This topic contains 50 replies, has 6 voices, and was last updated by 
ange 8 years, 9 months ago.
Hi Peter, Ian, Dawn and all,
I am now 4 months post SCT doing well and feeling alot stronger. Only problem I have is ongoing carpel tunnel syndrome which is annoying, also quite achey in general but I am trying to improve my fitness level which helps. My paraprotein last time was 11.7 and before that was 10.7 so it seems to be stable. I have put my scarves and wig away and braved my new grey hair, it is very soft and very liberating! My hairdresser said to keep the grey colour, grow it a bit and then have a nice pixie cut. I really don’t want to colour my hair again and so I will give it a go! I am planning to go back to work in October all being well. My husband, son and I will attend the Cardiff info day next Saturday which I am looking forward to.
Peter, have you been given a date for SCT yet? Hope all is progressing well. You asked about aching muscle and joints. I found that this disappeared whilst I was in hospital for my SCT which I was surprised at but I do have it back now. Like you I take painkillers and get on with it!
Ian, hope you are doing ok on Revlimid and Dex and that the acid reflux is under control.
Dawn you seem to be doing really well, that is an excellent response! I know it is scary leading up to and going through SCT but just take one step at a time and you will be fine. If you want to ask any questions etc I will be happy to try and answer them.
Best wishes to all
Andrea xx
Hi Andrea
It’s all about steps and as time goes on you will regain your strength and pull away from feeling weak and tired as for the grey hair I decided to keep it because I wanted to take some control of my wellbeing and decided against adding chemicals to the mix even though you can have it done without touching your scalp nevertheless I decided to flaut the grey by having a really modern take on it which I believe is very fashionable these days amongst the younger folk alike, it does take a bit of getting use to but so does everything else to do with this journey.
Polly
Hi Andrea, Dawn, Ian and Polly,
Delighted to hear your recovery is going so well, Andrea, and that you are managing well on the CTD, Dawn. Sorry to hear about your carpel tunnel syndrome, though, Andrea. One of our daughters is troubled by that and finds it a real nuisance.
I have, at last, got a date for my SCT – 23rd June. The week before last I went up to the Freeman for “pre-transplant investigations”. All the usual things, including a chest x-ray and ECG, as well as taking enough blood for testing to float an ocean liner. Well, maybe that’s a slight exaggeration, but there must have been about 10 phials!
All seemed ok, apart from my PPs creeping up to 11.9, but last Thursday my GP surgery called to say that the hospital wanted me on antibiotics for a UTI they’d discovered from the urine sample! The only thing worrying me about that is that there won’t be much time to retest before I’m due to go in, so I hope this won’t delay things.
They also told me that I won’t be getting the full dose of Melphalan on account of my seventy years. I seem to remember you had a lower dose, too, Ian. It seems they don’t want to wipe me out with the Myeloma! (Seventy years! How on Earth did that happen?)
All this chat about hair is very interesting. They advised me to get mine cut very short before I go in, so my wife’s hairdresser has, kindly, offered to come to the house to shear me the day before! They do say it can grow back very different, so maybe I’ll be blonde and curly instead of grey and straight!
I’ve to trim my beard very short, too, as that is also going to disappear, I’m told. But, it will come back first, I’m also told. Not that this will be of any interest to you Andrea, Dawn and Polly! Dare I keep a photo record of all these changes, I wonder!
Well, I hope you’ve all been enjoying nice weather in your various parts of the country. For a nice change the weather hasn’t been “grim up North” recently, and we’ve been making the most of the sunshine.
Take care, everyone.
Best wishes
Peter
Hi Andrea, Dawn, Ian and Polly,
I’m finding this a difficult post to compose in case it sounds rather “what was all the fuss about”, as I know people often have a really rough time with their SCTs. If it comes across like that I do apologise; it isn’t my intention.
I’m back home again after my SCT and feeling fine. I have to say I think I have been really lucky as I have not had any side effects to speak of at all. So far anyway!
