[JetParticipant]

Hi all

I will be going into hospital on 1 August. High dose chemotherapy on 2 Aug and the transplant itself on 3 Aug.

I always ask lots of questions of my consultants and the specialist nurses, so I fully understand the process and what might happen in terms of side effects, but it's always a bit different to hear from people who've been through it. So those of you who've gone through it, I wonder if you would mind giving me the benefit of your experiences with regard to the following questions:

How did you feel while you were in hospital?
How did you feel once you were sent home?
How long before you began to feel more or less ok?

I understand that I will be very vulnerable to infections, so can't eat certain foods, play with my cat, go near anyone with a sniffle or go gadding about in public, even to the supermarket, and that continues until the blood results show the neutrophil element of the white blood cells is back to an acceptable level.

But I've had different responses from different medical staff regarding how I'll actually feel in terms of energy, weakness, appetite, etc.

One nurse gave me the impression that I'd be completely wiped out, have no energy, need to sleep a lot, lose interest in food and not want to see anyone or do anything for quite a few weeks and I imagined feeling as awful as I felt in January prior to diagnosis. Another nurse, when I was having a Zometa infusion the other day, gave me the impression that it could be as mild as I felt after the chemo prior to stem cell collection, which just made me feel a bit more tired than usual.

The latter made me feel a lot less fearful, but I wonder how realistic it is…? I know that everyone reacts differently and when I go through it, that I will have my own experience, but any specifics you could share would be appreciated.

Thanks
Jet

[lorraineyParticipant]

Hi Jet, I had my SCT just over 2yrs ago and being honest I didn't think it was as bad as I was expecting it to be. I live in France and my treatment was first class, I was given lots of preventative meds and I think this helped me alot. The day I went in I was put on a drip immediately to keep me hydrated and started on the mouthwash, it was a new one and they monitored me with it, I had to use it 6 times a day..and I didn't get any ulcers or sore mouth etc at all, it was brilliant! I was given Melphalan the 2nd day and was put on an anti-sickness drip before they gave me it to help with the sickness. The Melphalan only took about half an hour to go in, and within an hour the diarreah (spelling?) started but again they quickly gave me Immodium and other meds to stop it… my advice to you would be to ask for meds as soon as possible to help you. I had my stem cells put in 2 days after the Melphalan and they only took about 20 minutes but the smell was awful! It smelt of tinned tomatoes…I was expecting sweetcorn 😉 lol! I was knocked for six, no energy, no appetite and lack of concentration…reading a magazine/book or watching a dvd etc was enough after a few minutes. I had a tiny spot on my thigh which stupidly I picked at and it ended up infected 🙁 I didn't even think about it, but I was very poorly for a week. I had a big black hole in my leg where the spot was and from my thigh down to my knee it was bright red, swollen and sore 🙁 Not nice at all! Don't pick any spots if you have any 😉 When I left hospital I thought i'd be ok but I was very weak and it took alot to walk from the lift to the car which was just outside the hospital doors…after spending 3 weeks and only walking 3 feet to the bathroom it was a bit of a shock. When I got home I slept alot, still had no appetite and no energy. I tried to get out in the garden a couple of times a day just to have a wander but some days I couldn't manage that. It was very hard and frustrating to have Daren and my kids doing everything, I just wanted to be 'normal' and do the most mundane things which we all take for granted…puting washing in the maachine, making lunch etc but I just couldn't do it. It took me a long time to build back up again, and it's only been the last 6 months where I actually feel 'ok' It's taken alot longer than I expected but as you say and we all know, we are all different and react differently to drugs, treatments etc. Even now I still struggle with energy levels and i'm nowhere near as fast at walking, doing housework etc pre MM but i'm learning to live with it, albeit being very very hard. Sorry to waffle on Jet, I hope i've not worried you in any way, certainly not my intention. I really hope your SCT goes without any hitches and minimal side effects. Take care of yourself love n hugs Lorraine xxx

[DebsParticipant]

Hey Lorraine,
What was the mouthwash called? Need to ask for it NOW!!!
Thanks
Debs x

[JetParticipant]

Hi Lorraine

Thank you so much for sharing your experience. That was exactly the kind of information I was after. You've not waffled on at all. It's very helpful and you've not worried me. It sounds like you had it much more how the first nurse told it, which is what I expected.

