[briggs-family1974gmail-comParticipant]

Can anyone tell us what to expect from stem cell harvest and transplant. Are you completely isolated in hospital and how soon afterwards do you feel a bit better ?

[mulberryParticipant]

There are a pretty wide variety of “normal” responses across patients, and unfortunately it doesn’t seem possible yet to assess beforehand any individual patient’s experience.
Bear in mind that ethically drs have to tell patients everything that can go wrong, all recognised side effects even those that are pretty rare. In practice patients rarely experience all the side effects, or none of them. It’s difficult for Myeloma patients to assess the risk because we tend not to know personally anyone whose been through the experience. If we were going into hospital to have a knee replacement or whatever, we’d have a greater sense of what our risks will be.

The harvest is a benign but boring experience. Epharesis is a bit like dialysis (I think, although I haven’t experienced that). The patient sits up on a bed in a specialist ward, cared for by a personal nurse. Blood is taken from one arm, through a spinning machine to remove the heavier stem cells then the remainder of the blood products are returned into the other arm. This doesn’t hurt but you will have limited use of both arms so will need help. I found I could hold a book and more or less feed myself a sandwich but I would have needed help toileting, had I needed that. (So dress accordingly)
The nurse will test whether stem cells are coming through early on. If they are not, the process is usually stopped and a more expensive injection of stem cell stimulator given before trying again. If a limited number are coming through then the patient may have to return for one or two extra days. Some patients have so many coming through that the process only takes a few hours, but it’s more normal for it to take about 8 hours.
I had no after effects from epharesis, in fact I felt remarkably well in this time between harvest and hospital emission, which in my case was nearly 6 weeks. Despite the inevitable fear factor of the impending transplant, I was able to plan a few day trips and nice things to do to distract me from scary thoughts of the SCT itself.
I had my SCT about 8 weeks after a now friend who was diagnosed at the same time. Despite her being in her 40s and me being early 60s we got on well & shared experiences. Within minutes of having the melphalan my friend was sick. She continued with extreme nausea and frequent sickness for 12 days, diarrhoea and she looked grey and felt dreadful. She could eat, but only small amounts of things she fancied right at that moment, so was dependent on her family buying her food from the hospital based M&S.
I supposed my experience would be similar. But mine was much more benign. I had the melphalan, smelt of sweetcorn (which is normal & comes from the solution the cells are frozen in). I felt absolutely fine for about 5 days, although I had some diarrhoea & urgency (but no pain). For the following 3 days I just felt increasingly tired and a bit rubbish and my taste buds were odd (eg I couldnt stand the taste of water- I’ve heard other patients say tbis too although I still dont I understand why) I had no mouth problems. Mouth sores can be a major cause of patients having a very miserable experience but can often be avoided by using huge amounts of ice (go absolutely OTT) before, during and after the melphalan infusion for about 40 minutes in total. It may put you off the icepop or type of ice lolly you use (I still can’t tolerate the smell of camomile 5 years later- I’d made camomile ice cubes to use) The next few days I was totally washed out. I just wanted to sleep all the time and although family visited, I wasn’t really up to interacting with them. The hospital protocol of waking patients every few hours to check them didn’t help this. I couldn’t concentrate on anything and just felt rubbish, but wasn’t sick as long as I ate something (cheese & biscuits!) literally as soon as I was woken up. For some reason breakfast was served about 2 hours later. If I waited, I was sick. At all stages I made myself get up, showered and dressed which helped psychologically.
On day 12 I woke up thinking I felt a little better, within hours I knew I was over the major hurdle and by lunchtime I was estatic, I felt such relief.
I was discharged on day 14 but was readmitted on my first check up on day 16 because I’d caught a virus in hospital, was sick a few times at the Haematology Day Unit, and I was kept in a further 5 days. However I didn’t feel really ill,and this felt more like recuperation. I was able to do all those things I’d taken to pass the time during SCT which I hadn’t been able to concentrate on.
Once at home I was much more tired than I expected and couldn’t do much but watch films or listen to listening books for a week or so but by day 37 I felt better and was pottering around the house and garden. I steadily felt better over the following weeks, pretty much back to normal by day 80 and frustrated that we couldn’t go on holiday until day 100. The holiday was a ‘normal’ active holiday with some long treks- a very good distraction from myeloma and SCTs.
Many patients do take considerably longer to get back to normal or their new normal.
However the next person in our local support group to have a SCT had NO side effects at all, except loosing hair. No sickness, no diarrhoea, no sore mouth, despite drs continually warning these would happen.
All 3 of us subsequently experienced good remissions, 4 1/2 – 5 years later I am the only one who has relapsed (after 4 1/2 years) the others continue in remission and all of us would do it again (although my Dr is not proposing this for me in light of new 2nd line treatments) even the woman who had such a horrible experience.
Yesterday another myeloma patient who nearly died (of sepsis) during her second SCT (her family were called in to say goodbye to her) said she’d have a third if it was offered to her as she has had 8 years remission from that second transplant. (NICE protocol doesn’t allow for a 3rd SCT but one of our other members has had three). I was scared about the possibility of death, but when I asked the hospitals last experience of this was about 20 years before, when treatments were very different inyeloma.
I hope this helps, and good luck with the harvest and with the SCT.
Jane