They had me chewing ice before, during and after my Melphalan infusion, which they said is really effective in helping prevent mouth problems. It certainly seemed to work for me. I felt rather queasy during the night after the Melphalan, but that may have been due to the diet of ice. Chewing ice for two hours soon stops being fun!
As always, the main problem in hospital is boredom, and I got very restless if I sat for very long. I didn’t want to lose too much muscle tone if I could help it so I was allowed to walk round the hospital several times a day. The weather was kind and the hospital has very pleasant garden areas, which made my walks more pleasurable. There is also a Maggie’s Centre on site which provided a very welcome change of surroundings. I wonder if any of you have come across one. There are a number around the country, I believe.
I was quite surprised when, on Monday last, one of the doctors came to see me to say that the consultant had been looking for me to say I could go home. Although my blood counts were still quite low, as I was so well, and “sensible”, he considered the risk to be small. Unfortunately, it was quite late in the afternoon and no transport was available, so I got to spend another night in the hospital!
I went back on Thursday for an outpatient appointment when they did another blood test. The white cells and neuts were still low but, as they expected they would be starting to rise again (day 14), they sent me home with some syringes of growth factor to inject myself with which should speed up the process. I’m back under the care of the local team once again, and will have another blood test on Tuesday. Hoping my blood counts are showing a rise by then!
I hope you are all continuing to do well.
Hoping to hear from you; and looking forward to soon having an immune system once again!
Best wishes
Peter
ps haven’t lost my hair yet; but there’s still time!
Hi Peter, Ian, Dawn, Polly and all
Peter, well done! So glad that the SCT has gone smoothly for you. Just take care of yourself now and hopefully you won’t get any complications. Remember to listen to your body and rest when you need to.
Sorry I haven’t been on here for a while. I have been to hospital twice recently. The first time I was vomiting with a very high temperature. I was given iv Paracetamol. Then I developed a really nasty cough with temperature so I am now on additional antibiotics. I think I had done well to get this far without any infections though!
Hope everyone else is doing ok.
Best wishes
Andrea xx
Dear Andrea,
I’m so sorry to hear you’ve been having such a rotten time lately. You must have been thinking you were “out of the woods” so long after the SCT. You were doing so well! Just shows how unpredictable our situation can be, I guess. I hope the antibiotic sorts things out for you quickly and you can get on with recovering fully from your SCT.
Take care.
With best wishes,
Peter
Hi Everyone
Peter, it’s good to hear from you and I’m pleased for you that your SCT went so smoothly. You beat me by 3 days, I was discharged on day 17 and I thought I did well.
I was 69 so I received the reduced high dose melphalan like you (i.e. MEL 140 instead of MEL 200). I think side effects like mucositis are less likely, or likely to be less severe, if you’re given MEL 140.
I don’t envy you chewing ice, I wasn’t offered that thankfully.
Yes, I remember the boredom. I wasn’t allowed out of the ward except towards the very end. The air in the ward was filtered and maintained at a slightly higher pressure than outside to prevent airborne infection coming in. There were airlocks at the entrance and between the main ward and the side wards. To pass the time I read the paper and any supplements from cover to cover, watched tv, listened to radio, strode up and down the ward, and surfed the web on a cellular mini iPad (very useful).
My neutrophil count was zero from day 7 to day 11, then 0.2, 0.4, 0.8 and 1.3 on days 12 to 15. I was told I could be released when my neuts were consistently above 0.5 (above it for 3 days running I think) and provided I felt ok.
I had been giving myself daily Zarzio injections since day 5, which boosts the counts artificially, so the doctor decided to skip the injection on day 15 and see what effect it had. My neuts dropped but only to 1.0 on day 16 and the doctor said I could go. So I could have been discharged on day 16 but it was convenient for several reasons to be collected the next day and the doctor was happy with that. I had a final Zarzio injection on day 16 and my neuts shot up to 3.1 on day 17.
