[anne1Participant]

Hi gc

Thanks for your reply. It’s helpful to know the process.

I’m glad you had no adverse reactions to the re-vaccinations and I hope you’re feeling well now you’re out the other end of the SCT journey.

Anne

[anne1Participant]

Hi Dave

Thanks for your reply.

I’m looking forward to re-vaccination programme finishing as I’ll feel bit more reasssured going out into the world again with a degree of protection. I don’t know why I wasn’t told a specific time. I can only assume it depends on not getting one vaccine before the previous one has definitely been given🤔. Interestingly, in Scotland, GP surgeries don’t administer any vaccines anymore as it’s the jurisdiction of Health Boards which makes it difficult to get an answer. Popping into my GP surgery would be sooo much easier!

Thanks again.

Anne

[anne1Participant]

Hello

Can anyone tell me how long the re-vaccination programme takes after SCT 100 days please? I know Covid vaccine begins first, then flu, then the other vaccines follow. I am told a ‘few months’ for all vaccinations to be given but hoping someone on the forum might have personal experience of how long it takes, particularly under NHS Scotland scheduling.

Many thanks

Annex

[anne1Participant]

The Myleoma U.K. website has the lines of treatment listed under Understanding Myleoma and Treatments. My consultant, however, told me they don’t use lines of treatment like they once did because there are so many new drugs that they can jump from one to another so I assume they must also stick to the protocols too. I’m about to start KRD but that doesn’t rule out having other second line drugs in future, apparently. I’m interested if anyone else has been told about lines of treatment as being not as rigid as before by consultants. (I live in Scotland so drugs have to be approved by Scottish Consortium rather than NICE, as is the case in England and Wales).

Anne

[anne1Participant]

Hi Rabbit

Pity Elranatamab is fourth line as being the first bispecific, would have good if it had been bumped up the lines of treatment. Maybe in time it might be.

Thanks for your response.

Anne

[anne1Participant]

Hello

Did anyone’s myleoma levels increase between harvesting and SCT? If so, did doctors say what an “acceptable” rise is? Seems I may have to have more chemo to bring level down!

Thanks

Anne

[anne1Participant]

Hi Rabbit

That’s good information and makes sense that newer drugs are further down the lines of treatment. I wonder if that will apply to Cart T and bispecifics when they’re approved, which will be hopefully sooner rather than later.

Thanks for replying

Regards

Anne

[anne1Participant]

Hi Rabbit

Thanks for your reply. I was wondering why first line treatments are first line, second line second and so on. How are they different from each other and what’s the criteria for grouping them into certain lines of treatment. Heard first line are most effective with fewer side effects but not sure this is the case.

Thanks

Anne

[anne1Participant]

Hi Ree2112

Oaf, no wonder you feel the way you do dealing with Myeloma and working full-time! I take my hat off to you. I think it’s easy for us to forget what we’re asking our bodies to do, not least the psychological impact of this illness. I hope you rest whenever you can. Maybe your haematology team can shed some light on why you feel like this, or is it normal to be fed up one year post SCT?

Look after yourself.

Anne x

[anne1Participant]

Hi gc

Thanks for your reply. I’m glad you have benefited from SCT and life is better. It’s reassuring to hear you’ve improved. I know what you mean about being reluctant to take pain relief meds. Walking poles sound a great idea as walking along the seafront would mean the world to me!

Thanks again

Anne x

[anne1Participant]

Hi GC

Hope you’re feeling better today and Paxlovid is keeping covid at bay.

Thank you for replying about SCT, especially when you’ve got a bout of covid.

Yes, I agree about enjoying the little things because they add up to big things!

I also have fractures in my back which limits my mobility too. Have you noticed any improvements? The thought of living with this pain and weakness is devastating. I’m hoping it becomes more bearable as the fractures heal.

Is your fatigue worse since SCT? What do drs say about it? I’ve heard mixed reports of SCTs and can’t deny I’m apprehensive. If you also live in Scotland, I wonder if you had your SCT at QEUH, or if you’re on the East coast, the Edinburgh hospital which I believe is the Western. Think there are only the two transplant hospitals in Scotland.

Take care and remember you’ll soon be enjoying coffee and cake soon!

Annex

[anne1Participant]

I caught covid just over a fortnight ago. I was given the anti- viral Paxlovid. Have to say I was also floored with it so not sure how much of it was to do with the virus or the meds. I had no choice but to rest, rest, rest as wasn’t up to doing anything. I’m still a bit congested with a cough. I’m not sure where I caught it from either as I avoid crowds, unventilated places and people who are knowingly unwell, but I do know it’s rife. I live in Scotland and PHS Scotland’s website has a covid dashboard with up to date statistics. It seems we’re over the peak but numbers are still fairly high. I didn’t get my spring booster as I had to have my stem cell harvest and dr didn’t want any medical interventions interfering with the harvesting. (I’d be interested to know how you’re feeling having had your SCT last year and are you back to a normal(ish) life.)
Hope you’re feeling better.
Annex

[anne1Participant]

Hi

As I understand it (I may be wrong though!), maintenance post SCT is taking a daily tablet called Lenalidomide. It hasn’t always been given so it’s quite new and gives improved remission time. The haematology nurse called it Thalidomide’s ‘big brother’ as it’s the next generation. It still means people who take it are fairly immunosuppressived so have to be careful in terms of busy indoor places or being close to coughs and colds. Not sure if bloods need to be monitored, but let’s face it, can’t go near haematology without blood tests tbh!

Delighted your husband is on Day 22. I’m still going through assessment for eligibility for SCT and full of questions every time having treatment at hospital! The above, therefore is based on my queries rather than experience.

Thanks

Anne

[anne1Participant]

Hi Sammy

I’m also very keen to find out more about the availability of Car-T. As I understand it, it’s not available because of supply issues. Could be something to do with Brexit and the regulatory body changing, but not 100% that’s the only reason.

I believe it’s used in US and some European countries. I’d love to know what the success rate and side effects are. If other people benefit from Car-T, I hope the powers that be approve it for U.K.

Anne

[anne1Participant]

Hi Rabbit

Thank you for your response. I completely get it about being anonymous!

My consultant also mentioned recent drug developments mean SCT is becoming less necessary. The fatigue seems to be a common thread, which isn’t surprising as our bodies have a lot to deal with so little wonder we need have lots of rests!

You’re fortunate you restarted the gym. I’ve already got bone fractures so my exercise choices are limited to probably just walking. Hobbies like Pilates and swimming probably are no longer an option for me. Can’t believe how much myleoma has affected my life. I’m still in process of how to “live with it”, which might come after I’ve learned to accept it. Thinking a local support group may help. If anyone is a member of one, I’d be keen to find out if you find it helpful.

Thanks again Rabbit. Your reply is really useful.

Anne

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