[lottieParticipant]

Hi everyone,

I had my consultants appointment today and my protein levels have come down from 30 to 5 and that was the blood test carried out at the end of June.

My Haemotologist is putting me forward for a stem cell transplant she explained quite a bit about it. She said I would probably receive a video call about the treatment and not to get too alarmed at the information they will give me as they have to cover all aspects.

Starting cycle 3 tomorrow so all good.

Cannot believe they have come down so quickly.

If you have any experience of a stem cell transplant and what to expect would be greatly appreciated. I do appreciate that everyone is unique but any tips would be appreciated.

Best regards

Lottie xx

[tony642Moderator]

Hi Lottie,

I am one of the forum volunteers. Great news about your paraproteins and that you can now move forward to SCT. I have had the procedure so I can tell you what it was like for me.

First of all, you will need to have your stem cells harvested. This is done on a specialist unit and I have been told that there are only 9 centres in England that do it, I had to travel 70 miles each way to get mine done. The process takes at least a day, and possibly up to 2 days depending on how quickly they can do the harvest. You may need a shot of chemo before the harvest, but I did not find any side effects from mine.

They then store the cells in liquid nitrogen until they are ready to be re-implanted. When the time comes (I was waiting about 2 months), they will send you to a specialist oncology unit. They tell you that you could spend up to 4 weeks there, although I was only in for 3 weeks. They give you a high-dose chemo drug, I had Melphelan, and to be honest the side effects are not pleasant. I knew I would lose my hair so I did not want the chemo to take it, so I shaved my head the day before I went in!

You may well get something called mucositis, which is inflammation of the mucus membranes in your mouth and throat. This is unpleasant but you have to remember that it is only temporary and for me far outweighed the benefit I got from the SCT. You will be in an isolation room as yuo will have no immunity to germs, bacteria, viruses etc. You will even have what is known as a neutropenic diet to make sure that there are no bacteria in the food you eat. For example, you can eat the flesh of an apple, but you cannot eat the skin as no matter how many times you wash it, you cannot guarantee it being germ-free.

Most rooms have their own fridge/freezer. I found eating difficult due to the mucositis, so I lived on ice pops and yogurts which were both easy to swallow and soothing due to them being cold. You probably will not feel like eating or chewing anything solid for a few days.

I had my transplant 2 and a half years ago, and to date, there has been no sign of the cancer returning. As I have already said, I found the effects of the chemo unpleasant, and the isolation was difficult, but was it worth it? Well, for me, absolutely I would go through it again if I needed to as there is a good chance I would not be here today if I hadn`t.

Be positive about it and keep your chin up. If there is anything else you need to know, please ask, and let us know how yo get on.

Regards, Tony

[kevinParticipant]

Hello Lottie

Great news how things are going. As you say everyone is unique. I was even ‘unique’ with myself !!!! I had my second and final SCT back in 2013 which gave me another full remission. The experiences from each one (my first was in 2007) were different for me – side effects etc. All I could offer is that I found passing the time difficult as you are essentially confined in your room. So take as many things as you can to keep you occupied and maybe even think of a new hobby you may have wanted to try that you can do in your room. The other thing I remember is lack of appetite after the melphalan. When it did start to return I had cravings for all sorts of things that are not part of a balanced diet eg basic cheese burger, haribos and various flavoured fizzy drinks. The main thing for me though was passing the time. Its a bit of a journey but doable. Best wishes
Take care
Kevin

[kh0305Moderator]

Hi Lottie,
Fab news regarding the paraprotein levels!! Tony has given a very comprehensive overview of the SCT process. It was very similar for my dad and he stayed in for two weeks afterwards. Dad was lucky to avoid getting the mucositis as I force fed him ice cubes non stop throughout the melphelan infusion, despite his complaining but it definitely helped. He lost his hair but on the plus side when it grew back it was without greys!! The eating can be a challenge with nausea/lack of appetite/change in taste but do your best to find something you can eat. It took dad a long while to recover from mostly the lethargy following the SCT but he got 7 years of remission from it so it was definitely worth doing. As Tony says, there will be tough days/times/side effects but remember it is only temporary and the end result will be worth it and we are all here for you! xx

[lottieParticipant]

Hi Tony,

Apologies for late response. We have a few medical issues in the family so been a stressful time as my relative was not responding to the treatment and saying goodbye to his family, thankfully he has turned the corner and improving.

Thank you for your detailed response on the SCT, that is most helpful. I am waiting on the appointment from the team and I have been told it will be carried out at The Beatson Centre in Glasgow as I live in Scotland so not too far away. My consultant could not put a timescale on it as she said they were very busy and all depends on bed availability. Good to know about the fridge/freezer will make sure I have plenty of yoghurts etc.

I must admit I am not looking forward to the strong chemotherapy, I knew I would lose the hair so probably shave that before I start. Just side effects concerned about.