[glencParticipant]

I am due to get my cells harvested in mid April and transplant a couple of weeks after so I’m interested in the replies too. I think it’s right that everyone will have different responses/side effects so listening to other people’s experiences comes with a bit of caution and doesn’t predict what our own experience will be. From what I’ve been told and heard from others I think fatigue, diarrhoea and hair loss are pretty universal. My friend had her transplant last year.. She said at no point either during the 4 months of chemo treatment before the transplant or during the transplant/ hospitalisation itself did she feel nauseous or vomit. She normally has low blood pressure and this plummeted while she was in hospital. She said she was practically unconscious for the first week and wasn’t well enough to receive visits from her husband but she picked up after that. Her hair fell out almost immediately after the high dose chemo was given. Once home she slept a lot for the first couple of weeks but gradually built up energy levels. She described the harvesting process as boring too. I’m taking my friend with me so we can chat and she can help me with drinking, eating and resetting my place in my audio book if I fall asleep!

[briggs-family1974gmail-comParticipant]

What about immunity afterwards. Do you get every small thing going and do you need to avoid certain situations, or do you try and get back to some sort of normality
Thanks for the responses.

[blobgobParticipant]

I had my transplant two and a half years ago. I would very much like to think I have got back to a relatively normal life since then. I didn’t get everything going. I caught Covid once, and that was mild. I had just had my third Covid Vaccine.

• This reply was modified 8 months, 2 weeks ago by  blobgob.

[glencParticipant]

With regarding to immunity, my consultant said blood counts should be back into acceptable ranges within a couple of weeks. This will be monitored. Neutrophils are a key thing they’ll be interested in. If your neutrophils are below the range you will be at risk of infection. My consultant advised to treat the first 2 or 3 weeks after discharge from hospital like a lockdown. After that he said you can have visitors but no-one with a cough / cold etc. That suggests it wouldn’t be wise to go into crowded places because you don’t know who has what so you probably just need to be sensible and careful. But blood tests will show how at risk you are. I think the general fatigue might stop you getting back to complete normality for a while anyway. It is an aggressive treatment which effectively causes bone marrow failure so we shouldn’t expect too much of ourselves too soon. At some point you have to have your childhood vaccines and covid vaccines again because they will have been wiped out.

