a valid decision. The news was not as hoped. My 4th cycle of Revlimid had been ineffective. The news was that my first cycle with Velcade showed an increase of paraprotein to 22. My MM is proving to be stubborn. It was also apparent that my platelet count is getting very low at 35. So yet another decision was required. I have been taken off chemo and will be scheduled now for SCT. I?m glad to be moving on but wonder what my current situation really means in the longer term.
On a more positive note, after my consultant?s appointment, my wife and I traveled up to stay two nights in Kew in order that I could carry out research at the National Archives. It was an enjoyable and rewarding trip. I feel well and am conscious of the support of the forum readers. Thanks to you all.
Best wishes
Stephen
Thanks to far to Tom, Eve, Andy and Debs. Since I was diagnosed I?ve discovered so many positive things. The value of Myeloma UK especially in terms of the information it provides and the friendliness and support of its Forum. This has been my first post and the speed of reply has been remarkable and most supportive. Tom responded in minutes and Eve in the early hours of the morning! I take on board the guidance from Eve, Andy and Debs about myeloma being such an individual illness. Debs? experiences seem very similar to mine except that, so far, I have not suffered from peripheral neuropathy.
My questions mostly reflect my frustration at being unable to influence my progress. I have spent much of my working life in controlling roles: now I have simply to be a patient and to be patient. I admit to have become preoccupied on my paraprotein levels and the journey towards SCT. It will probably be another week before I find out whether I am responding to Velcade.
I wouldn?t want anyone reading this to feel I?m down-hearted. Compared to so many other cancer patients that I meet, I?m very fortunate. I have the resources of the Bristol Haematology and Oncology Unit at my disposal. It is a surprisingly welcoming environment with a professional, committed and caring team. I?ve learnt to live around my treatment and I have few side effects.
Once I get my PP results, I will endeavour to provide a further update.
Until then, as Winston Churchill used to say, ?KBO?. Thanks everyone.
