[jiffieParticipant]

That’s good news, hope it works out for you.

[jiffieParticipant]

Thank you both for your replies and info.

I live in Scotland, I believe the approval for new treatments is a different body here, not NICE, so I’m not sure what the situation is here re this treatment.

After doing a bit of googling I found this info.

Scottish Medicines Consortium (SMC):
The SMC, which approves treatments for use in NHS Scotland, has not yet approved cilta-cel for broader use.

I am not sure if NICE has an involvement in approval in Scotland, i.e. does it first have to go through NICE approval before being considered for approval in Scotland. This has not been the case for other treatments so I would assume it is not the case for Cilta-cel.

The link below would suggest that this is not the case, as one of the new treatments in the link was approved in Scotland before NICE approved it in England and Wales.

https://hcp.myeloma.org.uk/news/two-new-myeloma-treatments-for-scotland/

I was diagnosed in 2021 and have undergone initial chemo followed by a SCT 3 years ago in March 2022. I am currently in remission but unfortunately my condition was fairly advanced when first diagnosed, so I have quite a lot of initial damage. I had a follow up MRI this January as I was experiencing a lot of pain in my back. My initial MRI at time of diagnosis was 3 compressed vertebrae and significant damage to both my humerus bones, I had a pin put into my left humerus to prevent it shattering.

The MRI in January showed I now have 6 compressed vertebrae, one being at the bottom of my neck which has been giving me pain, and also damage to a rib. My Consultant has emphasised that this is previous damage which is coming home to roost despite Zoledronic Acid infusions and not new damage as Myeloma cells are not yet detectable in my bloods.

Anyway, discovering this new treatment has given me hope as it will have to many others. Hopefully this will he sorted out and introduced. However, the other new treatments look promising for extended remission, so we’re getting there.

Again, thanks for the info, much appreciated.

[jiffieParticipant]

Not sure if a couple of these links are for other MM treatments that J&J have developed, the detail confuses me a bit, but there are a couple that definitely relate to this new treatment.

[jiffieParticipant]

Hi, I had this problem and it was really bad, my scalp felt like it was on fire and I had a lot of patches and blotches all over my body, which were painful. I ended up applying vast amounts of cream on my scalp, which helped for a while but eventually it became unbearable. I made the difficult decision to stop taking it, quality of life vs length of life sort of thing.

The Consultant I had at the time was not pleased with my decision and seemed to lose interest in my well being. He was replaced by a new Consultant who I got on much better with, he told me this was a common problem and affected people differently. He told me that in the end it doesn’t make an awful lot of difference to the end date.

Good that others have found solutions to this problem, unfortunately it was too severe for me.

Still in remission 3 years after my SCT, so fingers crossed.

I read in the New York Times that they have found a cure for MM and are currently undergoing trials which have proved very positive. I’ll open a new thread in Treatments with links to this, sounds really hopeful.

[jiffieParticipant]

Thanks for your kind wishes Toni, much appreciated.

Hi Jane, thanks again. Yes I am at home and recovering well, today I had my Hickman Line removed, phew what a relief!

Although it has been a traumatic experience the SCT has worked well with my blood counts now at normal levels, so once I get the fissure problem sorted I am looking forward to starting a normal life again and hoping that my remission period is a long one.

I realise I still have a way to go yet with inoculations, bone repair treatments etc, but I am starting to feel positive about the future, in contrast to the low I hit at the early stages of the procedure.

So onwards and upwards as they say 🙂

[jiffieParticipant]

Hi Jane, thanks again for your kind replies. I had either an anal fissure or fistula back in the 1990’s which was fixed through surgery, so it has always been a fear that I would get another at some point. Of course treatments have moved on and new treatments are now available which is encouraging.

I have been using Diltiazem Cream as prescribed by the surgeon a week ago and it is working really well to reduce the pain and seems to be helping it to heal, I was also taking a strong anti-biotic until the end of last week. The volume of discharge has reduced fairly substantially, so the discomfort has also reduced.

I am hopeful that this problem will be resolved within the next few weeks.