My next bloods were done as an outpatient on day 20 and my neuts had dropped to 0.5, which just shows how much the G-CSF injections boost the counts. My neuts rose steadily over the next 3 weeks or so. My platelets were quite low up to day 20 (24 on day 20) then rose rapidly over the next 2 weeks.
If you haven’t lost any hair yet I doubt you will. Telltale signs are hair shedding when you wash it and lots of hair on your pillow.
Life is busy and I haven’t been on here for a while. I’m half way through cycle 3 of Revlimid + Dex. The start of cycle 3 was delayed because the Revlimid had knocked my neutrophils down to 0.7 and the consultant wanted to wait till they recovered to at least 1.0. She also reduced the dose. The cost is amazing, £4368 for 21 capsules according to NICE. (Pomalidomide is even more expensive but it’s no longer available if you aren’t already on it.)
Andrea, I hope your wrists improve soon. I’ve had a painful knee on and off in the last couple of weeks. It’s ok at the moment. I was warned a few clinics ago that when you get myeloma bone pain it’s a deep nagging pain so I don’t think it’s that. Other than that I’ve got some lingering neuropathy from earlier treatments. I’ve been referred to an ENT clinic about my voice/throat. It hasn’t been as bad during this cycle, maybe the reduced Revlimid dose has helped.
In answer to your earlier question I think you stay on Revlimid for as long as it works and you can tolerate any side effects. The manufacturer pays for the treatment if you’ve been on it for 26 cycles – I’m not sure if it’s the total cost or the cost after 26 cycles.
Sorry to hear about your recent infections. Take care.
Dawn, I hope you are still on course for an early August SCT. It’s a bit daunting but you’ll probably find it’s a lot easier than you think it’s going to be, and recovery afterwards can be quite quick, I think I was more or less back to normal fitness in a couple of weeks or so.
Best wishes to everyone.
Ian
hi Andrea, Ian and Peter
Sorry you havn’t been so well Andrea , Ian and Peter you both seem to be doing well apart from the odd side effects. I have just completed 6 cycles of CDT , the last last cycle was rough with constant diorrhea and muscle cramps in my legs from the Thalidomide I presume. I feel relatively normal at the moment with no meds apart from muscle pains in my legs still, which makes for difficulty walking far but im trying to do as much exercise as I can. My paraproteins are now 2 ,the light chains are still 900 which they can’t understand but they have come down from 7000 so Im pleased with that. Consultant at Sheffield didn’t seem to fussed about the light chains, more concerned with the paraproteins, there seems to be a bit of mixed views about light chains. My stemcell harvest is booked for 24th August so its now starting to get a bit scary but im on this rollercoaster now so will just roll with it. Coping well so far , although I have had two hospital admissions throughout the CDT one for a chest infection and one to investigate these pains in my legs. It’s good to read your posts and I hope we all continue to do well. They have offered us a flat in Sheffield which is a few mins away from the hosp instead of a room but not sure how it works I presume if you become too ill you have to remain in the hospital. I imagine I will be in the hospital for the actual transplant. bye everyone Dawn xxxx
Hi, I am 65 and was diagnosed with MM in February 2015, after finding a bony lump on my sternum, initially by my GP and confirmed by my consultant after x-rays and bone marrow biopsy. After 4 cycles of DVT my paraproteins dropped from 55 to 0, light chains to normal, and biopsy result showed no detectable myeloma cells, which was excellent news. Spirometer and ecg arranged to be completed by 9th September but no date yet for stem cell harvest or transplant. It would be nice to be fit for my son’s wedding on 21st November 2015 but is this likely? I have suffered the usual side effects especially peripheral neuropathy with tingling and aching legs which interferes with sleep, and golf, but am allergic to paracetamol and not allowed ibuprofen (don’t know why) so need to find an alternative. The costs of treatment were interesting so can’t really complain about the tax I have paid over the years. Good luck all, Dave
Hi dave sounds like you have had an excellent response. I finished my 6th cycle last week and have a stem cell harvest bookd for 24th aug the stem cell transplnt might be 3 or 4 weeks after that. We wanted a holiday and they said said they could work around us. Is there a possibility they could wait to do the actual transplant after your sons wedding as you have had a complete response. Im not sure what the timescale is from treatment to transplant. Discuss it with your consultant. Unless they can get you booked in for barvest etc asap then you might just do it . Good luck
Hi All
> Dawn, it’s good to hear your pp has responded well to CTD. I’m not sure about the implications of high FLCs on their own, it’s not something I’ve explored. MM has so many variations. Sorry to hear about your continuing side effects. I recollect having painful thigh muscles for a while but I think it was when I was on Velcade + Dex, not when I was on CTDa. I mentioned it at the next clinic and my consultant suggested tonic water might help with muscle cramps, it contains a small amount of quinine. I tried it and it didn’t seem to have any immediate effect. The muscle pain subsided soon afterwards, but I don’t know if the tonic water had anything to do with it.
