[shadyladyParticipant]

Hi

My husband starts his SCT on Monday..prime…then harvest a week later.  We are excited and apprehensive….a strange feeling.

Has anyone on here had their’s done at Southampton.  I’ve read up on the procedure,  but nothing like personal experience to smooth the way forward…..although I do realise that no two Myeloma patients ever have the exact same experiences.

Im wanting to get organised, my son is not well with Crohn’s and I take him to college.  It’s all been quite busy since last September with all the appointments, etc.

Thank you

 

Sonia

[janwParticipant]

Hi Sonia

It’s good news that your husband’s chemotherapy treatment has worked and he is now into the procedure for an sct. I am sorry that no one has replied to your post so far. There are a quite number of people on this forum who have undergone an sct, but I don’t know if any one has had theirs done at Southampton hospital. Hopefully you will get some more replies to your enquiry.

My sct was just over five years ago and I am currently undergoing chemo with a view to progressing onto a second sct later this year. From a practical point of view, I remember not having sufficient pjs because of loose bowel problems and soiling quite a few clothes! I also had to have some liners for my pants to help. Passing the time at hospital can be boring and requires some different activities to keep you occupied such as books, newspapers, tv, phone, DVDs and laptop but the electrical items depends on the facilities and network connections. I was not allowed a fan during pthe hot summer months. If there’s a fridge then some cold drinks, yogurt and ice lollies are welcome treats together with any snacks such as biscuits, squash and sweets for your bedside table. However,
I had nausea for over 12 days and couldn’t eat or drink anything, so I was constantly on a drip. My mouth was so sore and sometimes dry that eating was painful. Some patients take in their own duvets/throws, but you need to check with the hospital about their washing regulations.

I hope all goes ok for your husband and he recovers well.

Regards Jan

• This reply was modified 8 years, 7 months ago by  janw.

[louishenryParticipant]

<p style=”text-align: left;”>Hi Sonia, I had my stem cell harvest and transplant at Southampton a few months ago and have got nothing but praise and thanks for all the staff there. Harvest was tedious but not painful at all. The sickness and diarrhoea and sore mouth are no fun when you have the transplant but in my case only lasted a little over a week. I was out in under three weeks and now two months later am almost back to normal. So far so good, I will know next month after the bone marrow biopsy how successful it has all been but I  am hoping for a good long remission. Good luck to your husband, he’s in good hands</p>
<p style=”text-align: left;”>Louis</p>

[annlynnParticipant]

hy jan. hope its ok to ask how do you feel approaching a second sct i only had my first one august 2014 i have got stem cells harvested for another one if thats the ro a d i have to go i just cant imagine doing all again its like having that first child and forgeting how hard it was then we hen. your pregnant again. you start to remember how difficult it was xxxx

[janwParticipant]

Hi, You are right in that I find a second sct quite a daunting prospect especially as I found the first one so exhausting and it took me a good six months to recover sufficient to venture outside the house. Obviously the procedure was not helped by the fact that I couldn’t get my nausea under control with the four cycles of cdt as well as during time in hospital for the stem cell even with three different anti nausea drugs plus driver being pumped into me. Overall, I lost almost five stone in weight from April to September 2010 and felt very weak as a result. I also didn’t have much time for my body to recover from the end of cdt treatment until sct i.e. four weeks. Usually, it appears 8 to 10 weeks are given for recovery and to organise treatment of the sct.

When my consultant first mentioned a possible second sct when I started to relapse, my initial reaction was no because of how I felt in hospital and for months afterwards. However, after achieving just over five years of drug free remission since my first sct, then apparently I have good prospects of achieving a further 2 or 3 years, or more from a second sct according to the research on the myeloma X trial. I tend to react to the side effects from drugs, therefore the prospects of some further years without any drugs is very appealing. If I actually get to undertaking a second sct depending on the Velcade results, then as you say just like pregnancy experience I need to think positive and think it’s all over in a short period and the benefits might be great. Perhaps a second sct might be a lot easier, just like my second pregnancy and birth? I can only hope.

