[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

[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

[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

[richard48Participant]

Hi Adrian – glad you’re well and approaching your SCT. I nearly had to have another cycle or two as my light chains started to creep back up but we put it down to a virus but luckily it shifted very quickly.

As for things so far re SCT the initial cyclophosphamide wasn’t too bad – I did feel queasy and was sick the morning after just the once, but the anti-sickness tablets kicked this in to touch very quickly (an hour or two honestly)  My appetite went down which was really strange -I couldn’t believe I turned down a piece of chocolate cake on one evening. I would normally eat the whole cake!  The hardest thing recently has been the effects of the GCSF injections – bone pain etc  about 36 hours before collection – but I kept my head in gear by just remembering that the pain was good (as the nurses told me) and it was just the stem cells itching to get out? Not sure if you’re in to mindfulness or meditation but I used it a lot over this time, particularly during the night when the pain was pretty bad but controlling my breathing really helped, and although it was short lived I did get some sleep. Just remember it’s all for the good and is for just a short time and the pain goes away quickly. As for the injections you could get the district nurse to come out to you. I was offered this and I am sure this is routine, which should make things easier. I hope that helps.

I’ve got in touch with Scott thanks and I’ve decided to try and hold fire on things and making a decision on a mini allo SCT until I’ve got through this one, so I don’t get any more anxious.

Good luck with everything and keep me posted.

Rob – like I said to Adrian-I’m putting the mini allo on the back burner for now but if you get any info post SCT at your meeting it would be good to hear.

Best wishes everyone,

Richard

[richard48Participant]

Hi Andy,

The tastebuds may change from time to time but hopefully the water one for you won’t be long. Do you have to drink a certain amount each day- most of the time  it’s 3 litres. Because the myeloma had hit my kidneys I have to make sure I drink at least 3 litres a day (I try to do 4 plus) I’m used to it and it can be boring but when I drink other things they all taste so good -especially a few beers!

It may have been the steroids keeping you awake the other night-dexamethasone. That was exactly the same for me the nights I had to take it.  The thalidomide did help me sleep though on other days/nights in between regular toilet breaks.  It’s about getting your body attuned to it and the rest of the cocktail of drugs that you have to put inside it and I’m sure you will get used to it.

All the best,

Richard

[richard48Participant]

I saw that one thanks Greg, and thanks for the offer of answering further questions/queries if needs be. I’m sure I’ll have some at some point but I need to think about getting this one out the way first really-trying to tell that to myself now.

Roll on Thursday 1st June.

Richard

[richard48Participant]

Thanks Rob,

Glad you’ve got your stem cells and are in soon too. I did have bad pain for about 24 hours from the injections. It was very strange almost like every time my there was a beat from my heart it shuddered through my body. I was told it was all ok and was actually a good thing…! No pain no gain.

Have you ever been asked about having a mini allo/donor transplant at all?  The consultant at MRI and the one I had at Oldham are keen for me to go down this route a few months after this transplant. It’s a tricky decision to make at the moment and I hope to find out more and hear about some people’s own experiences as to why they decided to have a mini allo transplant.

Good luck for the SCT Rob – I’ll keep in touch through my SCT with me being a few days ahead of you.

Richard

 

[richard48Participant]

Hi everyone,

I hope we are all well.

Andy-I hope today went as well as it could. I too have had cycles of VTD- 6 in total. I’ve just started the SCT process and had my stem cells taken out yesterday. I’m back in hospital next week for another chemo and then a return of some of my cells. Like Rob said any questions or advice just ask. The best advice I could give to anyone is just to stay as positive as you can. Yes it’s a kick in the teeth when we find out but we have to keep going. I’ve tried to carry on as normal with a few routines that have to change. It’s not always gone that way but it’s not been too hard.

Rob-any actual dates for you SCT yet? Thought I was going to be delayed but they got me in earlier than expected!

Good luck and take care everyone.

Richard

 

[richard48Participant]

Hi everyone . Hope we are all doing ok.

Alex – how are you getting on with the removal of your spinal brace? I bet it’s a massive relief to get some freedom.

I hope you’ve also managed to get your SCT timeline too. Mine is scheduled to start on 2nd May-got details this week – BUT – my paraproteins went up a little last week and although they have come back down (hopefully it was a blip from the A and E visit/infection) I may have to have  another cycle. Depends on result of biopsy I had on Thursday too. I should know more next Thursday. Another week of waiting – hey ho.

Best wishes everyone,

Richard

[richard48Participant]

Hi All,

Hope we’re all doing ok. Still waiting for SCT but fingers crossed for end of April start. Had a wobble at the weekend – temp spike so ended up in A and E. All sorted but it was a close call today as my infection levels had gone up so they were hesitant about giving me the treatment-luckily they did. My kidney scores went back up. They were down on Saturday and I was told I was dehydrated. I’d had enough water so maybe it was the extra wine I had in Friday night.. but I have had more before so it must have been a virus… The good thing is I could also have the Zometa too today.

Alex-that was certainly one of those ‘downs.’ I wasn’t going to go to hospital as I thought the temp would go down but I have an incredibly supportive and persuasive wife – so she got me sorted. Family matter so much!!

By the way Alex I really appreciate your message about your own SCT. I intend to stay focused throughout and my first couple of weeks in hospital after diagnosis I pretty much did the same and spent a lot of it working (through emails). I know the SCT will be 100 times different but I will remain positive whatever state I’m in.

