[ianbParticipant]

Hi everyone, I am not new to Myeloma but new to this forum so I hope i am posting this in the correct place.  So, like i said, HI.  I am  52 year old male who was 1st diagnosed with MM back in Feb 2009 and initially had a horrendous time between diagnosis and getting home from hospital 5 months later. I was not allowed to move for the 1st 3 months due to spinal cord compression, to be honest, i was almost paralysed from the shoulders down. The doctors, surgeons and physios at 9 Wells hospital, Dundee, did an amazing job on me treating the Myelome, fixing my spine and getting me walking again, but that might be a story for another day.

Right now, having moved south from Arbroath in Bonnie Scotland to Arundel in bonnie West Sussex my treatment has been spread between Chichester, Portsmouth and Southamptom.

Now, the consultants, at Chichester and Southampton are very keen for me to go down the SCT route. I am currently 3 cycles into a 6 cycle treatment of Lenalidomide and have had a great response. After cycle 1 my PP level was undetectable. This also happened when I was treated over the years with Thalidomide and Velcade. I just seem to be lucky with my treatment responses but this time as I probably feel s good as I have done since 2009 they have asked me to stop my Lenlidomide after just the 3 cycles and consider SCT. If I pass all the pre  tests then I am penciled into Southampton for harvesting early November with the transplant early December, which i really have to think hard about as it will probably mean Christmas in Southampton.  So, all this preamble (I do rabbit on a bit, sorry) is basically leading up to asking if any of you fine folks have been through SCT at Southampton and if you have would you like to share your experience with me and maybe give me some advice or pointers on what I can expect from them or maybe even things I need to consider taking to hospital with me. I’ve got to be honest, any tips or advice would be greatly appreciated as I’m a little bit on the fence just now, one minute I’m totally up for it and the next I’m a dithering mess.

I’m gonna shut up now, sorry for babbling on so much.

I’d love to hear from anyone who has been through this at Southampton or just anyone who thinks they can help.

Thanks for taking the time to read this and an even greater thanks if you reply.

Take it easy folks,

Ian

[louishenryParticipant]

Hi Ianb

I think I’ll be in Southampton for stem cell harvesting in October, asct in November, so I can’t tell you about that yet but I will tell you that virtually all my treatment has been there as I am on the Myeloma XI trial and absolutely everyone, doctors, nurses, assistants, tea ladies, are brilliant. We have plenty to worry about but I never worry about how I am treated at Southampton.

[lizfParticipant]

Hi Ian
I had a SCt at SGH on 26th June 2015 and I have to say it wasn’t nearly as bad as I thought it would be.I was diagnosed Feb2011 with collapsed L5 and had Kyphoplasty and Spinal Fusion in Mar 2011 at QA followed by radiotherapy. I then was reviewed 2 monthly on the watch and wait and started treatment last Nov when I had further back ache with a PP 39. I was on myeloma X1 trial of CCRD for 5 cycles and went for harvest with PP 2. Hickman line in and I waited nearly 4 weeks for a bed on the unit at SGH. I was fit prior playing tennis and walking the dog on the beach daily and am 52.
On admission it all worked like clockwork the infusions,high dose chemo and transplant 48 hrs later. I did have a sore throat and intestines felt a bit sick on solid food and had diarrhoea but as soon as your cells start regrafting you then feel better.I spiked a temp one night and was rapidly put on antibiotics had a few bags of platelets when they were low but that was all. I went in healthy eating well doing exercises with equipment I brought in for about a week then felt more tired off food and tea/ coffee occasionally sick then cells perked up and I then started to feel better.I was in for 16 days all over Wimbledon and it wasn’t that bad being in the room as I had 16 visitors plus my family and the nurses are in and out day and night. The staff were all lovely and all knew their job and I felt totally at ease and self cared throughout getting showered,dressed hair and make up on every day.
On discharge I felt ready to go and fit and we walked on the beach that afternoon with my dog and I haven’t looked back. I went straight back into my role as mother and wife and have had no complications at all. I only cut the last bit of my hair last week as although I lost some in Hosp I can out with a full head of hair which I had cut into a shorter bob. Apart from a dry mouth decreased taste and appetite I felt quite normal and my bloods have come back to near normal and I am doing all my normal things and started playing tennis again. I even have a new puppy to increase my workload. I can’t almost believe I have been thro the Stem cell transplant and come out the other side quite easily but discussed this with others on sat at QA myeloma support group and others felt the same. I know we are all different but you tend to get worried by other comments on the forum. Certainly for me it wasn’t as bad as I thought.ask away if you want any other advice
Liz F