Other news is I’m having my Hickman line removed tomorrow at the Victoria Hospital in Kirkcaldy, as long as they have an available bed for the afternoon, as I no longer require any transfusions. This will be a big relief and means I can take a decent bath which will help to ease the fissure problem.

Generally though I am feeling much better physically and mentally and am now looking forward to transforming this skeleton that I have become back to some sort of healthy body! Next will be getting all my inoculations again and then onto bone healing procedures.

[jiffieParticipant]

Hi Jane, thanks for your kind wishes. Yes it was quite scary, at one point it was a fairly close thing but they managed to stabilise me eventually.

Hi Rich, thanks for your support. Yes I’m still at home, unfortunately last week the problems I had with my rear end developed into something more serious. I ended up going back to the Western General for examination, a surgeon examined it and determined I had an anal fissure, it’s extremely painful and is weeping pus. He is getting me in hopefully next week for a MRI scan to determine what is going on. Following that it may require examination under anaesthetic and possible surgery.

Apart from that the actual transplant went really well and my bloods on Tuesday were almost back to normal, I feel not too bad and am obviously fatigued at times but apart from the fissure issue everything else has gone really well. I haven’t needed any transfusions for over 2 weeks now and the Doctor today said that I won’t now need any in the future.

So once the fissure is sorted I’ll be almost back to normal and hope for a long period of remission.

All the best,

Geoff

• This reply was modified 3 years, 2 months ago by  jiffie.

[jiffieParticipant]

Hi Rich, thanks for your kind post. I got home on Sunday, they decided I had been stable long enough and that the fluid retention problem was almost completely resolved. The good thing is the actual SCT has worked well above expectation with my counts being almost back to normal, the only thing lagging a bit are my platelets, though I was in today at the day centre in Fife and they were sitting at 60, they were 50 on Sunday, so they are heading in the right direction. All the problems I had were separate to the actual transplant and were caused by getting an infection just at the wrong time. To deal with the infection and the effects of it they filled me up with fluids which spurred off the water retention problem and created skin problems when the swellings reduced. I had no mouth problems at all, except a very small ulcer which disappeared after a day or so.

I actually have had my appetite back for a few weeks now and am literally now wolfing down my food. Strangely my taste went awol on Sunday but is now returning to normal. I though this might have happened at the beginning so it came a little out the blue. I too am a veggie though I’ve decided to eat fish now for the easy protein intake.

I’m still getting a bit fatigued around 4pm but just have a little nap and feel better afterwards. So this week I’m taking it easy resting up and recovering now that I’m home. What a difference your own bed makes, getting some great sleep which is speeding up the healing process.

Again, thanks for your support I really do appreciate it.

• This reply was modified 3 years, 3 months ago by  jiffie.

[jiffieParticipant]

Thanks Rich, truly appreciate it.

[jiffieParticipant]

To stabilise my system they filled me up with fluids which led to my legs, testes & penis swelling up with excess fluids, they are now getting this under control, I won’t get home until they are happy with progress.

On the positive side my bloods are back to near normal with my neutrofils hitting 1.88 a couple of days ago. So the actual SCT is working really well now with the remaining problem being fluid re-tension.

So, I’m hoping to get home next week at some point. I’m feeling pretty good today, just about to have breakfast 🙂

[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.

[jiffieParticipant]

Hi chickenwing, as you may have read in my post I am going in for SCT this week and although I have had many reservations I decided to go ahead with it. My consultant told me that they rarely do a SCT if you are over 70, I’m 66 and concluded that if I don’t do it now I may not get the chance to do it later. By all accounts it does seem to extend the remission period, so worth doing.

Something else that tipped the balance was a lady I met while doing the initial chemo cycles, she had lymph cancer and opted initially against a SCT. Her remission period had only lasted 2 years and she had to go through her chemo again, this time she opted for the SCT following the chemo.

It made me think, better to do it first time round while I am reasonably fit.

I have a full head of hair and will regret losing it, but it’s only temporary and will grow back, hopefully it’ll grow back brown not white as it is now 😉

All the best, hope things work out well for you.

Geoff

[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 🙂

[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 3 years, 4 months ago by  jiffie.

[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

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