[kh0305Moderator]

Hi Lottie,
So lovely to read that everything is moving in the right direction! Hopefully the numbness will improve once the velcade stops. Not long now until harvesting. Keep us posted and hope not too long until you get a date for the SCT xx

[lottieParticipant]

Hi kh0305,

Thank you.

I hope the feet settle down they are quit uncomfortable in the morning, I have bought a spikey ball so started using that to get the blood moving around will see if that helps.

My treatment has been paused until after harvesting so that will give the feet a rest.

I collected my injections for Friday which I have to inject myself. The consultant has arranged for me to visit a nurse at the unit so she can show me what to do as I have never injected myself before. Cannot believe a week tomorrow I will be harvesting.

Best regards

Lottie xx

[kh0305Moderator]

Hi Lottie,

Yes, I can imagine they’re pretty unpleasant to deal with but hopefully the ball will help as will the break from the meds. The injections aren’t too bad to administer. I think its the thought of it is the worst part!! Good luck with it and not long now until the harvesting! Another step along the ladder.
xx

[tony642Moderator]

Hi Lottie,

I am also one of the forum volunteers. I know it must have come as a shock to be diagnosed, but as has already been said, although it is incurable, it is very treatable.

Not everyone gets offered SCT. I think there are a number of factors for the decision, but I think age is a major one. I don`t think may are offered it over 70, so if you have been offered it, I think you might take into consideration that if you say no now, they might not offer it again in the future!

I have to be honest, SCT is not pleasant, but I had mine 2 and a half years ago and I have had no detectable paraproteins since, so for me, it was worth it. My disease was so advanced when I was diagnosed that I was given a prognosis of 6 to 12 months without the treatment, so for me, the decision didn`t take any thinking about.

Many people have gone on after treatment for many years to live quite a normal life. I would discuss any worries you have with your specialist nurse, and dont forget that there is theAsk the nurse` facility on this website under help and support.

Please let us know how you get on and what you decide to do.

regards, Tony

[lottieParticipant]

Hi everyone,

Gutted to say the least.

I had my harvesting set for Tuesday – Thursday this week and started the two injections in the stomach Friday – Monday. On arrival at hospital on Tuesday had bloods taken and two hours later was advised that I did not have any stem cells to harvest. So I was sent home with 2 more injections along with Plerixafor.

Returned on Wednesday and had bloods and informed two hours later that I had stem cells to harvest so connected to machine and was connected for five hours – I was advised that the machine goes slower if you are smaller and lighter. I was also told I would have to return on Thursday.

Anyway, I had two injections in stomach at hospital before I left on Wednesday and also given another Plerixafor to take at 22:00 and was advised when I arrived on Thursday I would go straight on machine as I had received a good response to Plerixafor and would not be at the hospital for five hours on Thursday.

Today I arrived and was connected to the machine and bloods were then taken and sent off. Around lunchtime the consultant arrived with a colleague to advise that my blood test showed a drop in white cells and no stem cells for harvesting so I had been connected all morning for nothing it seems although the machine was operating and the bag was filing up. They have sent the bag off to see if there were any stem cells but not holding my breath.

There is a weekly meeting tomorrow and I will be discussed. The consultant said I could be called back in a few weeks time to go through it all again or an option for chemotherapy and injections. My system needs to recover before any further treatment.

Has anyone had this issue? Apparently this can happen they do not know why.

Just gutted as I have been having my checks for the transplant.

Lottie.

[mulberryParticipant]

I’m sorry to hear this Lottie, but I know other myeloma patients who have had the experience of going to harvest and finding no stem cells. It’s not that uncommon which is why blood tests are done several times during the process. Usually after a recovery period, stem cells are found second time around. I haven’t heard of having a successful day 1 harvest then nothing day 2, but there are so many uniquenesses about
myeloma patient experience, I’m not surprised this could happen.
Usually patients feel pretty well between end of treatment and harvest, I hope the silver lining is a few weeks of feeling ‘normal’.
Best wishes for Round Two.

[lottieParticipant]

Thank you Mulberry for your lovely response.

I have just heard that I did manage to harvest 0.469 yesterday even although the blood test showed I had no stem cells to harvest so now very confused.

I was connected for just over two hours and the machine was working away and the bag was filling up so was shocked when I was informed I did not have any stem cells to harvest. Will ask consultant next week.

Best regards

Linda

[kh0305Moderator]

Hi Linda,
Sorry to hear this but, like Mulberry, I’ve also heard of people not having stem cells to harvest unfortunately. Im pleased they managed to get some and hopefully after a period of rest the second attempt will be more successful. Try not to let it get you down – stay positive and lets keep everything crossed for round 2 for you. It’ll be here before you know it xx

[lottieParticipant]

Hi everyone,

It has been a busy few weeks.

