Thanks everyone for your best wishes.
Checked into QUEH in Glasgow earlier and will get Hickman l and chemo tomorrow.
Staff are so lovely.
Will let you know how it all goes.
Best wishes
Lottie
Hi everyone,
Happy New Year.
I had a call on Friday for admittance on Tuesday 03rd January for my STC. I will have a Hickman line fitted on Wednesday followed by the high dose chemo, my stem cells will be returned over 2 days on Thursday and Friday.
Feeling very nervous now but trying to keep positive.
Case all packed and ready to go.
Will keep you posted on how it goes.
Best regards
Lottie
Hi Liz,
I had my consultant’s appointment this morning and as he does not expect my transplant to be this year, he is putting me on another cycle of treatment, same as Cycle 4 which will be Dara and Velcade tomorrow, Velcade Friday, Velcade Tuesday and Friday next week and Dara the following Tuesday. I have PN in my feet so if this gets worst, I will stop the Velcade, it is just Dara works better with Velcade so hoping my PN does not get worst.
It is looking like January for the transplant.
Best regards,
Lottie
xx
Hi Liz,
Thank you for your kind note. It certainly was a stressful time and glad that has finished.
So pleased you had a successful harvest.
It is a worry waiting for the transplant date, I am hoping i may get an idea of how long i have to wait when I have a face2face with the transplant team on the 6th December.
I too had 4 cycles of DDVT which finished end August due to first harvest in September, my proteins were still falling and up to last week were still low. I was advised that as I had chemo in the hospital prior to second harvest that should keep the numbers low, but it is always a worry.
My understanding from a conversation I had with my Clinical Nurse at the start of treatment when I asked the question about the transplant and if I had harvested what would happen if the transplant was delayed. Her response was obviously they do no like to keep people on treatment if they do not require treatment however a decision would be made nearer the time and if there was going to be a delay in the transplant then I would probably continue with the treatment.
I have my consultants appointment tomorrow with a view to commence treatment again on Tuesday so I can update you tomorrow as to how the treatment will progress and for how long. At my consultants appointment last Monday it was mentioned one cycle which would point to a transplant maybe in January.
I will update you tomorrow.
Best regards
Lottie
xx
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
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
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
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
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.
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
Hi Jane,
Thank you for your response.
It is a very strange sensation in your feet. I had the numbness in the toes and the burning sensation in my feet it is not a nice feeling at all.
I had this intermittently maybe for a day or so and then all of a sudden it was more intense, my Clinical Nurse said this sometimes happens.
My consultant is convinced it is the Velcade as this is common with Velcade will hear on Monday, she was thinking of just continuing with Dara as I had such an excellent response to the treatment.
Great news that your feet have returned to normal – hopefully mine will do so too.
Thank you for your good wishes, I can’t believe the harvesting is two weeks away, all happening now very quickly.
Best wishes
Lottie
Hi Stewart,
Thank you for your response, that is great news that the burning pains in your feet went after your SCT. Hopefully mine will do the same. It is a very strange feeling.
Best regards
Lottie
Hi everyone,
Hope you are all well.
I had my assessment at the Stem Cell Harvest Unit yesterday and all went well. I am booked to have my harvesting on the 27th September. My injections will commence four days prior to that.
I do not have a date for the SCT as yet but things are moving forward.
Started my bone strengthener a few weeks ago and now on calcium tablets.
I have had Velcade paused as I am having burning pain and numbness in my feet. My consultant will review next Monday. She is extremely happy with my response to the treatment, para proteins down from 30 to 2.6. My light chains are normal.
So far so good and hope the response continues.
Best regards
Linda
Dear Judy,
Many thanks for all the information on the harvesting that was very kind of you to do that. So glad to hear that you had enough stem cells for two transplants.
I am doing good. I have an appointment next Monday for a medical and provisionally booked for harvesting on the 27th September which could of course change depending on the medical.
I am on Cycle 4 now and have been suffering intermittently with a burning sensation in my feet and tingling sensation in my hands so the Thalidomide has been stopped for the time being and the Velcade was stopped on the second week off Cycle 4 to see how things settle.
I have my monthly consultants appointment in two weeks time so will see what happens with regards the treatment. My consultant says I have had an excellent response to the treatment as my light chains are normal and my proteins are 2.6 so she is not unduly concerned with stopping the treatment for the moment so see if the nerve ends recover.
I will have Dara tomorrow and that will be Cycle 4 finished.
I had a call with the Stem Cell Consultant two weeks ago who went through the full process. I will have the harvesting done at the Cancer Centre and the transplant at the hospital if everything goes to plan.
I have been feeling ok. I have been really busy the last few months so I haven’t had much time to think about things.
Thank you again for all the information that is most helpful.
I am hoping I will get more information next Monday and maybe a timescale.
Best regards
Lottie
Had a call from the Stem Cell Team to arrange a video call to discuss the process so that is set up for next Wednesday.
All moving along nicely.
Lottie