Jan

[shadyladyParticipant]

Thank you all so much for taking the time to reply with details of experiences and some timely advice.  🙂
Jan…we have been out today for extra pjs!! I hope your current therapy goes well ready for your sct later in the year.
Louisehenry….. I think I read about your experience a few weeks ago on the forum.  (You’re from the IOW?) I showed my husband your reply regarding your time at Southampton…..good to know he said.
He has done quite well on all the medication since last May, having CTD, then going from Thalidomide to Velcade.  His main problem has been constipation.  He also has a fractured pelvis and is on morphine.  He’s not doing so bad giving that he’ll be 70 this year.  Thankfully he has retired and can go with the flow.

[steverowleyParticipant]

Hi Sonia,

Had my stem cell at Southampton in 2012. Spent three weeks in isolation and was then able to return home.

Not a very pleasant experience with all the side effects such as diarrhoea, ulcerated mouth and throat, nausea.

After returning home it took about 6 months for me to fully recover.

I am now 70 and unfortunately no longer in remission, so am undergoing 6 months of new treatment including chemo and weekly injections. Despite my unpleasant first experience of SCT, I am considering having a second transplant and have requested a referral to discuss the possibilities. I have sufficient frozen cells from my initial harvesting.

The staff at Southampton are fantastic and I couldn’t have had better care and attention. Your husband will be in very safe hands.

Onwards and upwards and keep positive.

Kind regards,

Steve.

 

 

 

 

[shadyladyParticipant]

Hi Steve

Your reply came straight to my phone as we were sitting in C7 having the chemo today.  It’s good to see someone on here age 70 going for an SCT….I see you come under Portsmouth QA too.

Today went well, but we take your point about the side effects, which seem a common reaction.  As you say the staff in Southampton are great, nothing too much trouble and a friendly bunch.

Do hope your referral appointment goes well.

Thanks again

Sonia

[steverowleyParticipant]

Hi Sonia,

Many thanks for your reply.

My consultant at Southampton was Dr Orchard and at QA is Dr Mary. They are both extremely knowledgeable and sympathetic to our needs.

I attend QA for monthly consultations with Dr Mary, along with three monthly visits for Pamidronate infusions to strengthen my bones.

In 2012 the Myeloma attacked my spine and caused it to multi fracture, so much so that it prolapsed and over a short period of time I’d lost 7 inches in height.

Unfortunately nothing could be done to rectify the situation, as my spine had fused together, with no effective discs left in place. As a result, along with the Pemidronate, I have to take numerous pain killers, to make my mobility etc a lot more tolerable.

No I don’t use a stick or walking aid and still drive the car, with no problem. Can’t stand for very long though and find that comfy chairs are a blessing!

Ever Onwards AND Upwards.

Stay positive, both of you, do what the consultants tell you and all will be fine.

With all good wishes,

Steve.

 

 

[shadyladyParticipant]

Hi Steve

Under Dr Orchard at Southampton and Dr James at Portsmouth QA.  Strange too that my husband developed pain and diagnosed recently as micro insufficiency fractures in the pelvic area.  He is on morphine tablets as sitting became almost impossible.

Hubby is very positive about it all.  Thank you for your good wishes.  Nice to reach others out there in this weird world of MM.

Regards  Sonia

[VickiParticipant]

Hi Sonia

Its vicki here I see your friend request but I don’t know how to accept it. Happy to but it doesn’t seem to work on my profile. With all good wishes for the SCT. be positive thats so important. I know how difficult it is for you as the supporter too. This website is great to talk, and seek advice and information. The nurses are great when you have something to check up on.

[bernardParticipant]

SCT at aged 70? Fantastic news. Gives hope to us younger ones who have undergone SCT already at a younger age. There is still treatment possibilities as you get older. Good luck to you all.

[shadyladyParticipant]

Hi,

Priming and harvesting all done last week.  Very tiring but a great bunch of people at Southampton.   SCT due any time around 6th March.  Line being put in 3rd March.

Thanks to to all the advice and relating of experiences….good or bad…..it has helped in understanding all the procedures.   😊

Yes Bernard, it is a great age.  Thanks for your good wishes.

I’ll keep you all updated.  😷

 

 

 

 

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