[jiffieParticipant]

Hi, thought I would give an update on how my treatment is going so far. I finished the 4th cycle of 4 drug chemo at the end of December and it has gone well regarding reduction of para-protein albeit I suffered more intense side effects throughout cycles 3 & 4. I don’t have numbers for para-protein levels after cycle 4 as yet, but they had reduced from 56 to 5 after cycle 2, so based on this they started preparations for SCT which is starting on Monday 10th Jan with the induction process for stem cell production with extraction a week later.

Following the completion of cycle 4 I was expecting to get some sort of normality back before the SCT began, however this has not exactly been the case. My expectation was that once I was no longer on the chemo drugs my body would adjust back to some sort of normality giving some relief from the side effects I have been experiencing. To some extent this has happened, I can now taste my food, my appetite has been a bit better and I have a bit more energy. However, I have been getting hot flushes and anxiety attacks, this mainly happens through the night starting anytime from 4am onwards and has been affecting my ability to get a decent nights sleep. These have been getting less as time progresses but are concerning me.

I am anxious about the SCT and this is not helping my state of mind, I’m hoping that once SCT begins this anxiety will diminish as I’m hoping it will be easier than I am imagining. I want to persevere with it as my understanding is it will extend and consolidate my remission period, however I’m a bit exhausted both physically and mentally after the initial chemo and I need to build myself up mentally to cope with what comes next.

I’ll update on how the SCT goes.

[mulberryParticipant]

Hi Jiffie, I think it’s inevitable that myeloma patients heading into SCT are anxious. We’ve got accustomed to & dealt with the induction treatment, when SCT was sometime ahead. We’ve been through an arduous process, but rather than that being the end, it’s only the beginning of the next process. We hear horror stories about SCT, and our medical teams have to tell us anything and everything that can go wrong.
It’s right that we know the risks and know what problems to watch out for, but the reality is that while most myeloma patients have some of the many side effects during SCT, very few have lots of those side effects (and a very few have none at all). Most of us have just a few, and most are later willing to go through the process again.

Once you are over the hurdle of SCT, in a few short weeks, you are likely to have an increasingly good quality of life. Myeloma can start to play a minor role in your life, and you can get on with things you enjoy doing, COVID permitting.

Statistically SCT does extend remission times for us, particularly now that low dose maintenance lenalidomide is available.

I really hadn’t appreciated how ‘normal’ my life, my energy levels and general health would return to after SCT, and for me it was a remarkably quick process. Even having contracted a parainfluenza virus in hospital during SCT, I felt significantly on the mend by day 37 and remarkably well by day 60 and was abroad on holiday on day 102.

It’s inevitable that you will worry,but try also to keep hope alive. It’s only this side of SCT that I’ve really appreciated the term “treatable” as it relates to myeloma , it truly is more significant than the “incurable” tag.

With best wishes for the final part of your induction, for your cell harvesting and for the stem cell transplant process itself.

[jiffieParticipant]

Hi Mulberry, many thanks for your reply, it has made me feel a lot less stressed re the SCT and has encouraged me to look forward to a time, hopefully later this year, when I can start to rebuild my life.

After the SCT I believe they are planning to put me on bone rebuilding/healing courses to repair the damage caused by the Myeloma. ATM it is hard to do much without getting severe back pain due to the 3 compressed vertebrae, so hopefully this will ease given time.

I forgot to mention that I had a pin put into my left humerus to prevent fracture, this was done during the last week of cycle 2. Both humerus have areas where the bone has thinned drastically but is worst in my left arm so the surgeon thought it best to put a pin in to prevent fracture which would have meant a more complicated procedure. Happily it all went well and is now pretty much healed.

Again thank you for your reply it was most helpful, best wishes to you and hoping your remission will continue for many years to come.

• This reply was modified 2 years, 10 months ago by  jiffie.

[richfsModerator]

Hi Jiffie,

I just wanted to echo Mulberry’s encouragement that the SCT is bearable and very worthwhile. Hopefully you’re now through your SCT and on the path to regaining your strength and health.

Myeloma UK have just trained some peer-volunteers to assist on this forum. I am one such person and was treated for myeloma in 2019 with VTD and a stem cell transplant.

It did take me a while to get my energy levels back after the SCT, but I live a mostly normal life these days with lots of walking and some cycling (1000 miles of cycling in total last year). Do give yourself time to rest, the fatigue lasted for months in my case.

If and when I need further treatment, I will gladly go though the SCT again with the aim of having many more years of life ahead.

Have you had bisphosphonate infusions to aid bone recovery? I had these monthly for 18 months and now quarterly, they’re very helpful and don’t seem to have any (short-term) side effects.

