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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
I was diagnosed in March and my treatment stated in June with Velcade Daratumamab Thalidomide etc
I don’t know about anyone else but I feel I have not received the information I need regarding everything.
Quite a few cock ups have happened.
The first delivery of my Chemo drugs had the wrong date of birth
The second delivery had three different tablets missing. When I rang up to inform them I was told I was not to take those tablets again even though they appeared on my timetable sheet.
Plus other mistakes too many to list.
I was admitted to hospital with Arterial Flutter and according to my discharge paperwork, Sepsis. I was in hospital for 4 nights.
Some weeks later I had an appointment atbthe transplant hospital with regard to my harvesting. The doctor wanted me in the following week. I explained to him I was still on chemo tablets due to my admission and my tablets had been suspended for 3 weeks.
He was totally unaware of this as the hospital I was admitted to had not informed them.
My appointment had to be put back. My harvesting was completed last week over four days until they collected the required amount.
It has never been explained to me what the course of action is if I decided against the transplant.
I am and always have been an I dotter and a T crosser, so it isn’t easy for me to accept snippets of information and not the whole story.
Conversations by telephone with my consultant are few and far between and can only be described as rushed.
Am I being over sensitive but it is cancer after all.
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 Jolly Northerner
Know exactly how you feel!
We were told dad had another 3 cycles of his chemo left… fast forward two consultant appointments and our usual consultant and a different story. Oh you shouldn’t have been on a dose that high so long…
Well, how do we know that?!
We have also had meds arrive with new dosages that wewerent told about and dads been sent home without bloods being taken even though he challenged it. It is frustrating, as like you I am very detail oriented, but we have got used to it and now just keep an eye on it and challenge/ask questions. Shouldn’t be that way though! xx
Hi Lottie,
Sorry to hear you have had such a stressful time but I hope all goes well for a SCT in January after all of this waiting – keeping everything crossed for you xx
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
Best wishes for your transplant Lottie.
I remember the nervousness well, having had so many treatments and procedures, warnings about side effects etc leading up to SCT.
I found that the team looking after me were kind and experienced, and the procedure was not as daunting as I had expected, I hope the same is true for you.
My SCT now feels in the dimmed and distant past: 4 years ago at the start of February. Since then I have only needed low dose maintenance, and I often feel I am a fraudulent patient. Just bi monthly blood tests and telephone appointments, it’s now easy to get on with other things in life.
I hope your stay in hospital is as short as possible, and side effects are minimal.
Take things to do which are easy to concentrate on, and some hats to keep your head warm.
The recent ASH conference in December published research to show that SCT patients do not need the strict neutropenic diet that has been used up until now, so hopefully you will be able to eat anything that you fancy.
Please let us know how you are getting on.
Best wishes
Jane
Good luck with it Lottie,
Keep your chin up and stay positive, let us know how you are doing with it.
Regards, Tony
Hi Lottie
Good luck with everything.
Please keep us posted.
I was harvested in early December but only enough cells were harvested for one transplant.
I visited the transplant consultant mid December. My latest bloods showed that I was in remission. We discussed this and I decided to postpone the transplant to see how long my remission lasts.
Meanwhile my hospital contacted me two weeks later advising me I need to now take cycles 5 and 6 of my Chemo and resume my weekly injections of Daratumamab and Velcade.
Llottie you will be in my thoughts and I wish you well.
Keep in touch
Thanks
DJ
Good luck Lottie!
I seem to be following you on this journey! I haven’t been given a definite date for my SCT yet, just to expect it from mid Jan. I had my 6 wk consultation just before Christmas and everything was stable so that was a relief. Got an appointment at the wig salon coming up. Can you, or anyone, tell me how you go on having the Hickman line put in? Think I’m more worried about that than anything! I was expecting to have a Picc line but was told that because my veins are narrow and blood trickles out of me (had to use femeral artery for harvesting), that this was the better option?
Thanks,
Liz
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 Liz,
The Hickman Line is my concern too so you are not alone on that. Will let you know tomorrow how it goes.
I only had a call on Friday about admission so be prepared for a last minute phone call for your STC
Best regards
Lottie
Re Hickman line.
I was given strong anti everything liquid body wash which destroys the skin microbiome and was asked to shower in the hospital shortly before the procedure.
I had the option of local or general anaesthesia, but was warned after general anaesthetic I’d be kept in the hospital for a few hours (& I could see a groggy patient coming round from anaesthetic) so I opted for the local.
The surgeon and nurses kept up a constant dialogue, telling me what was being done and what to expect.
It was an odd experience, with a bit of tugging as the lines were inserted through the skin, but it wasn’t painful or terrifying, and should I need one again I’d again go for local anaesthetic.
I was out of the hospital within an hour of it being done I think.
I didn’t enjoy having the Hickman line in and although it caused me no problems like infection and only minor blockage, I was very pleased to have it removed (which seemed relatively quick and not painful).
While you have the Hickman line in, you need to avoid the area getting wet when you shower.
I found putting the tubes into a zip lock plastic bag, zip lock downwards, then taping it to my shoulder worked pretty well, whilst I showered.
Best wishes to everyone going through this procedure.
Hi all,
I had a Hickman line inserted before SCT, and had it under local anesthetic. They made 2 incisions in my upper right chest, just below the collarbone. The idea is to get a line straight into the jugular vein. They can administer all your IV drugs and take blood samples from this. It is much better than having a canular in the back of your hand.
The procedure is not painful, but there is a lot of pulling and tugging going on, so it is not comfortable. If you feel any pain, tell them and they can top up the local anesthetic. When inserting the tube, they have to do it by watching an X-ray machine to make sure it goes in the right place. It took about 45 minutes to complete.
I hope this helps.
Regards, Tony
Hi Lottie,
Hope all is going well so far. Thinking of you and sending best wishes for the process. Dad didn’t have a Hickman line, so I hope it has gone ok for you and not too uncomfortable. Good luck with everything xx
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