[rob47Participant]

Hi Adrian,

I had my harvest at the start of May and lost most of my hair about two and half weeks after harvesting which was a side effect of the cyclophosphomide chemo drug administered at the start of the harvesting. I was fortunate that I did not have other side effects on the cyclophosphamide, but the GCSF injections to help generate the stem cells for harvest caused a lot of bone pain in the lower back. I was doing OK for the first week of harvesting then a day and a half before the harvest  the bone pain came on and got rapidly worse. We all have different reactions so all I would advise is if something is not right call your CNS nurse or the hospital helpline number you should be given (I needed this as I was at my worst on bank holiday Monday!)

I had not had any loss from the Velcade as part of the VTD cycles though I expect to lose the rest of it in the next few weeks as I am hopefully going in for the actual transplant on Monday.

All the best with your treatment.

Rob

 

[adriwest1Participant]

Thanks Rob- really great info on what’s coming up, really glad to hear your ready for the transplant soon. have you had your Hickman line put it yet? Do you have to wait for a bed before you can start?

thanks

regards

Adrian

 

[rob47Participant]

Hi Adrian,

Fingers crossed going in to UCLH on Monday morning will have a Picc line put in on the day and then the mephalan chemo. They have  a hotel building next doot which you initially stay at. The idea as I understand it is you stay there and visit the hospital each day for bloods, obs and medication. At some point when you are at your lowest immunity or get a temperature, infection or other medical reaction you are moved back  into an isolated room within the hospital. I have been told I will probably hit my lowest point at 5-7 days. If things go well I’ve been told I should be home in 3-4 weeks on average.

All the best

Rob

[adriwest1Participant]

Hi Rob, I hope it all goes to plan on Monday and you don’t have any relays- it would be great to keep in contact.

all the best

adrian

 

[annlynnParticipant]

hy adrian hope all goes well i have to ring in morning to confirm bed but ive got a cough so blood test first fingers crossed. annlynn

[annlynnParticipant]

sorry that was for rob annlynn

[adriwest1Participant]

No worries Ann, I hope everything goes well.

adrian

[richard48Participant]

Morning everyone – hope we are all doing well.

Rob/Adrian – hope the SCT has gone to plan. What day are are you on? I’m on day 16 and finally got home yesterday. Tough couple of weeks and still a long way to go but I’ve stayed positive throughout even on the dark days of nausea and a very sore throat. Whatever stage/day you’re on guys stay strong as it does pass and you’ll soon be home if you’re not already. I felt the hardest bit was the anticipation and waiting after the the actual transplant. Sadly I was willing myself to get ill so I then knew I’d start to get better at some point. Hopefully recovery will be quicker now being away from hospital although my first check is in a couple of days. My legs are really stiff today – the 500 yard walk to the car yesterday after discharge was the hardest I’ve ever done but it’s not going to stop me doing more today.

Best wishes to you all.

Richard

[adriwest1Participant]

Hi Richard, God that happened all very quickly for you, you made it and home- is there a sense of relief?  Not having mine until August so more time to think, did you try ice for the mouth?  Really pleased you are still positive, what’s your plan for the next few weeks?

wishing you the best

adrian

[richard48Participant]

Hi Adrian. I’m so glad it has happened and got home just after 2 weeks. I’ve only been back 2 days but I feel so much better already. I’ve slept so well both at night and during the day – more than I’ve done in years! I clearly need it and I’m sure it’s helping me repair inside. I think the nice weather helps even though I’m staying in the shade and having to make sure I put on factor 50 lotion on my new designer haircut (bald). I didn’t lose everything but I had a few big patches and it really thinned so I decided to shave it all off yesterday. It’s not too bad for me as I’ve always kept my hair short anyway. That started on day 12/13 – 3 weeks after my cyclophosphamide.

Why have they decided to put you off until August or did you decide to delay things? I had lots of ice pops by the way with Calippos. I had loads on the day of the melphalam – my first day in hospital or day -1. I had quite a few throughput my time in hospital especially when I had mucositus or when I was feeling nauseous. It’s hard to say how effective the ice pops are when you’re having the melphalam and if it does reduce the mucositus but I would definitely recommend having as many as you can as I’d hate to think if I hadn’t and if it had made my mucositus any worse. It was very painful but manageable with the mouth washes I was given and still have. It was hard to eat but it was a case of eating very slowly with very small amounts – certainly something I don’t normally do. I was determined to eat everyday and managed to just about. I felt that if I ate it would give me energy to repair the body and aid my recovery more quicker so I could get out.