Do let me know if there’s any advice you’d like, it’s great that you’ve joined us on this forum – you are not alone.

Best wishes,
Rich.

[jiffieParticipant]

Hi Rich, many thanks for your post, great timing, I go in for my SCT this week starting tomorrow with getting a Hickman line fitted, chemo on Thursday and SCT on Friday.

I have been getting quite anxious and your post has helped to calm me and show that there is a worthwhile future following the SCT. Just have to get through it, hopefully with not too many side effects.

I understand that my consultant has plans for bisphosphonate infusions following the SCT, so hopefully they will speed up repairing the bone damage I have already had. I am still in a fair amount of pain from the damage, especially in my back from the collapsed vertebrae, so I’m hoping this will diminish as the bones heal. I guess it won’t restore me to my former height, I was 5ft 7in, now I’m 5ft 2in, so I guess that’s how it’s going to be from now on.

Anyway, your post has been very helpful and couldn’t have come at a better time.

Thanks again,

Geoff

[richfsModerator]

Good luck with the SCT Geoff, you’ll get through it. Are you allowed visitors? The worst part of the SCT is the isolation. I found it really helpful having a bluetooth speaker and listening to the radio, podcasts, comedies etc. You might feel too tired and weak for many phone calls, but I found it really helpful hearing from people – little and often.

Do ask for anti-sickness medication from when you first have the chemotherapy drug as the nausea can be managed, but the medical team might not give you anything for it in time. I caused myself some more bone pain the morning after the transplant from retching which could have been avoided.

Take some snacks in, I found ginger nut biscuits the best as they are easy to nibble on and also ginger helps with nausea. The only thing I could eat some mornings was porridge, so ask for that if they have it!

You’ll probably have a few rough days when your gut isn’t functioning very well, but it will pass in a few days, your bone marrow will sort itself out, you’ll get some appetite back, and you’ll be on the path back to good health.

I found it helpful to think that for every day that I was in the isolation room, feeling weak and rotten, I was buying myself a month’s worth (or more!) of healthy days in the future.

Do get in touch anytime, you’re not alone and you will get through this, just take one day at a time.

Rich.

[jiffieParticipant]

Hi Rich, thanks for your advice. I’ve opted for partial outpatient, so for the first week, all going well, I’ll get home each night. Next week I’ll probably be going in on Wed or Thurs for a stay of approx 1-3 weeks depending on how I get on. I’ll be going into a specialist unit in the Western General in Edinburgh. It’s recently been refurbished and is a very nice modern facility, the rooms are a decent size and the staff are very friendly and professional.

I have a document which details every step of the way including a lot of detail regarding sickness treatments, they are of the opinion it is better to have anti-sickness drugs in advance of sickness, rather than waiting until it happens and they have a lot of different options available. I think they have this well covered and from previous experience with the staff I have a lot of trust in them getting things right. I think they did something like 60 SCT’s last year, so they are very experienced in this procedure.

I’ve had about a month between the stem cell gathering and SCT, for about the last 3 weeks of this I have actually felt “normal”, had a good appetite and been able to taste my food. This is the first time for around 6 months this has been possible, prior to the gathering, I was on chemo pretty much solid for 4-5 months. This has been an uplifting experience as I’d forgotten what it was like to actually enjoy my food, it also gave me a chance to build up my body again and put some weight back on. Combining this with getting out walking whenever possible has got me back into some sort of decent shape in preparation for the SCT. I bought some energy/protein powder packets and have been having one each day as a milk shake, this has also helped to build up my body again.

I’m hoping that by the time the summer arrives I’ll be recovered enough to appreciate it and get out walking etc. When we retired 6 years ago, (retired at 60), we bought a campervan/motorhome and our aim was to explore Scotland which we did for the first few years. Covid brought that to an abrupt halt and due to the bone damage I decided I wouldn’t be able to maintain the van as it required a lot of physical heavy lifting. So we sold it earlier this year. However, we still hope to get up into the Highlands once I have recovered, whether to stay with friends or hire chalets etc, so that is something that we are looking forward to and keeps my spirits up when I get particularly depressed about things.

Anyway, thanks again for your advice, I truly appreciate it and if there’s something I’m not sure about I’ll definitely give you a shout.

Geoff

PS I am allowed one visitor, so this will be my wife. We live about an hour from the hospital by car so she will be able to visit every day if I feel up to it. We have 3 sons and 2 grandchildren who I can talk to on Facetime or Zoom, so hopefully I’ll not get too lonely!

• This reply was modified 2 years, 8 months ago by  jiffie.