[annlynnParticipant]

hy ian i had my transplant august 2014 not in southhampton. but in. newcastle freeman i agree with most of what liz. has just said its certainly not as bad as. i thought it. was going. to be i was in seventeen. days first bit all smooth. a few temperature spikes in themiddle bags og
f stuff going. in. for a few nights. then again as liz. said. you feel you turn a corner i did loose all my hair on day fourteen or so but was ready with. wigs ect and make up on to face the world consultant to l d me thepeople with the positive mental attitude do the. best. so you go for it . i took a book in with me and wrote a journL of how i felt daily then if i need another sct ill refresh my memory to kn o w. i got over the bad days. good luck watever you decide but if your in early dec. i bet your having. xmas lunch at home with family xx. Ann

[janwParticipant]

Hi Ian,
I was 53 when I had my SCT after four successful cycles of CDT. My consultant advised that I would be able to return to work after three months. I know some myeloma patients recover very quickly after their SCT, but I suffered with nausea, severe fatigue and bone pain. For the first six months, I had no energy and found even pottering around the house too tiring. It took my gums three years to recover from the drugs. But on the positive side, the SCT has managed to give me five years of remission, which is much longer than I expected to achieve. My energy levels improved slowly over my period of remission, but I have learnt to adjust and listen to my body when I need to rest.

I think you will always be worried about going through a SCT, but at least you have this as a possible treatment option. SCTs can provide you with the best chance of achieving a long period of remission. As I rapidly approach my first relapse, I am also concerned about going through another SCT. My head tells me a second SCT is my best option, but my heart sinks at the thought the side effects of the treatment.

All the best
Jan

[mervyn53Participant]

Hi Jan

I read this post with interest. I had my first SCT a few months ago and am not feeling too bad apart from the hair loss.

What makes you say that ‘as I rapidly approach my first relapse’ ?  Your paraproteins have gone up ?

I ask so that I can watch out for whatever you say the warning sugns are.

all the best

Mervyn

[janwParticipant]

Hi Mervyn

If it wasn’t for the regular monitoring of my blood and urine at clinic appointments, then I wouldn’t know that I was relapsing. I feel absolutely fine. I’ve had bone pain and fatigue ever since my SCT, but the bone pain is controlled with pain patches and I’ve learnt to live with the fatigue by resting when necessary.

I have light chain myeloma, with normal blood test results and normal paraprotein levels. Therefore the only way of knowing whether my myeloma showed signs of returning was via the urine tests carried out at clinic. After my SCT, my light chains were very low, however over the past fives years they have gradually increased to a level which now requires further treatment.

When you go back to clinic, your consultant will usually ask you whether you feel OK, whether you have had any infections, bone pain, kidney pain or any concerns about your health. Your consultant will then review your blood and urine tests to see what is happening to your myeloma levels, blood counts, kidney functions, platelet counts, neuts, etc in order to obtain a full picture as to what is happening to your myeloma. You need to ask what your paraprotein levels are from your blood tests if you want to monitor whether your levels are increasing. If there are any reasons for concern, you will usually be asked to attend clinic on a more regular basis.

Hopefully you will achieve a good period of remission following your recent SCT.

All the best
Jan

[briancParticipant]

Hi

I had SCT in Southampton in July this year.

Everything went as planned apart from the actual admission day.