[briggs-family1974gmail-comParticipant]

Thankyou it’s good to have some first hand insights into everything. Such a learning curve at the min 😩
Cycle 4 finishes on Monday then we have no treatment for a week until injections to stimulate stem cells are given for a week and then the harvest at end of March. Cycle 5 is due to begin around 4 April and I think it’s just a waiting game for a bed to become available for the transplant. Apparently if the transplant happens before all 6 cycles finish they pick up remaining after transplant, hoping to finish everything beforehand though then transplant 🤞

[smithsterParticipant]

I had my harvest a few weeks ago and my SCT starts next week. Finished 4 cycles of DVDT in January and my Paraprotein is too low to measure. I still get lots of pain and fatigue but facing SCT with as much optimism as possible since everything the medics have told me in the last 6 months seems to be going to plan.
I hope at age 69 my body will cope. The insights given here are very helpful, and I’m ready for whatever the mephalan does to me.
Thanks all, especially mulberry.

[briggs-family1974gmail-comParticipant]

Hope all is going well with your SCT

[smithsterParticipant]

Back home after 16 days in hospital for SCT. I experienced everything they promised- sickness and fatigue mainly, the other effects relatively mild. Roughest days were 9 to 12 but once the neutrophil numbers started to rise, I felt a bit better.
After 2 days at home I still have sick sensation with suppressed appetite and of course very tired.
Back to clinic for bloods etc in a few days

[anne1Participant]

Had my first meeting re SCT and was surprised to find out the average time for remission is 2 years. Was expecting a longer duration. Does anyone have any thoughts?

[rabbitParticipant]

Hi Anne1,

I know that hearing things like this can be depressing.

Here are a few thoughts:

1. “Average”

2 years sounds like the median time in remission. That means that it is less than that for 50% of patients, and more for the other 50%.

In the second group there are patients who stay in remission for far more than 10 years.

The word average in day to day life is the total of all the remission times of a group divided by the number in the group (this is otherwise known as the mean). That is more than the median.

MM researchers use medians in measuring how effective a treatment is so that they can assess things when it has stopped working for half the patients. If they used the mean, they would have to wait much longer, for it to fail for the very last patient. That would delay the roll out of a new treatment: bad for patients, bad for pharmaceutical firms.

2. Further treatments

When one falls out of remission, there are many other treatments out there. Sometimes these are more effective for the patient than the first “line” (the initial chemo followed by the SCT).

3. Future treatments

MM treatments have improved enormously in recent years, and there are more entire types of treatments on their way: CAR T, bispecific antibodies, dendritic vaccines, CELMODS…

Even if someone only stays in remission for a couple of years after the SCT, that and the other treatments already approved can buy time for these new treatments to be rolled out in the UK (CAR T and bispecific antibody treatments have already been approved in some other countries).

Regards
Rabbit

[anne1Participant]

Hi Rabbit
Thank you for your reply. I appreciate you taking the time to post your comments as they’ve helped me rationalise a bit more about SCT.

I believe US are about to begin CAR T human trials very soon but didn’t know other countries have approved it for Myleoma. I wonder where we are in having it approved (although I live in Scotland so might be different from other parts of U.K.). If it’s successful for other patients in other parts of the world, let’s hope it’s available soon here. Haven’t heard of the other three emerging treatments you mentioned but intend to find out.

Thanks again
Anne

[rabbitParticipant]

Hi Anne,

The situation is better than that.

CAR-T and bispecific antibody treatments have already been approved in the US and the EU.

Going off topic, I could curse Brexit. The UK regulator is taking its time to approve new MM treatments.

My reading of things is that CELMoDs are further off, with dendritic vaccines way off on the horizon. I would, of course, welcome being corrected on any of this.

Regards
Rabbit

[anne1Participant]

Hi Rabbit

So is the U.K. regulator’s delay related to Brexit? If so, then is there any sort of protest, petition, campaign you know of I could participate in? Or is the delay to do with something else? If other myleoma patients in other countries are benefiting from new treatments, we in U.K. must have the same opportunities too, surely. I’m curious to know how successful CAR T has been for others.

As you can probably tell, I’m newly diagnosed and new to the forum so apologies if the above has been previously discussed.

Thanks
Anne

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