I recall some people in the States saying on Myeloma Beacon that they stayed close to their hospital while having their SCT instead of in the hospital. I think they had to wear face masks whenever they went outside. It’ll be interesting if they have this type of arrangement at Sheffield. Or maybe you’re being offered somewhere nearby to stay if your harvesting takes more than one day. Barts have a hostel next to the hospital where you can stay, for example overnight prior to admission.
You saying it’s starting to get a bit scary reminds of Cupcake’s thread ‘Getting to the scary bit now’. As everyone who’s been through a SCT says, it’s doable. And even though it didn’t work for me, if I hadn’t done it I would have always wondered whether I should have. Anyway you should find the harvesting is ok, if a bit tedious. Good luck.
> Dave. DVT? (deep vein thrombosis?) I guess you meant to say VTD (Velcade + Thalidomide + Dex). I must admit I wasn’t familiar with the term VTD, I had to look it up, and I was quite surprised to discover that apparently Velcade + Dex with or without Thalidomide has been the preferred induction therapy since April 2014 for patients who are suitable for a SCT. CTD (Cyclophosphamide + Thalidomide + Dex) was the preferred induction therapy when my treatment started in Nov 2013. Just shows that treatment protocols can change.
You’ve had the best possible response, I envy you! The spirometer and ecg checks are part of the run up to your harvest and transplant. It might be worth asking your consultant if they can go ahead with the harvest, to collect the best possible stem cells, but delay the transplant until after the wedding. On the other hand he/she might simply say that delaying both by two or three months will be ok.
Re your comment about Ibuprofen, Myeloma patients are told to avoid non-steroidal anti-inflammatory drugs (NSAIDs) like Ibuprofen because of the risk of kidney damage.
> Peter, I hope you are making good progress. I think I misread your post and that you were discharged earlier than I thought, on day 12. That’s very early. By my reckoning you passed day 50 just over a week ago so I hope you’re feeling good and enjoying life.
Best wishes to everyone, Ian
Hi folks,
I’ve been hanging back from posting until I’d got my first blood test results since being discharged from the Freeman after my SCT. Well, I’ve now got them and, while my blood counts are fine, my PPQ has gone up to 13g/l (it had been hovering around 9 before I went in). Not what we’d been hoping but, I guess we’ll have to wait for another test or two before we know whether my MM is stable at this or is progressing. Maybe my PPQ will go gradually down as yours has done after your SCT, Andrea! I hope yours has continued to fall. How often is yours checked?
My consultant is going to present my case to the MDT meeting again to see what next steps they would recommend. I’m guessing I could be joining you on Revlamid soon, Ian! Ah, well; it’s been nice not being on treatment for a while!
The actual stem cell transplant seems to have worked to “rescue” my bone marrow, though. My blood counts on 17th August were: Hb 138, WCC 3.9, Neuts 2.7 and Platelets 161. Because of this, they are saying no need to rush to start treatment again. They’ll probably let me have my holiday in September first; which is nice!