For me, it's preferable to hear the worst it could be and maybe not have it so bad, than the other way round.

Good to hear you're more or less ok now.

I too have noticeably less energy than pre-myeloma. If I am very active one day, I usually need a day on the couch the day after. I've mostly accepted that, but am expecting it to be worse immediately after the transplant before returning to how I am now.

Thanks again.

Best wishes for continued well-being
Jet

[MinParticipant]

Hi Jet.
Good luck for the SCT and hope its a walk in the park so to speak. Peter my mm man, had his stem cells given at 9am and was home by 3pm and did all of his recovery at home. Stupid man even cut the lawn when he got home. But no one told him he should not. He had a week of being off his food and very tired where he slept a lot but otherwise he was fine. He spent a lot of time before the SCT getting himself in 'shape' and fit and healthy so the Prof thought he could be just as well at home, returning every other day for blood tests. never needed any medication other than CSSF injections and a small dose of anti biotics for an infection on the site of the canula. (No central line or pick line for him)
My advise would be small amounts of exercise (Peter has 4 crushed vertebra and kidney damage so he could not do anything too strenuous) as if you are fit, and in reasonable health you may recover quicker, as the body will be in tip top condition before they stick the boot in with the melphalan LOL. He was made to suck ice lollies as the melphalan went in in order to prevent mouth problems. He had no mouth problems at all. Might ask you nurse if you need to bring some in? Do not eat or drink any citrus fruit or juice after the melphalan as they warned him he would be sick. He had grapefruit the day of the melphalan for breakfast and spent the next two hours on the big white telephone
MIn

[JetParticipant]

Yeah, me too!
Thanks for asking, Debs. 🙂

[JetParticipant]

Thank you Min.

Your message is also very helpful. It just shows, between Peter and Lorraine, how very different the experience can be.

I've been told they'll give me ice, but I may try and ask for the mouthwash that Lorraine mentioned too. As for not eating grapefruit – no problem there – I don't like them. 🙂 Seriously though, I generally lose my appetite completely the minute I step through the hospital doors, so I'm not expecting to eat loads. But thanks for the advice.

By the way, what are CSSF injections? I've been told I'll be given prophylactic antibiotics, antifungal and antiviral medication, as I had after the chemo prior to the stem cell collection, but no one has mentioned CSSF injections. Are they the same as the GCSF injections that I had the week leading up to stem cell collection?

I'm eating loads of fruit, juicing including wheatgrass and eating well just now, cycling when the weather's ok and will be going camping for a week before going into hospital, so hopefully walking and getting lots of fresh Welsh air to prime me. Not sure I'll be in tip-top condition, but hopefully well enough to deal with it.

Jet x

[DaiCroParticipant]

Hi Jet,

[b][i]'I've had different responses from different medical staff regarding how I'll actually feel in terms of energy, weakness, appetite, etc.

One nurse gave me the impression that I'd be completely wiped out, have no energy, need to sleep a lot, lose interest in food and not want to see anyone or do anything for quite a few weeks and I imagined feeling as awful as I felt in January prior to diagnosis. Another nurse, when I was having a Zometa infusion the other day, gave me the impression that it could be as mild as I felt after the chemo prior to stem cell collection, which just made me feel a bit more tired than usual.'[/i][/b]

From sitting in the day-room on Fletcher Ward (my room was not quite ready) having my Mephalan and sucking on the ice-pops provided by the nursing staff… to leaving for home with a bucketful of meds took 19 days.

For 14 of those days I felt only slightly worse than the description provided by Nurse 'B'… the other 5 days (from day 10 to 15) I felt more like the description given by Nurse 'A'. It did not help that Janet started sniffling during the night of day 3 and was not considered fit to visit until day 18… but in a way that was a blessing because she did not get to see me when I was at my worst.

Even at my worst it was only a matter of total lack of energy and ennui… I did not feel 'ill' in the generally accepted sense.

They will start the 'daily bloods' a couple of days after your Stem Cell's return… when your levels have 'bottomed-out'… looking for/waiting for evidence of the rise in your neutrofils. The day will come when the results come back as 0.1.:-) As long as there are no other underlying problems they will allow you to go home when your reading reaches 0.5. (I was kept in an extra day because my platelets were a tad low).

