[lottieParticipant]

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

[tony642Moderator]

Hi Lottie,

I am really pleased everything went well and things are looking positive for the future. It is posts like yours that give hope and confidence to those newly diagnosed. I sincerely hope you go into a long remission. I am now over 3 years post-SCT and have had no signs of active cancer since then.

Keep up the good work, onwards and upwards!

regards, Tony

[brewy36Participant]

Hi Lottie,

Thanks so much for the update. I last posted in January saying I was most worried about the Hickman Line and then they decided a Picc Line would suffice after all! So I was admitted last week and had the melphalan last thurs and successful transplant the following day. So far the only side effect has been nausea and fatigue. The hospital staff have been brilliant at just making me a slice of toast when that’s all I fancied. I actually started on the protein shakes ok but when the nausea kicked in I couldn’t even bear to look at the bottle! They are finding some other varieties of shakes or juices which I can try today. I am armed and ready with things waiting for more nasty side effects, I think better to be prepared then pleasantly surprised if they aren’t so bad! Good luck on your continued recuperation.

Liz

[kh0305Moderator]

Hi LottieSo sorry to hear about your brother in law. Sending lots of love to you and the family.
Thank you for the update. It’s fabulous to read how well everything has gone for you and hope it continues to do so for you. Dad was on lenalidomide maintenance when it was being trialled and he had a great 7 years remission post SCT! Keep us updated xx

[lottieParticipant]

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

[maidmarionParticipant]

Hi Lottie,

My husband had his SCT 17 months ago and was told three months later he was in good partial remission with unquantifiable paraproteins, they have remained the same since. We see some changes in his blood tests but definitely nothing significant for us to worry about and they still remain in the ‘normal’ range. He has been on Lenalidomide maintenance for a year now. I hope you find some reassurance that not everyone achieves full remission, but this doesn’t mean the paraproteins are all lurking in the background ready to spring into action again. Big hugs and onwards and upwards 🤗

[tony642Moderator]

Hi Lottie,

My understanding of Paraproteins is that they cannot accurately measure them if they are 2 or less, which is a very low level. They are not saying that you have not got any paraproteins, it’s just that they are so low they can’t measure them.

This is good news, I am in the same position.

Hope this helps.

Regards, Tony

[kh0305Moderator]

Hi Lottie
Lovely to read your update and see that your energy levels and appetite are much improved 🙂 great news on the low Paraprotein too! Hope this continues for you xx

[sandy123Participant]

Hi @lottie and @Judy,

A myeloma diagnosis can come as such a shock and so out of the blue. I remember that feeling as if it was yesterday (in fact it was nearly 11 years ago). So much progress has been made with new drugs and treatments during this time and I hope you both will derive great benefit from these promising new therapies.

I have had two Stem Cell Transplants. The first one lasted over 5 years and the second one over 2. I was terrified the first time but willingly went back for the second one and I would do it again if it was possible/allowed (two is the maximum).

It sounds as if you are gathering lots of helpful information already and this forum is a great place to share things. Are you also aware of the https://www.myeloma.org.uk/help-and-support/peer-buddy-service/ ?This is where you can elect to have a series of conversations with a trained volunteer – who also has myeloma – via 6 Zoom meetings or telephone calls. You can suggest the kind of topics you would like to discuss and will be paired with someone suitable to match your request, e.g. someone who has recently undergone a Stem Cell Transplant.

I am currently in a tricker phase of my journey at second relapse but I would say that living with myeloma has taught me a lot. I made my peace quite early on with the treatable though incurable (yet) nature of the disease and try to live very much day by day, enjoying all kinds of things that I used to take for granted.

For you both, I hope the feeling of shock will ease with time, that you will gather plenty of support around you and that you will respond really well to your treatment.

[sandy123Participant]

@lottie I think I have just posted this in the wrong place on the forum (oops).

I’m so pleased to hear that your transplant has already happened and has gone so well. I am very sorry to hear about your brother-in-law, though. It sounds as if you’ve had many hard things to face this year. The 100 days is quite a significant milestone after a transplant. I hope you will continue to make good progress.

[lottieParticipant]

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

[lottieParticipant]

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

[lottieParticipant]

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

[lottieParticipant]

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

[lottieParticipant]

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

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