Thank you Mulberry. It was an awful and sad year. My sister suffered so much, she lost the ability to talk and use her fingers, very tough to watch. She is at peace now.
We had our Christmas with youngest son, daughter in law and two grandsons, first time for a few years so that was enjoyable.
We are off to France next week to see my daughter in law and granddaughter so really looking forward to that. Our first holiday for years, bit nervous but it has to be done. Eldest son split up wth my French daughter in law, so she has returned home to South of France. 2023 was a very stressful year.
I do hope you are keeping well.
Hope 2024 is a good year for you too with many more to come too.
Xxxx
Hi everyone,
I haven’t been on the forum for a long while. As you may recall I lost my brother in law very suddenly in January and my sister had Stage 4 Lung Cancer. Unfortunately my sister’s treatment stopped working in April and she had another treatment after that which also failed. The cancer spread to her brain and lymph nodes. She was admitted to a hospice end July for pain management but never left the hospice and sadly passed away on the 28th October. My husband and I visited the hospice everyday except for a couple of occasions, so my recovery was on hold. So it has been a very tough year.
After my STC my abnormal cells were too small to quantify. I was started on Lenalidomide in April as apparently that is the new protocol after STC in Scotland anyway and a few months later there was no evidence of Myeloma in my bloods and hopefully will continue that way for a while. Sadly, I was unable to bring myself to tell my sister my result as didn’t think that would have been fair, I do know she would have been happy for me.
I have had all my baby vaccines and due for the non live Shingles in January.
The PN in my feet have not been too bad, I have had the odd day when the feet are burning but it doesn’t last long. Bathe them and cream them. The consultant took me off Lenalidomide for a few weeks to see if there was any difference but there wasn’t. Oddly enough the feet started burning after I had the CoVid jabs and booster!
I cannot believe that next Friday will be a year since I had the STC.
I hope everyone is doing well.
I wish everyone a Happy New Year when it arrives.
Best wishes
Lottie
Hi Cath,
I have answered your queries from my experience. I am based in Scotland and aware every Health area can be different.
Another bone biopsy has not been mentioned to me as yet but I have a Consultant appointment in three weeks so may find out then.
I was put forward for harvesting at the end of Cycle 3 and had kidney,lung and heart checks before then. I only had to wait a month for harvesting. I had trouble harvesting so had to be admitted to hospital for chemotherapy and harvesting was scheduled for 1st November which was successful. I was on DVTD and was advised sometimes Daratumumab can cause problems with harvesting for some people. I received an appointment to visit the SCT hospital a few weeks later, had bloods and OBS taken. I was advised that I was 12th on the list and may get called before Christmas and recommended to isolate for ten days before admission however if I was called at short notice I obviously would not be able to isolate for the required time so just to be careful. We were due to go to our son’s for Christmas but cancelled as they have two children which was really hard. I had a call on the 29th December to see if I was available for admission on the 4th January. I had my STC and was released SCT+15.
With regards to work I work from home so was able to continue with that right up to STC. I am currently on six months sick leave however I may just return for two months and leave as want to enjoy my life and not stress around work.
With regards to the vaccines I received a protocol from the hospital on discharge which identified when I had to either commence or end medication and also dates for vaccines. CoVid is the first vaccine due after three months followed by flu vaccine between three to six months. The childhood vaccines commence at six months, second dose three months later and third dose three months after that. I would guess you would not be allowed to travel until you were fully immunised however your Consultant would be able to advise you on that.
Hope the above helps.
Best
Lottie
Hello Cath,
Good luck with your treatment I hope all goes well with that.
After SCT I was advised to isolate for 100 days. No meeting up with people especially indoors until I have my CoVid vaccine which is due in two weeks. I can go out walking but to avoid going near people. If I had to go shopping then to go at quiet times, I get mine delivered. I do know people with children at home have difficulty doing this and it is a case of managing the situation – plenty of hand sanitising.
