[AV8RParticipant]

Some time ago I stumbled across a post written by David Marriott, aka ?perkymite?, entitled ?Musings from Ward 9?. This is an excellent description of the process of HDT&SCT written from the point of view of a patient. For my two pennyworth, I have recorded the following experiences of Mobilisation and Collection.

28th May 2012 – I attended clinic at the Bristol Haematology and Oncology Centre (BHOC) and, having had my general health checked, was signed up for HDT&SCT. I was also asked to sign a series of consents. I then went to the apheresis unit at Southmead Hospital to get my veins checked. It was my role as a platelet donor which resulted in me being diagnosed with myeloma. It was a pleasure to see some of the same donor carers and also to be told that my veins were suitable for stem cell harvest.

30th May ? The guides on the subject just hint of the use of high dose chemotherapy (Cyclopriming) to kick start mobilisation prior to administration of growth factor. I was to be admitted for an ?overnight stay? at the BHOC subject to bed availability. As required, I phoned the ward at 9am and was asked to arrive at 1pm having eaten lunch. Quite what treatment I was to receive and when seemed somewhat unsure but to be fair the ward was very busy. There were suggestions that treatment would start at ?6 o?clock? but not which one. 6pm came and went as did 7pm. Once the night shift was in at 8pm, I requested an update. My ?overnight stay? would be 2 nights and the ward did not like to infuse chemotherapy at night in case of complications. Instead I would first be infused to ensure adequate hydration starting at 2am, and with Cyclophosphamide being infused once the day shift had come on duty.

31st May ? As scheduled my first infusion started at 2am. There is something less than comical about listening to a very noisy infusion pump when you?re trying to rest! After breakfast two bags were plumbed into my cannular. The first contained 3160mg of cyclophosphamide, the second 5300mg of Mesna. I had not heard of the latter medication which transpired to be to protect my bladder and kidneys. After the two infusions, I received a further one just of Mesna. I was also introduced to the joyous experience of collecting all my urine. The collections were required to check for blood in urine which would indicate problems. Any sense of dignity was gone but the process indicated the huge effort my carers were making to look after me. I was discharged on the 1st June.

4th June ? This marked the first of several daily injections of Granocyte (aka Lenograstim) being the G-CSF or growth factor. I elected to self-inject since I had previously self-injected Clexane. I could thus avoid daily visits to the clinic and could actually contribute something to my treatment. This appointment was needed to collect the various materials and to be shown how to make up the injections. The nurse brought me a very full carrier bag to which she then added such materials as alcohol wipes. I was taught how to assemble 4 vials (containing the Granocyte in dry form), 2 syringes (containing sterile water), 2 large needles (for mixing), 2 thin needles (for injecting), and a wipe. I then learnt how to prepare the two syringes such that they each contained the dissolved contents of 2 vials. The nurse then watched me self inject. The process is easier to do than to describe but does require certain techniques to ensure hygiene. The kit even came with a DVD to further demonstrate the finer points ? most impressive.

I was now to administer G-CSF until collection on Monday 11th June. I was aware that some patients experience some pain due to mobilisation and I had even hoped for it. Be cautious what you hope for! About three hours after Thursday?s injection I started to get pain; initially in my pelvis, later in my breast bone and then in my legs. The pain was sufficient that I couldn?t sit or lie down. Having been advised to avoid any pain killers other than paracetamol, I was alarmed to discover that even this had little effect. On Friday I was prescribed codeine (which fortunately worked) and morphine (which I thus did not need).

11th June ? I went to the Specialist Therapeutic Services unit at Southmead hospital in Bristol for stem cell collection. The unit is housed in the same building as the Donor Centre where I had given platelets until April last year. I was warmly met by the staff who I know so well. The first task was to provide a blood sample for a test called CD34+. This would confirm whether there were sufficient stem cells to justify their collection. A count of 10 was required and my result was encouragingly 24. Accordingly I was connected with a needle in my left arm and a cannular in my right arm to the apheresis machine. The cannular allowed free movement of my right arm throughout the 5 hour process. Patients are encouraged to drink fluids and the machine also infuses a sizeable amount of saline. I thus discovered another benefit of a mobile right arm and my dignity was dented a little more. I learnt that men are more fortunate than ladies but ?needs must?. Once I was disconnected, the collected cells and some plasma were sent to the laboratory at Filton to be processed and for the quantity to be assessed. I was phoned with the disappointing news that only 0.45 of a dose had been collected. I was thus to return on Tuesday. Not a good start.

12th June ? My CD34+ had predictably fallen to 17 but the day yielded a more satisfactory 1.32 doses.

13th June ? My CD34+ was now worryingly low at 9 and the staff were not confident of the outcome. In the event I yielded 0.39 doses. I left Southmead very tired from 3 days of being connected, with a very sore left arm muscle, and with a very warm feeling from the wonderful care and friendship I had experienced.

My total dose count was thus 2.16 and presumably sufficient to enable HDT&SCT. I see the consultant on Tuesday 19th when the next phase will hopefully be scheduled.

Enjoy your trip to the Scillies, David.

Keep well everyone.

Stephen

[ellenModerator]

Dear Stephen

Thank you for this, it is very useful, very comprehensive and explains the stem cell harvest process very well.

Ellen

[PerkymiteParticipant]

Hi Stephen, I really happy that you found my Musings from ward 9 helpfull. I am "still standing" and feel well.