I did come home with some growth factor injections (filgrastim) to boost my white cell count. Using three of these sent my white cell counts through the roof: WCC 17.34 and Neuts 15.35! So we stopped those, and the counts had come down to 3.10 and 2.17 resp. a week later.
I think you’ll have had your stem cells harvested yesterday, Dawn. Hope it went well. It’s a bit tricky being hooked up to the machine for hours and not being able to move your arms. Did they warn you not to drink much to avoid the need to visit the loo?? My stem cell collection was done in December 2014, and they gave me them back in June 2015, so there’s no problem with keeping them frozen for a considerable time between harvest and infusion.
It’s great to hear from you all. No doubt we’ll post more often when we get back into the short days. I, for one, seem to spend less time at the computer when the evenings are light.
Hope you are all feeling well (considering our situation!). Keep on keeping on!!
Best wishes,
Peter
Hi All
Dawn, I hope you managed to complete your stem cell harvest. I deferred my transplant till after my sons wedding after my harvest which I am very grateful for. At my last appointments my pp was 11.7 and 10.2. It was 12.8 before transplant so doesn’t seemed to have budged much! I seem to be around the same level as you Peter. My white cell count is low at 2.8 so I am wondering if I will be able to have my immunisations at around 6 – 7 months as originally planned. I am still debating about when/if to return to work. I am still taking Acylovir and Septrin, do most people take this for 6 months?
Best wishes to all
Andrea
Hi Ian , Peter and Andrea I am going into Sheffield Hallamshire tomorrow for my stem cell transplant. I am a little anxious now but I am sure I will cope. Everybody has a different story to tell but everyone says it is doable. Fingers x I will cope with all the side effects. Dawn x
Hi Dawn, Peter and Andrea
Good luck Dawn, I hope your transplant goes smoothly. I’m sure you’ll cope well. You will have lots of infusions for the first couple of days or so, then for the next few days you’ll probably wonder what all the fuss is about. After that it’s a case of getting through each day, but each day is a day nearer to your discharge. If I had to give just one piece of advice it would be to try to stay active, I’m sure it helps with recovery. Take care.
> Peter. Sorry to read your first pp result is a bit disappointing, but it’s best not to read too much into one result – it might just be a high result within the margin of error – better to wait for a few more to see what the trend is. The main aim is long remission, I don’t know if a deep response is necessary for that. Hopefully you won’t have to join me on Revlimid for a long time, but at least it has survived the recent CDF cull.
My pp seems to have stabilised in the low to mid 30s since starting Revlimid. I’m currently on my 5th cycle.
> Andrea. Barts sent a schedule of immunisations to my GP and a copy to me. It started with Prevenar at 3 months post transplant. I’m one year post transplant and I’ve completed most of the schedule. It’s been driven by me, I’ve made all the appointments.
Some of my immunisations were given after I started Revlimid, which hits your blood counts. I happened to have an appointment with a GP nurse for two inoculations the day after a blood test at Barts. My neutrophils were 0.7 and WBC 2.1. When I went for the inoculations I told the nurse and asked if it was ok to go ahead. She was unsure so I suggested she could phone my CNS at Barts to check. She did and the CNS checked with a doctor who said it was ok. It was all done in a few minutes, which was impressive. So I should think you will be able to start your immunisations as planned. Are you having them done at the hospital or at your GP’s surgery? Whichever it is, your CNS will be able to advise you.
Re your question about Aciclovir and Septrin, I’ve been on Septrin (Co-trimoxazole) continuously since my induction treatment (CTDa) started nearly 2 years ago, with the exception of about 4 weeks during and after the transplant. I’ve been on Aciclovir continuously since my second treatment (Velcade + Dex) started about 18 months ago. Maybe they would have been stopped if I’d had a good remission.
Best wishes to everyone, Ian
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