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
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
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
Hi all,
Thanks for all the good wishes
Richard – I have not had any discussion with the consultants about a mini allo/donor transplant post SCT. I am having another consultation at UCLH on Wednesday so hopefully find out a bit more about treatment post SCT. I guess it depends to a certain extent the degree of effectiveness of the SCT. Good luck for Thursday
Annlynne – Hope the SCT goes well.
Andy – glad you have started treatment unfortunately the dex/steroids did cause me sleepless nights aswell. It will wear off but unfortunately you will probably have “dex days” in each cycle, which whilst difficult to avoid you will learn to live with. Keep positive and I hope the treatment goes well for you.
All the best
Rob
Hi Richard,
Good to hear your into SCT process and that the harvesting went ok. I had my harvest a few weeks ago, a bit of a drama just before the harvest with an unusually severe reaction (intense lower back pains) to the GCSF injections but thankfully that was just for a short period and we got the stem cells we needed. I had to get clearance from the orthopaedic consultant to go ahead with the SCT given the lower back problems I have had, but fingers crossed I am booked in for the 5th June for the SCT.
Best of luck for next week.
Rob
Hi Andy,
Sorry you had to find us and welcome. I was diagnosed about five months ago, and have had four cycles of VTD and am waiting for a stem cell transplant hopefully in June. Happy to share my experiences if you have any questions.
All the best with the treatment.
Rob
Hi Richard,
Good to hear you have recovered from your trip to A&E. Glad it didn’t stop the treatment.
Had some good news, I went the RNOH back specialist on Tuesday and I can now start the removal of my spinal brace and hopefully get a bit of independence back.
I am going into London next week to have a consultation at UCLH so hopefully will have a better idea for the timeline for a SCT.
All the best
Rob
Morning all,
Just about to start Cycle 4 of VTD today. Just wanted to say thanks to Greg and Alex for your positive posts and advice, encouraging to know that we get back to being active. .
Richard good news about getting a date for the SCT. I am due to go into London to UCHL in early April to hopefully get indication of when I can have the operation.
All the best
Rob
Hi,
I don’t know if 49 (or 48) is high I have come across people who started with higher and lower, they say the range is upto 90. For me I was fortunate to start soon after diagnosis but I think that was partly due to the fact that I had quite a bit of bone damage in my lower back resulting in fractured lumbar which needed to be addressed. It also may depend on when and what day the hospital starts the cycle as the myeloma treatment seems to be on set days.
My treatment is a 28 day cycle (though some people I have met have 21 day cycles). I have been told to expect 4-6 cycles of the initial VTD treatment then hopefully a stem cell operation. Each cycle I have four visits to the hospital for the Velcade injections and once for a pamidronate infusion (to strenghthen and protect the bones), the rest of the medicine I self administer at home.
Whether to work is a very individual decision, I guess depending on injuries and reaction to the medicines. I have not worked since diagnosis as the doctor has signed me off each time. My situation is complicated by the fact that I am wearing a back brace so I am not currently driving, but would like to go back at some point during the treatment but full time may not be practical given the appointments and some days you don’t feel up to it and also need to consider risk of infection. Your doctor should be able to advise on work.
Hope your treatment starts soon and it goes well.
All the best Rob
Hi Chevgr,
I am just coming to the end of cycle 3 of my treatment (Velcade, Thalidomide and Dexemethasone). Whilst we are all fighting a common enemy, I understand all our situations and our reactions to treatment are individual. I understand VTD is one of the most common treatment plans, the side effects I have had are tiredness/interrupted sleep due to the steroids and a little bit of tingling in the fingers but this has been managed by adjusting dosage. Yes there are some days when I feel bad but there are also at least as many good days in the cycle when I feel like myself.
My paraproteins are nearly down to single figures (I started at 48), so even though it is a long process it is working just need to be patient and keep positive.
Wishing you all the best with your treatment.
Rob
Hi Richard,
Good to hear your good news on the light chains, and that you sound like you are moving forward day by day.
Doing OK my pp measure has been coming down so haematology doctor seems pleased. In terms of side effects the peripheral neuropathy has improved. Still have some back ache, I think some of it is also psychology in that I worry about getting another fracture.