[tony642Moderator]

Hi Jiffie,

I am also a forum peer volunteer. I echo everything that has been said already. Before SCT I had terrible night sweats. I was absolutely drenched in sweat, which then made me very cold so I couldnt sleep. These dissappeared after SCT, and I would definitely have it done again should the need arise.

If you have a fridge/freezer in your room, I found having plain yoghurt, ice cream and ice pops to suck a good way of refreshing me and getting some sugar inside me as I was off eating altogether. As others have said previously, it is bearable, so good luck with it and I hope it has the desired effect.

Regards, Tony

[mulberryParticipant]

Best wishes Geoff. It will be interesting to hear how you get on with being at home for the early days. I felt ok (just tired, not unwell) until neutropenia hit on day 7 & think I would have done well being at home during that time.
Don’t forget to chew & suck as much ice as you can possibly manage prior to & during the melphalan infusion, it really helps recovery if you can avoid getting a sore mouth/throat (mucositis).
Hopefully you’ll be up & out in a Jiffie.

[jiffieParticipant]

Thanks Tony and Mulberry for your kind wishes. The hot flushes I was having have actually diminished the past 3 weeks but I still get them on occasion, usually through the night. There was a spell when I was getting similar to you Tony, soaked in sweat to the point I would have to put on a fresh pair of jammies but it’s not so bad now.

I have a pile of ice pops to take in to use during the melphalan infusion, there is not a fridge in the room but the staff will freeze them for me in their fridge. There is a drinks cooler in the room but not much use for ice cream etc unfortunately.

So fingers crossed now that it’ll not be too bad, though tbh I just want to get on with it now and get out the other side, hopefully in a jiffie mulberry 🙂

[kh0305Moderator]

Hi Jiffie,
Im also a discussion volunteer and just wanted to add my reassurance. Whilst I haven’t been through it myself being a carer, I was so pleased to see how well my dad recovered from his SCT. I echo mulberry’s advice to keep sucking on as much ice/lollies as possible throughout the melphalan infusion – though my dad moaned like crazy, I ignored him and kept feeding it to him non-stop throughout and he got away without any mouth/throat issues afterwards so definitely worth it! He suffered from fatigue at differing levels for about 6 months post SCT but he then got back to normal speed/stamina on our dog walks and him and mum did a trip to the USA as well as a motorhome tour round the uk so hopefully it won’t be too long before you’re off to the highlands! Good to hear you can have a visitor, that’ll help and I’m sure the grandkids will keep you occupied over zoom. Dad managed 7 years following his SCT before he relapsed and throughout that time was back to his normal self. He also had the bone treatment to repair the damage caused by the MM and was pain free during his remission period so hoping you will have a good recovery too.
All the best for this week x

[richfsModerator]

Hi Geoff,

How are you getting on? Hopefully all went smoothly for you with the chemo and transplant? Have you stayed at home since then? I’m sure that you’ll be very well looked after during your stay at the Western General – OK, so it’s not the sort of holiday any of us would choose, but at least you’re brought 3 meals a day you don’t have to do any washing up!

Don’t worry about replying, I was REALLY tired for the 2 weeks after the SCT and just getting through the day was enough for me, although I was surprised that it was really just the 4-5 days in the middle that were rough, the body does an amazing job of recovering from the treatment, it feels so good once your stem cells get back home and start making all those vital blood cells again.

We’re thinking of you, just let us know if you need anything. If you feel tired and unwell, do know that it will pass and it’s worth it to get back to good health and the things (& people) that you love.

Rich 👍

[richfsModerator]

Hi Geoff,

Just a quick line to say that we’re thinking of you and hope that you’re getting on OK with the SCT. The middle week was pretty grotty for me, but once I got some appetite back things improved steadily.

I hope that you have a view from the isolation room, you’ll have missed some rainy days, but spring is certainly in the air and you’ll have brighter days to come out to.

I won’t waffle on as you’ll probably be exhausted, but wanted to send you our best wishes and look forward to hearing how you’re getting on.

Best wishes mate,
Rich 👍

[richfsModerator]

Hi Geoff, just checking in to see how you’re doing mate. I just wanted you to know that we’re thinking of you and hope you’re doing well with the transplant and recovery.

Stay strong,
Rich 👍

[jiffieParticipant]

Hi Rich, many thanks for your kind wishes. Haven’t felt well enuff to reply until now.

The initial stage of the procedure went well and I was home for about a week afterwards. I felt extremely fatigued but not too bad. I came into hospital a week later & all went well for a while but then got an infection which was eventually diagnosed as a strain of ecoli. Unfortunately my system kinda crashed at this point and I spent a few days in ICU while they stabilised my system. I was also put on various anti-biotics to deal with the infection which is now under control, they stopped the anti-b’s today as it has cleared up.

More to follow.

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