I did a lot of mindfulness from an app for my phone before I went in to hospital and I think that really helped me. Some people don’t really believe in this process or struggle to do it but I would recommend it to anyone going through this process or at least to give it a try. I struggled to do it in hospital at times as closing my eyes and focusing on things when nauseous was very hard but luckily I had done enough before I went in to enable me to stay focused and positive even during the hard times. I kept saying in my head – I won’t be beaten. I even told that to the consultant quite a few times when he came round.

So the next few weeks are going to include a lot of rest – try and sleep as long as I can at night and if I need to in the day. I also want to build up my strength. I was quite fit before I went in but sitting around in a hospital for over two weeks with no real movement has meant I’ve lost a lot of my strength and fitness. I did another walk yesterday – half a mile or not even that and my legs again feel like I’ve run a marathon today but I’m not going to give up and we’re off out for another walk in a bit. I won’t have a lot of contact with people for a bit too and I can’t go in to crowded confined areas – no shopping or going to the pub – but I can handle that – I’ll just have to do some more mindfulness in place of these activities.  I’m back in the day unit tomorrow for blood tests etc and then on Wednesday I’m meeting the consultant, so I imagine this will be happening weekly at first just so they can keep an eye on me.

Anyway, sorry for the ramble. I hope it has helped in some way. It’s hard but it can be done and it’s about staying strong.

Best wishes,

Richard

[adriwest1Participant]

Hi Richard, you are not rambling this is fantastic feedback- I really appreciate it. How are you feeling now?

[rob47Participant]

Hi all,

Sorry for not posting for a few weeks been holed up in UCLH having my SCT. I was discharged on Wednesday evening (day+14).Interesting experience walking at snails pace  out of the hospital from a air conditioned room into  furnace. It was a tough ride once I went downhill around day 7 and was pretty rough for 4-5 days but once the neutrophils started creeping up (at day 11 onwards) I started feeling  much better.

Whilst we will all be impacted by the side effects in slightly different ways (my usual suspect my lower back played up upon a vomiting spasm, thankfully X ray and MRI suggest it was muscle and nerve rather than further bone damage) with a positive frame of mind this is doable.

Got my follow up next month at UCLH next month but bloods are being monitored locally

Good luck to those with forthcoming SCT’s and undergoing treatment.

All the best Rob

[pamnParticipant]

Hi Rob I hope now being home you are steadily feeling stronger. You sound to have a strong and positive attitude and got through the worst period despite feeling grim for a few days. I’m due to have my SCT on July 11th and any advice and positive feedback is really helpful and reassuring . Good luck and thanks. Pam

[richard48Participant]

Hi All,

Adrian – I’m feeling a lot better thanks. I think being at home makes the recovery a lot quicker despite the side effects still kicking in. The nausea and tiredness is up and down  but thankfully much less than when I first came out of hospital. My ears pop or need popping every so often and today my left ear feels like it’s all blocked up/full of cotton wool.  I used to get this when I was having the velcade and the consultant said this was normal. I still get neuropathy mainly in my left foot but again I used to get this on my original cycles of medication. My  appetite is still very low but I’m not too bothered about that as at least I’ve lost all the weight I put on from the steroids I previously took. I was in the day clinic on a Tuesday- routine bloods. All levels good/to be expected. I just have to keep drinking lots of water as the creatine levels in my kidneys are a little high. My consultant was happy and I don’t see him until the middle of next month, but I’m back in for more blood checks tomorrow so I’m sure this might be a weekly thing.

The good thing is I’m still walking every day and a little bit further each time which really does help. Just let me know if you need any  more updates as time goes on. Good luck for August.

Rob – Glad things have gone well for you on the SCT and the back pain wasn’t the nasty stuff again. My lower back ached when I came out but I know that was just from walking and having not used any muscles for 2 weeks. Like you say it certainly is doable if you stay positive. Good luck with your recovery.

Pamn – good luck for next month.

Best wishes,

Richard

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