[LouiseAParticipant]

Dad (a young and fit 70 year old), was diagnosed with MM in October last year and opted for the Myeloma 11 trial and randomised to CDT. He had an excellent response with his pp levels undetectable after 4 cycles. His only real side effects were cramps and shingles.

And so SCT has begun…..He's now in hospital having had a multi-lead cannula fitted into his groin. Yesterday he had Methalan administered and experienced a flushing sensation all over his body along with tingling down his arms followed by cramp and then severe pain starting from his lower back through to his stomach. He almost passed out! The sensations lasted a few minutes and the nurse stopped pushing the Methalan until these side effects eased. I just wondered if this was a normal response to this treatment as I thought I had read quite a lot about the treatments and wasn't expecting this?

He seems ok now apart from a little nausea and many trips to the loo after all the bags of potassium they are giving him. Stems cells will be re-introduced this afternoon at 3pm. I'm just wondering if there will there be any discomfort with that?

Thanks so much for any advice you can give.

Best wishes,
Louise (feeling a little apprehensive)

[meganjaneParticipant]

Hi Louise,

Everyone has such a different journey it is hard to say what your Dad might experience but if it helps this is a link to what side effects my husband Phil had when he had his stem cells returned:

http://www.myeloma.org.uk/patient-services/discussion-board/treatment/phils-sct-journey/re-phils-sct-journey3/re-phils-sct-journey2/re-phils-sct-journey2/

All of the side effects quickly disappeared when the nurse slowed the rate of the cells going in. 🙂

Good luck to Garry (Dad) and please keep us posted on his progress. Also ask any questions you have and someone will hopefully be able to answer them!

Megan

[LouiseAParticipant]

Thanks Megan. I see that Phil had chest pains when they introduced the cells – hopefully when they re-introduce the cells this afternoon they will keep the flow rate slow enough to avoid too much discomfort.

Will keep you posted on how he gets on.

Louise

[DaiCroParticipant]

Hi Louise,

It took 5 days on the harvester plus 2 injections of Plerixafor (sp) to get 2.1 M of Stem Cells which resulted in my having 14 (fourteen) bags of Stem Cells returned… I have been reliably informed that that was a worlds record. 😉 😎

I must say that while it was a lengthy process over 2 days it was not uncomfortable in any way just boring. Each bag held a small amount of Cells with just as much preservatives… I gather it was these preservatives that kept me on the toilet for a couple of days but no discomfort at all.

Wishing Garry a trouble free SCT… I'm glad he was a fit 70 year old which qualified him where many are turned down… our David (Perkymite) was just the same and more or less sailed through his SCT with just the usual pitfals.

Keep in touch with your Dad's progress.

Best wishes 🙂

Dai.

[tomParticipant]

Hi Louise and you very young and fit Dad 😎

I had CTD and that worked for me in 2009 leading up to SCT in December 2009 and I sit here In remission and Drug Free 😀 and that proves all the bad stuff is worth it 😉
Unlike our Friend Dai I only had three Bags 😛 and was also fitted with the multi in the groin, am sure that way is better than the one in the chest?

your Dad (name?) will not have too much of a problem as they go in but I hope you all like Sweetcorn?

Good Luck to you and your Dad on his road to remission.

Tom Onwards and Upwards xx

[meganjaneParticipant]

Hi Louise,

I hope everything went well this afternoon with minimal side effects for your Dad. 🙂

Megan

[LouiseAParticipant]

Dear Tom, Dai and Megan,

Thanks so much for your reassuring messages. Dad (Garry) is now Day 3 post transplant. In the end he had two bags of stem cells and yes, the smell of sweetcorn/crab sticks was quite pungent! Those fascinating cells went in with minimal side effects (just a slight flushing of the head) and will hopefully start doing their job soon. He's had a couple of days of 'the runs' but this seems to be settling for the moment with the help of medication. The main problem for him is the nausea and difficulty eating which everyone seems to suffer from. He manages a little bit of the hospital food but mainly custard and yoghurt. He particularly dislikes the smell of meat which is strange because he normally loves his meat.