Regards

Lottie

I had a lower does of steroids in my take home meds to take when I was in for the start of Cycle 3 so I called my Clinical Nurse who checked the system and confirmed that I only have Dara every second week this cycle so missing out 2 weeks. I still have the 4 Velcades during the first 2 weeks which means the last week of Cycle 3 will be injection and steroid free so looking forward to that. Maybe this is to do with the proteins coming down. At my first Consultant’s appointment he did say from the 9th week Dara was fortnightly however speaking to other people who were in for treatment told me that Cycle 3 and Cycle 4 were the same as Cycle 1 and 2 – probably different for everyone.

My blood checks are now down to middle of the month and at the start of the new Cycle so pleased about that too as had to travel to the hospital to get that done, just felt I was never away from there for a while.

So glad to hear that you are still in remission, long may that continue.

Thank you again for your detailed response.

[lottieParticipant]

Hello Kevin,

Apologies for the late response as you will see from my post to Tony we have had a family illness.

Thank you so much for responding and for the information which is really helpful. I have heard that you do get cravings for different food wonder what mine will be.

I will make sure I have plenty to do. I started on the Family Tree but due to recent circumstance I have not returned to it, I can do most of it on the laptop so usually once I get started on it I can’t stop so will carry on with that and look out some books etc too.

Glad you are still in remission, long may this continue.

Best regards

Lottie

[lottieParticipant]

Hello KHO3O5,

As per responses to Tony and Kevin apologies for late response we have had a family illness.

Thank you for responding and the information. I have heard about the mucositis, doesn’t sound very pleasant but heard like you say to take ice cubes constantly appears to do the trick.

The hair loss I was advised about at start of treatment. I am on Chemotherapy and was told hair loss would not happen but hair thinning would so finding bits of hair around the place so maybe by the time the SCT arrives the hair will be much less to shave off.

My steroids have now reduced from 40mg on a Tuesday and Wednesday to 20mg which I am pleased about. I was finding the high dose was making me emotional so I am hoping this will reduce with the smaller dosage.

My Dara is now fortnightly from Cycle 3 and Velcade still 4 for the first two weeks, this means I have a free week at the end of Cycle 3 which I am looking forward too.

I am going to be getting the bone strengthener from Cycle 4 so advised to see the dentist before this starts so have an appointment this week for a quick check. I am confident everything will be ok as I had a dental check up before treatment however you never know what the treatment is doing to your teeth.

So glad your Dad is doing well and he had a good remission.

Thank you again for your response very much appreciate it and the advice.

Lottie xx

[kh0305Moderator]

Hi Lottie,
Sorry to hear about the family illness – hope everyone is feeling better now.
Will be good to have a break from the travelling and needles bless you and good to hear the steroid dosage has come down as the effects they have on emotions and sleep are not helpful!
Good luck with the dental check up and hopefully not too long a wait for your SCT.
Thanks so much for the best wishes for dad and here’s hoping everything continues to go well for you xx

[tony642Moderator]

Hi Lottie,

Thanks for the update, I am pleased that things are going in the right direction for you. As for bone strengtheners, I am on a daily tablet dose of Adcal, which is a calcium supplement, and a monthly infusion of Zometa to help reduce the likelihood of fractures in the future. The only side effects I get from that are feeling a bit rubbish a couple of hours after I have had it, but I find that if I go to sleep for a couple of hours I am usually ok.

Keep your chin up and stay positive and keep us updated with your progress.

Regards, Tony

[lottieParticipant]

Hi kh0305,

My brother in law has turned the corner and out of danger so we can all relax a bit.

My proteins are now sitting at 3.2 so that was good news.

I have received a letter from the SCT team along with an information book. I had to call them with contact details as they advised I may receive a call at short notice to discuss the process so just waiting on the call. Looks like things are moving along nicely.

Best regards

Lottie

[lottieParticipant]

Hi Tony,

Thank you for your lovely response.

My dental check up was good so all good to go with the bone strengthener next Cycle.

My proteins are now sitting at 3.2 so that was good news.

I also received a letter and info pack from the SCT team who asked me to call with contact details they advised I may receive a call at short notice to discuss the process so looks like things are moving along nicely.

Going to enjoy a week off from treatment saves a lot of car trips.

Hope you are doing well.

Best regards

Lottie

[bigmac01Participant]

Hello,
My name is Andrew Macpherson.
I’m 55 years old, very fit and active, and was diagnosed with Myeloma 2 years ago.
I live in Hong Kong. We don’t have this level of support. I’m so glad I found this forum.
My doctor in Hong Kong says my condition is smoldering and it’s not changed for 2 years.
I have no symptoms.
My main question is, at what point in time is it recommended to start treatment.
Is it the case “the sooner the better, or is there a particular set of factors?
Does anyone know of a specialist in the UK who I could send my test result to for a 2nd opinion.
Thank you
Andrew

• This reply was modified 2 years, 4 months ago by  bigmac01.

[bearParticipant]

It does depend on the risk factors. Have you had the workup to determine the genetics as some variants are high risk and might justify early intervention.

[bigmac01Participant]

Hi bear, thanks for your note. I don’t know what a workup is. How can I find out more. Thanks

[kh0305Moderator]

Hi Lottie,
Great to hear your BIL has turned a corner and that the SCT process is moving along nicely! I hope both continue to move along in a positive manner for you and your family. Sending best wishes xx

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