I am going into the treatment centre on Tuesday to have a Pamidronate infusion (I think it has a similar objective to Zometa in terms of trying to strengthen the bones) which I am to be having once a month. I am into cycle 3, I had one at the start of the chemo when I was in hospital but can’t remember too much as that was a bit of a blur.
Glad you are keeping active, I do sometimes find it difficult going from an active lifestyle (work, running around after the kids, taxi driving service and sport) to being restricted by the impact of MM and wearing my spinal brace and being mainly at home alone. I am trying to do a bit more day by day without overdoing it. I like your idea of setting yourself goals.
My trip into London to UCHL went OK. It was mostly about informing me about the process for the STC treatment though I am at least a few months off this at least given I am starting cycle 3, but it is good that I am on their radar.
Completely agree watching 6 Nations not quite the same without a pint in your hand.
Wishing you all the best
Rob
Hi Simon,
I was diagnosed just before xmas. Understand what you have been going through, I spent nights awake in hospital asking why me? and worrying about the future. Whilst I do have off days, things have got better I am home and off crutches and getting more mobile day by day despite having to wear a spinal brace, and just finishing my second cycle of VTD.
I also found the Myeloma UK helpline really helpful. Try and stay positive, I know sometimes it is difficult after the cancer diagnosis, but think of the positives your wife and your young daughter (I have my hands full with three kids).
Being a Northerner I played a little bit of Rugby League (not very well) many years ago and I know it is a sport of honest and tough characters who battle and never give up. I also coached a youth football team as a volunteer right up to the incident where I fractured my lumbar. I knew things were not quite right for a month or two, but I was told initially the back pain could be a slipped disc or a strain, but this just got worse. I guess we have to practice what we preach about being positive, staying focussed and battling in the face of adversity.
Wishing you all the best.
Rob
Hi all,
Interesting reading your posts. I can identify with the ups and downs of taking Dex. I am just coming to the end of my second VTD 28 day cycle, so I am still getting use to things but I can see a pattern emerging with Dex and the treatment. I take Dex eight times in the first two weeks of the cycle with four injections of Velcade. My mood has been fine and in the first two weeks sometimes it is almost like a mild high, but the problem I have been having is the insomnia, feeling tired and lying awake at night but not being able to sleep. I know this is the medicines as my sleep improves considerably by the middle of the third week.
In terms of moods I think the 2-3 days after coming off the dex I feel weak and grouchy, this normally the time I have my appointment with the consultant, so they generally see me at my worst.
I guess we all react differently to the treatment as individuals. I have found keeping a diary helpful as it has helped me to understand patterns and degree of side effects, and I can help my family understand when I might me at my best or worst.
All the best
Rob
Hi Richard,
Thanks for the encouraging words. Yes MM was a Xmas present I won’t forget (I started chemo on the 23rd Dec).
I am doing fine and feeling positive today like I want to get out and do more. I am finding the final week of the cycle OK, although I am only coming to the end of cycle 2 it is the start of the third week and coming off the steroids that tends to be the worst for me.
Side effects not too bad, the fatigue comes and goes. I have some neuropathy in the end of my fingers and right thigh (the fractured lumbar and pain are all on my right side). I have had my dosage of thalidomide reduced to hopefully help reduce this. I have been assured this will not alter the effectiveness of the treatment.
This week seeing my haematology consultant so fingers crossed for some better results. On Wednesday I am off to London to see a consultant at UCLH to discuss a future SCT treatment.
Would be interested to know what sort of physio you get outside the hospital? I have not any outside the hospital. They were very good in ensuring I got the right back brace early to hopefully help back heal correctly. I have found the Myeloma website useful in terms of exercises. I guess it’s getting the right balance building my strength back up without overdoing it.
I am taking Rebecca’s and your advice and going off for a short walk before the skies open. Hope your treatment goes well.
All the best Rob
Richard et al,
I am 47 and was diagnosed with MM just before Xmas. I am currently on my second cycle of VTD. So far side effects OK a bit of numbness in fingers and thigh which doctor is aware of. It was a shock a lot happened quickly resulting in fractured lumbar and a visit to A&E, I had been suffering from unexplained lower back pains. I am wearing a spinal brace for next two months. A lot of time to reflect going from a busy lifestyle to living in a bubble away from work and outdoor activities.
Appreciate being able to read your posts and helps me make sense of my situation and feel not so alone.
All the best
Rob
