[Anonymous]

Hi my name is Sarah and my husband Henry who is 53 was diagnosed with myeloma in August 2011. The only symptoms he had was feeling tired. He is on his 4th cycle of CTD and has been referred for Stem Cell in the new year. He is doing very well and still going to work when he can. He gets bad headaches and his stomach is very swollen. We have been explained the stem cell procedure but can anyone give me first hand information and advice. I do feel that myeloma has turn our life upside down and it is heartbreaking to see the love of your life suffer. I am trying so hard to be positive and strong for him and the children but at the moment just cant see the wood from the trees. I have read lots of things on the internet some positive and some negative so any advice would be very welcome.

[HelenParticipant]

Hi Sarah
Welcome to this site and sorry you have had to join. I was diagnosed with mm in February this year and am now recovering from SCT.
Do you want info on the stem cell collection or on the high dose chemo and stem cell rescue (SCT)? And which area of the country are you as there are probably local variations.
Helen

[tomParticipant]

Hi Sarah and Henry

Sory you had to join this Band of folk, but you have done the correct thingthe folk on here are a great help with words of comfort, advice and of course the well used "Cyber Hug"

I had 5 cycles of CTD leading up to my Transplant in Dec 2009.

The SCT was Ok, Not a walk in the park but OK, I found all the treatment Pain Free (apart from the growth injections and that only lasted three days)

I went on Sick on my Fourth cycle of CTD and was off for a year, am now back at work (light duty's doing 40 hours a week) am sure I could not go back to my old Job as its heavy and hard work 🙁

Good Luck on the MM Journy and just take one day at a time it will seem a long hard slog but as you know it can and will be done 😎

Love

Tom "Onwards and Upwards" xxx

[PerkymiteParticipant]

Hi Sarah, Welcome(?).

My first piece of advice is to stop looking on the internet! A lot of the information is out of date and the treatment of Myeloma has moved on since most of it was put up. Two sites worth investigating are this one; it has a host of information on it and is up to date and specific to Myeloma, the other one I would recommend is MacMillan that has a Myeloma section but is not targeted specifically at Myeloma.

The stem cell process is that they collect stem cells from Henry, 2,000,000 is the minimum required. The collection process is painless and similar to giving blood. Prior to the collection Henry will have GCFS (this may be the wrong letters) injections to stimulate the manufacture of stem cells in his bone marrow. You can get a lot of bone pain at this stage; personally I found a hot water bottle placed on the pain did help. It took me two goes to get 2 mil of the little blighters but most I am told do it in one go.

The stem Cell transplant can be different depending on the local Consultants and how fit you are. For my transplant I was in hospital for 4 weeks. After a series of tests to ensure that all parts of my body were working ok (I am 68 and at the upper limit for SCT) I was given Melphlan which is a very strong drug that kills all fast moving cells in your body, hair cells (so you temporarily lose your hair ? mine came back dark and curly, I had mousey light brown hair). The stomach and throat cells are also affected and your stem cells. Then you are then given back your stem cells that have been kept in deep freeze. All of this is pain free, however following it you can get a very bad throat, have the runs (Dai, who you will meet on this site, holds the record for the quickest run to the toilet I think) and sickness. This does not last long a few days. Then it is a waiting game until your White Blood Cells, platelets, Neutrophils (the body?s defence mechanism) and other blood elements are rebuilt by your returned stem cells. As I say it can be different at each hospital but this is the basic system.

Following Henry?s STC he needs to stay away from anybody with a cold etc etc… as his body slowly rebuilds his immune system and he will get stronger as the days go by.

I hope this is of some help if you have any questions please ask.

Kindest regards ? Vasbyte

David

[Anonymous]

thank you so much for your reply it was very informative and yes i will stop looking on the internet. Just one question following the STC how long is the recovery from home as im sure my husband will think he can go back to work! and thereafter I presume its regular check ups? thank you again kind regards sarah

[Anonymous]

Hi
I think David has answered all my queries about STC. we live in milton keynes but the STC is going to be carried out at Oxford Hospital. Do you know if there are any provisions for partners to stay in hospital whilst the STC is taking place? thank you again for your advice it is a great comfort.

Regards

sarah

[Anonymous]

thank you Tom for your kind words, and yes onwards and upwards! It took me 10 years to find Henry and we made a pact to grow old together and we are sticking to that no matter what!

kind regards
sarah

[PerkymiteParticipant]

Sorry about this answer Sarah, but "how long is a piece of string?" :-/ . We are all different and as such some take longer than others.

Personally I would not let anyone near the house for the first 4 weeks, my wife and I had a Christmas on our own ( I came out of the hospital on 15th Dec 2010) the first time in 18 years ? no children or grandchildren but the good news is that my taste buds (they go during the SCT) returned Christmas morning and I could at last taste food.

During the cold spell, January/February, we had an outside water pipe burst and I got out there in parker, scarf and hat to fix it!! He is young and I would think if he is reasonably fit he will probably be ok to go to work after a month, on light duties, but the best person to advise you on this is probably one of the younger people, like Tom (someone else you will meet on this site).

Yes, it is regular check ups after that, mine are every 3 months. They take a blood sample and see how your body is doing.