The very best of luck to you

Kindest regards – Vaasbyte

David
(aka Perkymite – (which is my gaming name in World of Tanks and Age of Empires Online,games I consider brain exercises 😀 )

[eveParticipant]

Well i have to say Stephen,they sounded if they did a good job on you,Slims was very different.

We travelled 86 mile went to chemo out patients were he was given his chemo to help generate BMC out into blood and sent home with a five day course of injections.Travelling 86 mile back. Total 172 mile round trip to Kings London from the south coast.We asked about him staying in,answer no.

After a period of time went back for harvest which took 2 days,ending with 4.02 million
Then we had to go back for test eg Echo sounding,ECG,liver test and a few more which I cannot remember 7 app in one day plus consent forms signed,SLim would have signed it just to get out of there.Then home again .

So one can only assume different hospitals do things different.Eve

[AV8RParticipant]

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

[eveParticipant]

Hi Stephen
Slim had his SCT and came home on the 1st of June,since then its 2 trips to local hospital each week to check on bloods plus any extra trips for platelets,he also spent 3 days in local for fluids,plus blood and platelets,have been back to Kings who are happy with him,and want to see him in 2 months.
My own opinion is this is were the hard work begins,specially for the carer,you need to keep the house very clean,plus spending time cooking meals that are not eaten,its a little and often,Slim likes to go out,and i do not think he is up to driving so it all takes time,
The drugs are a mine field in themselves,I am getting good at doing charts.
Some peoples neutrophils just keep increasing but Slims have been going up and down,once they keep going up everything else like platelets should catch up,I have come to look at it as another learning curve.

I do hope you have a good SCT,and make a quick recovery,everyone is different,if I was you I would eat as much as you can now,because it will be a long time before you enjoy food again.Eve

[AV8RParticipant]

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

[MariParticipant]

Dear Stephen,

thank you for your very interesting and complete description of your harvest procedure. My husband, also Stephen, had his SCT September 2010. Unfortunately he relapsed just before Christmas 2011. He has had 6 cycles of velcade to which he has responded well and we were very surprised to learn that his consultant considered him a good candidate for a second SCT. Like you he also produced just over 2 million stem cells and they all went back in during his SCT. He has been given date in mid July for another harvest and his second SCT will happen late August early Sept. Lie you we thought that it was not easy to harvest a second time, but of course we are happy to go with whatever the doctors say. He is treated at King's College Hospital in London, we live in Kent, and they do a huge number of Stem cell transplants every year. I believe they dont have enough space to store large quantities of Stem cells and so always use the full amount harvested.

Good luck with your transplant, we will all be rooting for you,

Best wishes, Mari

[AV8RParticipant]

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

[DaiCroParticipant]

Hi Stephen,

Like you I only achieved enough stem cells for a single procedure (2.1 million) after 5 days on the harvester, including two visits back to the hospital for 2 seperate midnight doses of Plerixafor. They struggled to get there but we finally made it (although nobody thought to let me know until the following Monday). The struggle to get the magic number was shown by the return procedure where the 2.1million cells were given back in 14 separate.bags (an existing world record or so I am informed) Nottingham's previous record was 8 bags which they had thought unique… a dubious record and I wonder if that had an effect (given the preservatives etcetera) because my 3 to 5 year prognosis turned out to last 10 months).

Velcade got me down to 0 and full remission but only lasted 6 weeks out of treatment… But I am presently on cycle 5 of Revlimid and Dexamethasone… So it seems that I respond well while on active treatment and poorly out of it… So Rev and Dex… A continuing therapy, may be the kind of treatment that works for me.

I wish you well with all your treatments and hope they bring you long remissions. David, (Perkymite) struggled with harvest but has responded well to his SCT and is doing well… So the actual harvest procedure is not necessarily an indicator of resulting remission etc.

Regards:-)

Dai.

[AV8RParticipant]

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

[VickiParticipant]

Hi Stephen,

Wishing you all the very best with your SCT. We too live in the west country (Gloucestershire) and will be visiting south mead soon too, your summaries have been extremely useful. I hope it all goes well for you. If you are well enough to give any further updates that would be great. We have been told today that Colin is going forth for SCT. They checked his bone marrow today ouch! Makes matters worse just got a phone call to say that he has to have done again due to sample being poor ……ouch ouch!,

We are worried about the SCT, what support and information did you get before hand, apart from the book. Looks like col will have a problem too with regard to harvesting, we are told that prelixafor (sorry spelling) the thing that stimulates stem cell growth is not available in the south west so we are keeping our fingers crossed he gets enough.

Any info you can share will be great and best best wishes,

Vicki and Colin x

[AV8RParticipant]

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

[VickiParticipant]

Stephen,

Thank you so much. Colin has read your blog and found it so so helpful. We hope it goes well for you, we will be thinking of you. I am sure there are lots of questions so any info will be greatly received.

Keep in touch 🙂

Vicki and Colin xx

[LizWoodwardParticipant]

Hi Stephen, I am a year ahead of you treatment-wise, also at Bristol, so it you would like any feedback on my SCT at Bristol Oncology,, I would be happy to discuss with you and give any tips I think might be useful. It honestly wasn't as bad as I feared!

Am I allowed to give you my email address for contact?

Regards

Liz

[Author]

Posts