He gets his blood results later today, neutrophils were 3.2 yesterday but we suspect they will be lower today.

All the best,

Louise

[meganjaneParticipant]

Hi Louise,

That is the problem with the stem cell transplant, it has to get worse before it gets better! :-/ I hope your Dad continues to do as well as can be expected and that he turns the corner soon and starts to feel better. Hospital food isn't great when you are feeling well, so when you are feeling poorly it is the last thing you want. If your Dad can carry on with the custard and yoghurt that will be great and you will find his appetite will return when he is feeling better.

Megan

[tomParticipant]

Hi Louise

Well that smell differs with people My Eldest Son said it was a fish and chip smell and when he went home after the visit he phoned me and said he though the was still with me as he was in a Fish and Chip Shop lol.

Good Luck to your dad and remind him to mouth wash as often as he can

Tom Onwards and upwards xx

[tomParticipant]

Hi Louise I have Lol real loud here as in one of my posts I asked your dad's name???:-S and just noticed the post is ::::Garry's SCT journey so I have now concluded your Dad's name is Garry 😛
Gosh am a silly billy lol xxx

[FOXLEYParticipant]

Hi Louise,
I had my transplant at the end of last November so still fresh in my mind. The Christie Hospital where I had mine let your friends bring in ready meals, soups etc that they would store and heat up in their kitchen when asked for. I found that a blessing. I also liked M&S and Sainsbury's jellies. Live yoghurts were forbidden so watch out.
On the other hand my appetite steadily decreased over the 10 days and, as Garry will almost certainly get the runs, he might be glad that he is not eating too much!
Wish him all the best,
Chris

[HelenfwParticipant]

Hello my name is Helen I'm Garry's wife and Louise's mum.

Today is day 4 of his treatment he's feeling very sick and very tired, after visiting him he's been told that our cat maybe a problem for his emmune system when he returns home has anyone experienced this? We have had our cat for 13 years now and it seems as I sit here thinking and typing this bloody Myeloma is trying to take everything.

Sorry for being a whine but any comments would be appreciated (ones that don't say get rid of the cat)

Regards

Helen

[PeterJamesParticipant]

Hi Helen , Garry & Louise
Can't help re the cat only to say many years ago my sister had a cat with leukaemia , so they can get human type diseases
Re Garry's SCT I had mine done on 16th jan this year, in hospital 16 days
The first ten days were not much fun
Went off solid food & coffee from day one
With mouth ulcers & a very dry mouth I found tea very helpful
The neuts will descend to zero , you are then neutropenic , this does not last long , then the start to come back up again
Usually when you get to 1 they start thinking of your release date
I was lucky mine came up very quickly, hence only 16 days in dock
Now been home a month
Bloods were all normal with ten days of homecoming
Dry mouth & lack of taste last some time
Took me some time to get back on solid food
But now back on domestic duties & some business work
Just all be very positive
All the best
Peter (70 ! )

[HelenfwParticipant]

Hi Pete
Thanks for that I'm pleased things are going well for you.
I know Garry has'nt got to zero yet unless when I go today things have changed I'll take him some jelly from M&S maybe he'll fancy that, he's eating custard & soups – he's finding eating difficult.
Think I'll put the cat in a cattery for a while just to make things easier for us when he comes home.
Regards
Helen

[tomParticipant]

Hi Helen and Garry

I was told that I should not have my dog and My Parrot (African Grey) and that was so as not to get in contact with the Poo from either 🙁 so Elaine took over cleaning Sam's Cage but in the end we gave him away to a lovely lady who says we can go and visit anytime we want (Both are well happy) still got dog cos Poo is picked up in a bag, so keep your cat and am sure (but please check) its to keep clear of the litter tray.

Love Tom Onwards and Upwards (dog stays lol)

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