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Carolsymons 10 years, 8 months ago.
Hi everyone,
They let me out early on payroll yesterday. The Nurses (wardens) were really good whilst I was in solitary and for good behaviour plus my cell count improving enough they let me out. As everyone says, it is not easy. Carol. I had 5 days of vomiting, upto 5 times a day, 2 days with a bit of Diarrhea and then the temp spike upto 39.4. The antibiotics also gave me a bit more Diarrhea but overall I managed. I don’t know about the UK but the plan is in 4 weeks I will have Blood, Urine and BMB done and only then will they decide if I need to have a 2nd SCT straight away. As for hair falling out, typically it’s not gone as expected. Where it was vey thin, the hair has stayed near the crown. Where it was thickest, it has fallen out so now I have a sort of ring around my head, I’m having it all removed later because it just looks ridiculous. Still very tired, need to rest fairly often but happy I am out.
Ang, sorry to hear about Graham’s infection, they have to be so cautious because he will be so ill whilst in there and with a severely compromised immunity system, it’s just not worth taking the risk. Best of luck to Graham next week.
Richard
Well done on the SCT. That’s the rough bit over and finished. I hope the following gives you some encouragement ( not that you need it!)
Tomorrow is my one year anniversary since my SCT, I am on the myeloma X1 trial, but I opted for no maintenance drugs. I visit the clinic every three months and today was the day! Since the SCT my pp has always read between 1.8 and 2.3 today it sits at 1.9. No problems there, come back in three months time. It took me some weeks to recover after the SCT, but it wasn’t long before I was walking the dog and getting on with life. We had three holidays last year, two in the UK and a trip to some sunshine. Hey and my hair grew back curly!
Currently I have a dreadful cold which won’t shift, have a course of antibiotics to stop any infections, other than that, I feel good.
Not sure that an immediate second SCT is the norm in the UK, I don’t think so, but we are all different!
Specialist has given the ok to go to the USA, so we’re off end of February. Usual precautions, and take your thermometer! Haha.
Good luck to you Richard, I hope you think the SCT was worthwhile and that your life soon gets back to normal.
To any forum folk about to have SCT treatment, stay with it, at times it’s rough going, but you can do it, as with me your quality of life will improve.
Regards to all
Tony F
Thanks for that Tony, will keep you posted.
Richard
Hi Richard, glad to read your finally home and you continue making good progress!
Keep well
Liz & kev xx
TonyF congratulations on one year sct keep well!
Liz& kev xx
Hi Richard
Glad to hear you are out on parole for good behaviour. Graham is hopefully going in tomorrow for his STC. His chest infection has now improved and a terrible rash that he got on his face has now also improved. We were lucky in a way that the chest infection started the day he was due to go in and not the day after.
Graham bought an electronic drum kit at weekend so now has something to look forward to when he comes home. He may even be able to come home for a couple of days next weekend before going back in again.
He has lots of films loaded onto his computer and lots of DVD’s to take in – he has had an extra week now to prepare for stuff to take in with him and another week to eat nice food before his appetite goes.
Let’s hope Carol is doing well and over the worst bit soon and it is nice to see how good Tony is doing – hope everyone has a very long remission.
Best wishes, Angela
Day +13 dawning! Everything is fine…no more mucositis in my oesophagus so I can drink and eat (not that I really want food). Neutrophils hit 1.2 yesterday after 2 Neupogen shots, so I am no longer neutropenic nor in isolation; still an occasional vomit but diarrhoea has cleared. Luckily I have had no infections, although an anticipated temperature spike last Friday prompted 3 days of IV antibiotics which they have now stopped. Preparations are being made for me to go home ..probably Thursday which will be day +15. The consultant wants to be sure my neutrophils don’t drop too far now the Neupogen shots are finished, platelets till a tad low, Hickman line needs to be ripped out..probably Wednesday and I am done and dusted! Very fatigued though…mind you it is 3:15am while I type this! Be prepared for lots of products being dripped into your line…I have had to have 4 bags of blood, 2 of platelets, immunoglobin, saline (lots) and last night potassium and magnesium. But the SCT according to my experience at least is easily doable. I have a philosophy of life “First dream it, then do it!” You must go in truly believing that it will work and you will have an easy ride. Well it worked for me!
“A life lived in fear is a life half lived.”
