[greg777Participant]

Hi Susie,

Really sorry to hear your news, I really hope it starts to get better soon.

The only thing I can offer is whether some of the depression and panic attacks are down to prednisolone? I am not saying the emotions are not real, just that when I was on pred, everything was much more intense – steroids are known to do that and I think you said in an earlier post that you were on a high dose? Things did get better when I came off it.

You could also maybe ask your consultant about psychological support? I did, and it really helped me out.

All the best,

Greg

 

[greg777Participant]

Hi Dee,

An allo transplant is a donor transplant, the exact same process as an auto except it is someone else’s cells going back in. The thought process is the donor’s stem cells might do a better job of attacking the myeloma cells. But it is considered higher risk as there are more potential complications.

I did mine more than 18 months ago so I honestly don’t know what the current thinking is about them, but worth asking your team about them as I think they are still considered in younger myeloma patients.

Recovery time for the auto was about 3 months, for the allo a lot longer – about 9 months, but it can vary from person to person. The process is remarkably the same, the difference is the after-effects are greater with an allo.

Hope this helps,

Greg

 

[greg777Participant]

Hi Dee,

I was 36 when diagnosed two years ago – not nice to be in the “extremely rare” group as my doctor put it. I had VCD, followed by tandem stem cell transplant (auto, then an allo 3 months later). Please feel free to ask any questions you may have.

All the best,

Greg

[greg777Participant]

Hi Claire,

sorry I can’t remember my counts between cycles but I can confirm the chemo is harsher in prep for SCT, the logic being you really want to blast those myeloma cells before you put the baby cells back in. Melphalan was the worst for me, it made me badly sick but only for 1-2 days. It also makes your hair fall out. It is tough for a while but it is short-lived. Within a couple of months, the body starts to recover and it all becomes a distant memory.

Wishing you the very best,

Greg

[greg777Participant]

Hi Helen,

It can depend on a number of factors – whether there are any complications (e.g. Unexpected infection), bed space, personal preferences (I asked to put my admission date back a week to avoid by birthday). I think mine was about 3-4 weeks – I think anything up to 6 weeks is normal.

Wishing you all the very best,

Greg

[greg777Participant]

Hi Adrian,

Many thanks for your note, it was a very kind thing to say thank you. I think you are right that there is something unique about the patient’s experience that only a patient can understand, although sometimes I do wonder if it is actually harder to be a loved one, because a cancer diagnosis happens to you too, but not physically, which must be hard to deal with emotionally.

If it is any comfort, I have a massive issue with the sight of blood. I absolutely hate it which was a bit of bad luck to get a blood cancer, but it is what it is. The Hickman line will probably make it easier for a while because you won’t need a needle (unless the line gets blocked which is intensely frustrating!) I bet you’ll be amazed what you can force yourself to do – yes, it is absolutely horrible – no-one would choose to do it – but you can definitely do this. I am living proof of that. I had the best part of 2 years going to the hospital every week – often every day – over 3 months of that as an inpatient – but now I am only on 3 monthly check-ups and other than taking penicillin twice a day, there is no visual reminder that anything is wrong. The life I thought I would never get back, came back. Ok, so it is not exactly the same as before, but it is not the hell it is when in the middle of treatment. All I can say is that I wish you all the very best with what you have ahead – I can’t lie and say it is going to be pleasant – but just remember why you are doing it – and it won’t be forever. You can definitely do this.

Wishing you all the very best,

Greg

[greg777Participant]

Hi Adrian,

I had a PICC line in my arm, I am guessing yours is going into your chest? I don’t know if the process is different or not. When it went in, I found it painless but a bit strange. The people doing it are very experienced.

Once it is in, the key thing is keeping it clear of infection. It sound be changed once a week and try to get a good shower cover for it (might be harder with it being in your chest but ask the hospital – they should have some good advice)

It feels a bit weird for a while but you get used to it. I had mine in for 14 months and after a couple of months I honestly didn’t notice it at all – in fact a part of me was a bit sad to see it go when it did because in a way it ended up feeling like a part of me! And it is completely painless and quick when it does come out.

Hope this helps in some way. Best of luck!

Greg

[greg777Participant]

Hi Peggy, I agree with Susie, definitely best to get it checked out.

Is your husband taking dexamethasone? When on that, I often started sentences and then forgot why I did, so it could be that, but it wasn’t as bad as you describe, so definitely best getting it checked out.

Wishing you all the best,

Greg

[greg777Participant]

Hi Susie,

I reckon everyone reacts differently although my guess is most people would say 6 weeks is still pretty early on in the recovery phase, especially if you have been re-admitted which is bound to knock you down a bit. In my experience, it was about 3 months before I felt like myself again and I had a pretty smooth run. I wouldn’t be expecting too much in the first 100 days but now you are 6 weeks in every day will be a step in the right direction to getting your strength back so just keep plugging away.

All the best,

Greg

[greg777Participant]

Hi Sabs,

Definitely push it with the medical team as this wasn’t my experience on a similar regime (but I guess everyone is different). They should have nutritionalists at the hospital as well – they can provide high calorie shakes to keep weight up. Keep trying all you can to get fluids in – up to 3l a day is really important especially when taking chemo.

Hoping you manage to get some progress soon,

Greg

 

[greg777Participant]

Hi Susie,

i’m sorry to hear about your neuts and the vomiting. Any concerns at all, please share them with your medical team as they will know what to do. Treatment is rubbish but keep hanging in there, hopefully it is doing the trick of putting the myeloma back in its box. And things do go back to normal once treatment ends. I am 18 months post-transplant and to all intents and purposes my health is pretty good at the moment so it can definitely be done.

Hope you enjoy your week off as best you can.

All the best,

Greg

[greg777Participant]

Hi Susie,

i’m doing good thank you. Almost 18 months since my allo transplant. 3 monthly check-ups now. Just trying to keep up to date with developments and helping others out if I can. Treatment is tough whilst you are in the middle of it, but it is surprising what the body can put up with and come out the other side – keep plugging away.

Greg

[greg777Participant]

Hi Susie,

If you search for neutropenia in the search bar, there is a booklet on it – it looks like it only kicks in if the neuts go below 1 so I don’t think it is relevant for you – but maybe worth a read to know what to look at for?

Greg

[greg777Participant]

Hi Susie,

You should follow a clean diet to avoid infection from your food when your neuts get too low – sorry, I can’t remember the thresholds – it normally kicks in after SCT but is good advice if you are getting towards being neutropenic – a lot of it is common sense – washing fruit and veg, not going past sell-by dates, avoiding shellfish – that sort of thing. Myeloma UK will probably have a brochure on it somewhere. But check with your medical team first, as I can’t remember when the advice is for it to kick in – but they will know.

Greg

[greg777Participant]

Hi Susie,

Neuts at 1.5 are getting on the low side, but in my experience changes to plans only take hold if it goes below 1.0 – take care of yourself though as you are going to be at greater risk of infection. Did they mention clean diet to you yet?

All the best,

Greg

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