Kindest regards ? vasbyte

David

[DebsParticipant]

HI Sarah,

Sorry to hear about Henry….rubbish news and I'm not surprised that it is hard for you at the moment. Life does get easier once you have had time for the news to sink in, and you learn coping mechanisms.

I had my SCT in July..I am 36. I have to say that I think one month post transplant is optimistic, but it really does vary patient to patient….and I'm not sure it is age related. I am 3 months post transplant and still need to sleep in the day once or twice a week (although touch wood I may be moving past that at this precise moment!). I spent the first month sleeping quite a lot, and the second month having one sleep every day. Month three saw things calming a little and not needing a sleep every day. But I can't imagine having gone back to work at that point….sorry if that isn't what you want to hear. But also, perhaps because I am a stay at home mum, I didn't need to worry about it and so didn't try it.

The SCT isn't nice, but I have forgotten half the facts about it already (a bit like childbirth!), and like you, hope to live long and grow old(er!) with my husband!! Got too much to see with our kiddies too!

If you want more detail, feel free to drop me an email at gascoyne2@virginmedia.com or I do have a blog if you want to see what things were like (though I warn, that I didn't hold back much so it may be hard going and cause a few tears!)…that is http://www.wordpress.com/debsjourneywith myeloma

With all my thoughts
Debs x

[tomParticipant]

Hi Sarah

You are more than welcome and am sure what with the treatment getting better they are thinking of downgrading it from Terminal to severe so am happy with that 😎

I see you ask about work? well Henry I was told that I had to stay off work till my (think) my 100 day check up, then I was told I should stay off work (mine is heavy duty work) as it will be bad for me BUT I went back after one year off (May 2009/2010) and to this day still on Light dutie's.

As for the check up's after my SCT I was having them Weekly for about two months then fornightly/monthly am now on three monthly check up's but have a Zometa Infusion every four weeks 😀

I hope none of this has put you off but as Deb's said The SCT isn't nice, but I have forgotten half the facts about it already (a bit like childbirth!), and its soon forgot (lord knows how you ladies can forget that :-0

Love and Hugs ((()))

Tom "Onwards and Upwards" xxxx

[HelenParticipant]

Hi Sarah and Henry
As you can see we are all different, i had a good stem cell collection, loads of cells but got lots of bone pain with it and it took a few weeks to feel fully well after it. I was working until that point though the RCD chemo made me very tired. I've been off sick since and seem to have had a rough ride with the SCT, developed colitis which is resolving now though still have lots of side effects and tiredness ( I won't bore you with the details here unless anyone else is in or has been in the same boat)
I could not imagine going back to work yet, though I do miss it- I still can't stay awake for a whole day:-) I'm 57 and was happily working towards my retirement and a life of travelling, ( I've not had my gap year yet!!):-) when this happened , so i'm hoping that this is just a year out ( not the gap year I was planning) and I can pick up where I left off soon. Though I'm not expecting to be allowed back to work until Christmas.
Some places do have visitor suites -you would need to ask- unless someone else on here can help
Hope this helps
Helen

[brochoParticipant]

Hi Sarah I would like to add my welcome too. You have been lots of good info about sct so far and I am sure you will have more specific questions nearer the time. You have probably realised myeloma is a very individual disease and as we all react differently its hard to predict each persons response The one thing that is the same for most of us is to rest when your body needs to , there are no chores that wont wait for another day !! It can take some people several months before they have enough energy to return to work but others need much less time It sounds as if Henry was lucky in being diagnosed before myeloma caused any bone damage which is good At the moment your lives feel totally dominated by mm but it does get easier and you find things become more normal and much less scary Good luck Henry with your treatment best wishes Bridget

[eveParticipant]

Hi Sarah
Bridget has just given you some very sound advice,so my advice to you is listen to what has been said.Apart from that welcome to your journey as a carer,ask away about anything you are not sure about,even if we cannot help you,you will have the support of everyone on this site.
Hi Bridget good to see you are posting again. Eve

[Anonymous]

Hi Debs
Thank you for your post. I tried your blog but it came up with page not found! I would be interested in reading it. Could you let me know how to access it.
many thanks
sarah

[Anonymous]

Thank you all for your messages. It means a lot and you dont feel so alone. Henry's referral came through and he is diagnosed with IgA Kappa Myeloma. The letter listed alot of results and talked about light chains and that he had a few small lesions on his skull. He is off to the hospital tomorrow for his parmidinate drip (might have spelt that wrong!) and has his first appointment at churchill hospital in oxford for SCT. He is on his dexamthasone this week so feels a bit more lively. I bought him some travel sickness wrist bands and that stopped the hiccups he used to get for hours on ends. He is slow and sometimes his legs dont feel his own and he has collapsed once when he had a hot bath. The Thalidomide does give him tingling and numbness but his consultant is monitoring this. Oh yes he has had a urine infection too. But all in all he seems to be ok (This week has been good). He got his medically exempt card for prescriptions this week so he was well chuffed as he is on asthma medication. Does anyone know if you are entitled to a Blue Badge? His work dont have a sick policy so when he goes into hospital for SCT it will be just statutory sick pay 🙁 My work seem more caring than his! Ive learnt so much by reading on this forum and am very grateful. Thank you. Sarah xx

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