Carol
Forgot to mention the “dry mouth” issue also caused by mucositis….it is driving me crazy -oh and yesterday and this morning, my nose is dripping like a tap and my eyes watering. I think it is just my body’s attempt to start to repair the chemo damage, but it is annoying. It is sip,sip,sip endlessly and drip, drip, drip continuously…now you know if I am complaining about such minor side effects it really is time to pack up and go home?!
Carol
Hi Ang, Carol.
Glad to hear you made good progress Carol. I had the same and still do with the dripping nose. My wife won’t let me out without a face mask and that just exasperates the problem. Have to throw away the mask after a few minutes because it’s sodden. It was a couple of days at home before the runny nose improved but I still have some. It’s the tiredness now. I have to have a daily snooze and am in bed before 9:00 pm. As for infusions, I only needed the platelets and I only needed one neutropen shot but everything else was as you.
Ang, I had a gym bike in the room which they encouraged me to use and a lung pump to help keep my lungs fit. If they do the same for Graham he needs to use them. It is going to be tough for him, the isolation was probably the worst for me but time will go. I do hope it goes well for him.
Next stage for me is full bloods, urine and BMB at 28 days – they don’t do 100 days here. I can’t face the BMB yet so I will ask them to defer until 100 days. They are also talking about a tandem transplant if I dont have a very near full remission but I have to mentally prepare myself for that if it happens. On a brighter not I’m walking my daughter to school today so energy levels are not too bad.
Good luck both of you.
Richard
Hi
Graham went to hospital this morning but no beds due to other emergencies coming in so he goes back for 8.45 in the morning and has the Melphalan and then a bed will be available at lunchtime. In a way it has worked out good for him as he has another night in his own bed and SCT still starting tomorrow morning and may be able to come home at weekend for a couple of days prior to going neutropenic.
Angela
That’s good news Ann, I’m surprised they will let him out, the side effects from the Mephalan are not nice. All the best for the next few weeks.
Richard
Hi Angela
I wouldn’t rush to have Graham home just before he goes neutropenic, as they were my worst days with the oesophagus problems and diarrhoea!
I am going home today (day+14) right slap gang into the middle of London traffic with the tube strike.
Having said that it is now nearly 4pm and I have to have 1 hour of platelets before they rip out the Hickman line, then there is always a hold up waiting or the pharmacy to deliver the take home drugs so…….at least we will miss the peak hour mess on the A40!
Carol
It seem that different hospitals have different ways of doing a SCT.
I had my hickman line put in on February 8th and was let home the same day. On February 9th I went back for the Melphalan cocktail, was kept in overnight and received my stemcells back on February 10th. Again, I was allowed to go home that evening.
I didn’t go back into hospital until 16th February when I’d become virtually neutropenic.
Apparently, if they judge a patient to be healthy enough, and they live within easy driving distance of the hospital, they feel it’s emotionally better for him/her not to be in isolation any longer than necessary.
Fortunately, I escaped on 23rd February, almost running out of the hospital to get home!
Hi everyone
Graham has had the Mephalan and kidney flushes today and now home as no bed again. He felt ok to drive home again at 6 pm and now home creating another spreadsheet of tablets as if he keeps ok he can stay home until after the weekend. Tomorrow he goes back at 1pm for the stem cells and then comes home. He will still take his case tomorrow just in case he feels ill but if he feels like he does today then he can come home until next Monday with maybe an occasional visit to hospital for blood tests but can telephone the hospital daily as well. This is brilliant for him if he keeps well for the next couple of days and he has been told that he is one of the youngest and fittest patients they have at the moment and we only live a 35 minute drive away (except in rush hour) so this suits him well and this is just as Michelle has said. I will now have to be extra careful with foods I am giving him and was not expecting this for a couple of weeks.
Hope you got home ok Carol and it will be nice to be in your own bed tonight.
Angela x
Hi Angela
I am home and happy, happy, happy!
Carol
Right, just come back from the hospital, they did blood and they show my white blood cell count is up to 3.2, just another 0.8 to go and I’m in the normal range 🙂 Doctor was very happy, I can relax my diet a bit but still have to continue with mouth wash and a drug to reduce mouth infection – not the dreaded orange ampho stuff fortunately. Although in Germany they do BMB at 28 days post transplant, she agreed with me that it was too early and if she thinks I need it then I will have one at 100 days. When I told her it waqs 100 days in the UK she said they do things properly. She’s going to rely on blood results initially. So I’m a bit of a happy bunny.
Richard
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