I had to go into hospital on the 23rd October to get a high dose chemo to boost the stem cells which I coped with well, was slightly sick but that was all.

I had another appointment on the 31st October for stem cell harvesting, bloods taken insufficient cells again so sent away with three GSF and a Plerixafor injections, connected to machine the next day and managed to complete the harvest. I was so pleased and was getting very concerned about the harvesting.

I then had an email from Test and Protect on the 2nd November to say I had a positive CoVid test from my PCR on the 01st November. Couldn’t understand that as had three negative tests in hospital and hadn’t been anywhere. Anyway called team to notify, my bone strengthener was cancelled, notified the harvesting team who advised my cells may have to be sent away for checking, called GP who gave me anti viral team number, was not allowed anti virals as no symptoms. Had a very stressful three days as concerned about my collected cells. Anyway, Friday 4th November at 21.00 received another email and text message from Test and Protect to advice my PCR on the 01st was Negative. All that worry for nothing. I was advised that I had received a False Positive.

Anyway, had my consultants appointment on Monday and he is suggesting putting me back on treatment for a month until we hear from transplant team to keep things at bay.

I received a call from the transplant team to arrange a face-to-face on the 6th December so all happening now.

I may be in hospital for Christmas. Will keep you updated.

Best regards

Lottie

[mulberryParticipant]

Hi Lottie
What a stressful period you’ve been through, at a time when many of us feel pretty well & healthy. Hopefully that part is well and truly over now.
Many of us end up with a longer gap between harvest and transplant than initially planned, often because of bed availability. There can be quite a gap between end of induction and the transplant without intermediate treatment, (for example I had 42 days with only one dose of cyclophosphamide in this period). Normally it doesn’t really matter if myeloma levels creep up a little, as the melphalan will cause apoptosis and kill it off. However I have heard of a few patients where their myeloma has really taken advantage of delays to reactivate with a vengeance, so your drs approach seems to me to be a helpful “belt and braces” cautious approach to avoid you having yet more stress.
Although it wouldn’t be nice to miss Christmas, it will be nice for you to start the New Year in recovery and able to put all this treatment behind you. I hope that you have a date soon.
Jane

[ottoParticipant]

Hi Lottie,

Just back on here as I’m searching for a clear approach, what’s next for me in way of treatment etc…

I saw you are to start Bortezomib, thalidomide, and dexamethasone (VTD).. you’re probably way into this now. How did you get on?

I was lucky that my job included health care and in 2018 I was offered Bortezomib, thalidomide, and dexamethasone (VTD). I remember handling ok, but was tiered after, probably more emotionally, which really can play a big part with our energy levels.

I hope your treatment went well.

Kim

[tony642Moderator]

Hi Judy,

From my own personal point of view, I found that the more I knew about the disease, the better I was able to cope with it, particularly when medical staff use terms that you don`t understand and that you do not know the significations of.

You cannot know too much, it is your body and you owe it to yourself to know what is happening with it. I think that if you know what is likely to face you, you can be more prepared for when and if it does happen. Knowledge is power. Stay positive.

Regards, Tony

[lottieParticipant]

Thank you Jane for your lovely response. Apologies for not replying sooner my brother in law was admitted to hospital so has been a busy few days.

It has been a very stressful period that is for sure, looking forward to receiving a date for the transplant I may find out more tomorrow at my consultants appointment.

Will keep you posted.

Best regards

Lottie

[lottieParticipant]

Hi Kim,

My treatment started at the end of May and I had 4 cycles. I got on very well with the DVTD, although the Thalidomide was reduced to 50 mg as I started to have PN in my feet. It was then discovered it was the Velcade that was causing it so I was going to continue with Dara and Dex however I then received notification for harvesting so treatment was paused.

I still have the PN in my feet however not as bad as I was given exercises to do from my Podiatrist which is helping.

I have my consultants appointment tomorrow with a view to restart treatment until a date for my transplant comes through, so will hear tomorrow whether I will just have Dara and Dex or if Velcade will commence too.

My system coped well with the treatment, I only had the PN so thankful for that.

Best regards

Lottie

[brewy36Participant]

Hi Lottie
So sorry to hear about the stressful time you have been having. I had a successful harvest earlier this month and am now waiting for a date for my transplant which I’m aware won’t be until sometime in the new year. My worry, which I think Jane has answered somewhat, is what happens if my levels rise again due to a delay? I’m not on any treatment at all right now (I had 4 cycles of DDVT) previously. So would I have to repeat that and then would that delay the transplant further?
Thanks in advance for any advice.
Liz

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