Leeds Info day was great! Good to meet a few people and the speakers were excellent talking about current research etc but were really down to earth about it all as well as being very high up in the field of Myeloma. Prof Gordon Cook led the conference and has done trials before and is currently in the know with the govt, NICE and some of the drugs companies which was very interesting. Ellen Waters also did a couple of talks which were also good as were discussions about where Myeloma may come from even though no-one really knows.  I’m just glad it wasn’t a Dex day as the food was on free flow all day!!

Best wishes everyone and hope we all continue to stay well.

Richard

[richard48Participant]

Great stuff Alex. Pleased to hear you are doing really well.

Now hoping to have my SCT at the end of April if all goes to plan following my meeting at Manchester Royal. No news on if I’ll be having a second one but consultant in Oldham wants it to happen. We’ll see. Didn’t get any results re my light chains last week but my kidney scores are better so still going in the right direction.

i think exercise is important if you can manage and as I said before it fights off the fatigue. I miss the gym and swimming but we bought a fancy cross trainer and I try to do a bit each day although it wears me out after just a short time but well worth it. It doesn’t hurt my back either. Hopefully I’ll get back to the gym one day when I finish this journey.

Off to Leeds on Saturday for  Myeloma U.K. Info day so hopefully will get some more info/advice. Looking forward to it especially to hear from others and some experts.

Take care everyone

Richard

[richard48Participant]

Hi Chevgr and everyone else.

I’m on cycle 5 of VTD-just started today. Pretty much the same as Rob – 4 visits but over 21 days. Just got a text from Manchester Royal today for an appointment to talk about Stem Cell Transplant. This is good news and hopefully can come soon but I may need more cycles after the 6 planned.

My side effects are pretty much the same as Robs but my back isn’t as bad. It does give me a lot of pain in my pelvis and the consultant has started me on Zometa once per month to strengthen my bones. Had my first lot at the end of cycle 4. The pain might actually be due to old war wounds but he said the meds won’t do me any harm. When I had my original scans and X-ray they only found some Myeloma effected/dark areas/lesions on my skull and nothing around my back/pelvis. Consultant said that it’s not a problem on my skull- just more susceptible to fractures if I bang it.

My light chains/para proteins were 11000 milligrams but have gone down to 1000 after 3 cycles. Waiting for the next set of figures on a Thursday or next week. Long way to go but happy with that. Good news about your scores Rob!!

As for work I still do a couple of days a week in between hospital visits and also work from home. It can be tiring at times but I find doing stuff gets over the feeling of being fatigued and it helps with normality.

Hope all goes well for you.

Best wishes,

Richard

 

[richard48Participant]

How is everyone? Hopefully well with treatments going the right way or just feeling good with or without them. Just a quick update from me. Started my forth cycle this week. All going well and got some results-light chains down 90% from the start of diagnosis which is great news even though they are still in the 1000s. I got my scores wrong in an earlier email.  Kidney scores are also the highest they’ve  been- up to 45 eGFR. I was initially told that they were down to 30 but the nurse must have been reading someone else’s score?  No more side effects-bit of fatigue but not stopping me doing anything. Back/pelvis still sore but it could be sciatica. I made it worse by doing some painting the other day – one of my monthly goals – but worth it and gave me a purpose. I’m still keeping clear of the gym but have bought a cross trainer which is getting used very steadily. Can’t believe how unfit I have become since this all started but I’ll get there. Dr A has given me some calcium tablets and will try me on Zometa once per month – anyone experienced that before? Hopefully it will help and can only be better than tramadol. I took them for a day 2 weeks ago. Tried watching the first 6 Nations game but it was all a haze and I felt away with the fairies – not good. I’d normally be in the pub with a pint in my hand!

Take care everyone and hope things are going well for you all.

Richard

[richard48Participant]

Hi Rob,
Another person close to me – diagnosis month, age (47 when diagnosed 48 a week later -Happy Birthday! ), treatment and cycle! I’ve just finished my 3rd cycle  of  VTD and all going well as I am sure your’s will. My light chain figures have come down by 75% and that was after 2 cycles. Still waiting for results after the third cycle.  My side effects are much the same although I do get very fatigued at times. I took Rebecca’s advice from this forum and find that doing things when I start to feel like this helps-like taking the dog for a walk. I had hoped to get back to the gym at times like these but I’m still fearful of infections and also my back is playing up too. (Sorry to hear about yours). I’ve always had back pain from old war wounds/playing rugby etc and was told the other day that it may actually be sciatica as opposed to the Myeloma as when they did the original scans/x rays no lesions were seen in this area, even though the pain had been bothering me for some time before diagnosis. I am hopefully getting referred to a physio by the Mac Nurse and I’ve been given some painkillers. What’s another pill to the already big mix we have to take. I’ve also gone to my local Cancer Support centre and have managed to get some complimentary therapies and advice including reflexology and relaxation classes. It all helps and keeps me positive. Thats the important part!  Stay positive Rob. It’s the best place to be. I certainly know how hard it has been and will be at times but don’t give up.

Richard

• This reply was modified 7 years, 9 months ago by  richard48.

[richard48Participant]

You’re right about Dr A Angela. He does like to take things slowly. Hopefully my bloods will be sorted soon. Pain in back has been better these last couple of days-probably the steroids and velcade I hope!

Hope Graham’s appointment is good next week too.

Richard

 

 

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