I was advised after the 100 days to keep wearing my mask and sanitising hands when outdoors and just be careful but not hide away until I get all my childhood vaccines which start six months after SCT.
After SCT you will receive your protocol which gives details of your treatment, when to start and finish medication and when vaccines are due.
If I can help with any other questions please let me know.
Good luck.
Lottie
Hi Sandy123,
Many thanks for your responses and information, much appreciated.
You have had Myeloma for quite a while, sorry to hear that you have relapsed, hope the next treatment goes well.
It was definitely a shock diagnosis, I had never heard of Myeloma and neither had any of the family. I must admit some family members do not discuss the diagnosis at all with me which is difficult.
I have tried to keep myself fairly busy, my sister who recently lost her husband has Stage 4 lung cancer so I was taking her back and forward for treatment until my STC. I haven’t seen her as yet due to the 100 days isolation which is tough under her circumstances.
I am trying to keep as positive as I can and looking forward to get out ad about when I am able too.
Best regards
Lottie
Hi Liz,
Many thanks for your response.
Glad to hear you had minimum side effects hopefully that continued for you and you are now home recovering.
I didn’t mind the milk shakes sometimes the nurse put ice cream in it too which was really refreshing.
Best regards
Lottie
Hi KH0305,
Many thanks for your response and good wishes.
My next appointment with Consultant is mid April so will hear more about the maintenance programme.
Still being active and appetite still good.
Best regards
Lottie
Hi Tony,
Thank you so much for your response and explanation, much appreciated.
Energy levels are still very good onwards and upward as they say.
Chasing up my 1st CoVid vaccine as not received anything yet and due in 2 weeks.
Best regards
Lottie
Hi Maid Marion,
Many thanks for your response that is really useful to know.
I am on Day SCT+75 now and increasing walks.
Best regards
Lottie
SCT+68
Hi everyone,
Thank you all for your lovely comments much appreciated.
Out for daily walks weather permitting. Appetite is back to normal and energy levels are good.
Spoke to CNR for blood results paraproteins are unquantifiable does that mean I am not in full remission does anyone know what that means?
Waiting on first vaccination appointment in a few weeks.
Everything going according to plan.
Best regards
Lottie
Hi everyone,
SCT +46
Sorry for the late response, my brother in law passed away very suddenly while I was in hospital so it has been a very upsetting time as I could not attend the funeral or visit my sister as advised by Consultant that was too risky so attended virtually from home.
Anyway, I had the Hickman line fitted on Wednesday 4th January which I was very nervous about however the staff were brilliant and explained everything, I had local anaesthetic and just felt slight tugging. When the line was removed I felt nothing as local anaesthetic had been applied. So much easier to have bloods taken.
I had the Melphalan on the Wednesday afternoon and everything went good with that too. I was very tired for the next few days so just slept when I felt like it.
All in all I had not too bad a time. I would say I felt rough for 2 days – no appetite, lethargic. I did go off my food, would order something and then did not have the stomach for it so the staff gave me protein milk shakes to drink which were very nice. I was also given toast when I did not feel like eating and advised the staff could make this for me anytime.
I did not get Mucositis, I did have a dry mouth the day after the chemo but staff gave me a spray and that worked well.
I followed the mouth cleaning regime rigidly, every time I did eat something I would clean my teeth and use the mouthwash which obviously worked.
My white cells started to rise on Day 9 and the neuts appeared on Day 11. I was released from hospital on Day 15.
The first week home, I had a sleep in the afternoon. My appetite was good. I started going out for walks the second week home and managing 5,000 steps per day. Bloods have all been good since then.
I had bloods taken this morning and a call from my Consultant to advise my bloods were good again and as I was doing so well, he would see me in 2 months – 100 days mark approximately. He did mention Lenalidomide maintenance treatment from Day 100 and is going to send me out information on that. My neuts ae sitting at 2.5 and stable.
I cannot fault the staff in the QUEH in Glasgow, they were all brilliant and could not do enough for me.
Fingers crossed everything continues to go well.
Best regards
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
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