The harvesting session went well but I was very sore prior to the Harvest taking place.

They give you something to help stimulate stem cell production ( I’m sorry but it seems like I have had so many drugs I can’t remember names) in the week before the Harvest and this made me very uncomfortable.  I later learnt that this was a good sign as it means that something is happening.

Anyway I was able to do the Harvest in one day others I understand have to come back the following day if not enough stem cells are collected.

The next hurdle was getting a Hickman/central line fitted. .

not a big deal took about an hour while under local anesthetic. only problem with this came when have a shower but nothing insurmountable.

I was due to be admitted on 23rd June and planned to finish work etc. to suit but because there were no beds available it was actually 15th July when I got in. The hospital did their best to keep me informed of what was going on but I think it is only when some one else is well enough to be discharged that they know when beds will be available.

I went in on the Wednesday evening, had large dose of Chemo on the Thursday and stem cells were returned on the Friday.

there were also lots of other drugs to help reduce infections/ settle the stomach etc but nothing major.

I think I then spent about a week going down hill and then a week getting better.

The nurses told vital signs every 6 hours or so and Blood once a day but other than that it was a waiting game. The doctors came round mid morning each day and you had a good opportunity to discuss how you felt. all the staff were very helpful were always available 24hrs a day.

I was one of the lucky ones who didn’t get an infection while in the hospital and was able to go home 2 weeks after the return of the Stem Cells.

My advice for what it is worth is to get up /dressed every day, some days I felt very weak but it is easy to let day slip into night and do nothing which doesn’t help with the recovery.

A Physio came in and gave me a series of exercises to do each day. I did most of them as instructed and again I would advise pushing yourself a bit to do as much as you can to aid later recovery.

When I got home I did go for a sleep in the afternoon for a few days but apart from avaoiding anyone who might have given me an infection life pretty soon got back to normal.

I am now back a work full time (office job). I was planning on going part time but once I got used to getting up in the morning it was easier just to do the normal working week.

I tried not to spend too long looking things up on the internet, most posts seem to be about bad news and can be a bit scary. for me the worse part of the SCT was really just the boredom of being confined to a room for a couple of weeks ( I was allowed out to exercise after about day 10)

I know that the support of my wife while I was in the hospital was crucial to my recovery, she visited and bought clean clothes each day and it meant that I couldn’t just sit and watch daytime TV all day. you can have visitors at any time of day and although I didn’t need it they do have room where visitors can stay if travel is a problem.

It is difficult to say I recommend have the SCT but if you need it you need it and now about 2 months later my life is more or less back where it was and I hope to have a long period of remission because of the SCT.

Sorry for the ramble I have just been typing as I think but if I can help with any further information please let me know

Brian

[ianbParticipant]

Thanks to everyone who has commented back, i really appreciate it.  I’ve got to be honest, i am a little bit on the fence here.  Having had a really good response on Lenalidomide and the lack of data on staying on a maint dose of Lenalidomide against having SCT is niggling me a bit.  I know the history behind the SCT but my consultant said that there may be an argument for not going down that road now even though he is keen for me to do so.  I have always put my trust in my various consultants, up in 9 Wells, Dundee and now down here in West Sussex and whatever they suggested went but this one is troubling me a tad. I just don’t have a warm fuzzy yet. Obviously the risks involved are a concern.  I am not a straight forward Myeloma patient, having had all sorts of infections, surgeries, instabilities that side effects do worry me, including the 5%mortality bracket my consultant said i fell into. 5% may sound a decent risk to many and in my heart i know i shouldn’t give it a second thought but the fact he mentioned it a couple of times has planted it in my head now, silly, i know. Anyway, today is  sit on the fence day while tomorrow will probably be a lets crack on with it day.  That’s kinda how it’s going just now. But, should i go for it, and i probably will tbh, i will be much better prepared thanks to all your comments.

It’s good to talk, as they used to say.

Keep Smiling,

 

Ian.

[Author]

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