From my own experience, and from those of my contemporaries, there is nothing to be 'fearful' of. Just accept that there will be a period when you may well feel 'bottomed out' but that this period will pass quickly and it will be just as quickly followed by the time for home recovery and hopefully a long and healthy remission.

Blessings and best wishes.

Dai.

[lorraineyParticipant]

Hi Debs, Jet & everyone

Sorry i've only just come back on and read your posts. The mouthwash I was given is called CAPHOSOL consisting of blue & transparent pippets and you have to mix one of each together. Remember i'm in France so i'm not sure if hospitals in the UK use them. Here's a link to it so you can see what it looks like, or you may have to copy & paste 😉

http://www.caphosol.com/en/

It's a brilliant product and definately worth asking for.

Good luck!

love n hugs Lorraine xxx

[brochoParticipant]

Hi Jet I love your pic , you really suit having no hair it shows what great bones you have ! My sct was 4 years ago and I was petrified going into hospital , like most of us going into the unknown. I had the sickness and diarrhoea but I was lucky not to have too many problems with my mouth or gums . I had absolutely no energy whilst in hospital and for several months afterwards But my sct was only 3 months after a major op to reconstruct my spine and my response to the whole sct naturally took longer than someone who was relatively fit to start with The biggest problem throughout my 5 week stay in hospital was feeling isolated We only live 30 miles from London but it was impossible for most of my family to visit during the week, when I was in my local hospital for 6 weeks there was always someone popping in , work colleagues as well as friends and family So the loneliness made my time in hospital seem much longer Going home was a bit nervy , being aware of the need to be almost sterile but we soon sttled into a realistic routine and realised there was no need to be too paranoid , good basic hygiene covers most of it! Good luck Jet I am sure your positive attitude will help you cope wonderfully and you will be home before you know it! Top tip take your own cup or mug into hospital so you can still enjoy a hot drink that doesnt taste of plastic love Bridget x

[MinParticipant]

Sorry Jet typing error,don't watch the screen oops it was GCSF injections, just to help the stem cells that are being transplanted and make a few more.
ps like the bold bald look it suits you
Min

[clarabellParticipant]

Hi Jet,

Loving your new profile pic it suits you! My Dad is being considered for SCT so I am finding it great picking up all the comments on your question. He has been told its not something to go into lightly as the blast of chemo is likely to make him quite ill for a week, however he is 62 so they are having a meeting to discuss. So far he isn't too sure he would have SCT even if they offer it I think this is due to the picture that has been painted to him giving him the worst case senareo! But I think the doctors have enlighten you on how bad it [u]could[/u] be so you have your eyes wide open. I will happily tell him about the various stories from all our friend on here and see what he thinks.

Wishing you all the best Jet, Clara xxx

[adamsp41Participant]

Hi Jet….I had my SCT in January 2011 and although as you say every transplant effects each individual differently I can relate to some of the side effects of the treatment as mentioned by other patients…my own personal journey with monster melphalan was whilst in hospital being sick and with diarrohea….mouth and gullet infection ( used 2 types of mouthwash 4 times a day)…fatigue and no appetite(was on drips for 10 /11 days)…was in for 18 days in total and as soon as my neutrofils recovered I was allowed home….when home the sick and mouth problems gradually got better( probably 2 weeks)..but again fatigue was a big problem (for me personally as I like to be up and about)…I am now 7 months "down the line" and am part of the myeloma xi trial and taking revlimid on a 21/28 day cycle and again apart from fatigue and itchy skin (rashes) am doing very well… I visited a local myeloma day organised by Myeloma UK after 8 weeks post SCT(the Myeloma UK support team were amazed to see me attending) and found that everybody had a different story… some worse… some better than my own experience which has had it's high's and lows …go in with a positive mind and stay strong and as my nurses kept telling me you WILL get better…my best wishes for the future…Phil

[mhnevillParticipant]

Hi Jet

Though I can't offer anything re SCT, not having had one, I just wanted to say that I will be thinking of you at the beginning of August. I think the fact that basically you are so fit to start with will go well for you.

I also like the new look! As Gloria says, you are lucky to ahve such good bone structure.

I shall look forward to your Blogs when you are thorugh the other side!! They are always so hones and enlightening.

Love.

Mavis

[JetParticipant]

Thanks Bridget, especially for the top tip!
I'll let you all know how I get on, when I'm to it. x

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