[twinzParticipant]

Hi

I had to have 2 more cycles after my SCT and then I went on to maintenance treatment.
It is a bit disappointing but it will get better once on maintenance.
I am now 18months in remission and only have to go to the hospital now once every 2 months just for a blood test. My consultations are done over the phone.

I hope everything goes well for your husband and just remember it WILL get better.

[twinzParticipant]

Hi

I had my final Zometa last week (24 sessions) and cannot say I have experienced any side effects.

[twinzParticipant]

Hi Briggsfamily1974gmail-com

Hope you don’t mind me replying. I had my SCT end of November 2022 and now in remission and on maintenance.

Like lots of people say on this forum, Myeloma is very a different experience for each patient.
During my time in hospital I too suffered from nausea and didnt eat for most of the 3 weeks I was there apart from 2 small idividual tubs of vanilla ice cream . The dietician came to see me and bought a bag of snack items,but just took one look at me and said she would come back in a week’s time to see me as even the thought of food made me feel ill.

I didn’t have any visitors at all during my 3 week stay, as I felt I wouldn’t be much company to anyone. My husband and I agreed to face time each other instead.

I had shaved my head a few months before I went in as I knew the chemo would be lethal and I had started to lose some of it already, but the pillows in hospital were still covered in dark hair every morning,but thankfully all the bedding was changed every day.

I also had very little energy and the fatigue was horrendous and I just wanted to sleep for the first 8-10 days. My observations were also completed every 4 hours which is very annoying especially during the night. My room was near the nurses station too, which didn’t help as could be quite noisy at night.

My picc line got infected and had to be removed, which didn’t help when they wanted blood tests all the time as my veins aren’t very good and my arms were both virtually black when I left hospital.

I then seemed to slowly start to feel a bit better and managed to get up and showered and dressed.
I eventually left hospital on day 20 (20th Dec) and was just glad to be home if not at all feeling very festive.

My Xmas Dinner was a small plain jacket potato without any butter or topping which my husband cooked alongside cooking himself a Xmas dinner with all the trimmings.

It took me about a month to get my full appetite/energy back and after 3 months I was referred back to my local hospital and consultant and started my maintenance treatment.

The only issue I have from all the treatment I have received since diagnosis is quite bad neuropathy in my hands and feet.
My legs are numb from the knees down and I have lost feeling in both my feet which causes quite alot of problems.

Would I go through another SCT? – if you’d asked me that question a few weeks after the last one,the answer would be a definite NO.

But now even with the neuropathy issues the answer would be YES.

You will get through it!!!! BOTH OF YOU.

[twinzParticipant]

Myloma UK do a diary that is quite good for recording the details you mentioned above.

[twinzParticipant]

I have pins and needles in my hands and they always feel so cold and I am unable to write or type sometimes. My feet have suffered from PN for about a year now with no sign of any improvement. My consultant said it can take upto 2 years if it does improve. I cannot feel my feet at times and can only wear my shoes for so long as my feet / toes seem to burn and are bright red when I take them off. I am on 100mg Pregabalin 3 times a day. I have to walk downstairs with both feet placed on one step at a time.
They did reduce my medication when I first started with pins and needles in my fingers but obviously the damage was already done.
When I go for a walk I cannot walk straight at times either so hubby doesn’t let me go anywhere really on my own.
If I put cream on my feet I nearly go through the sealing as they are so painful but hey how I am in remission and very grateful.
Fingers crossed I get some relief in the future.

[twinzParticipant]

I had my stem cell transplant at the end of Nov 22 and am also trying to get Covid vaccines. It took my consultant a long time to send me my letter and I finally got it after I chased them.
I managed to get one covid vaccine on 28th June just before they stopped but am also now struggling to get anymore. I was told by the pharmacist that I may have to wait until they do the next rounds in Autumn

I have had most of my childhood vaccines and have 4 more in August ( nurse has given me them 4 at a time).
I am at the hospital again next month so going to see if they can help with covid.
Might have to mention Shingles one to nurse next time I go.
It’s a nightmare getting everything but hopefully it should sort itself out at some point. FINGERS CROSSED.

[twinzParticipant]

When I had my picc line fitted they gave me some covers to use when showering to keep it dry. They were reusable to as you just shook them afterwards and let them dry.

They also gave me a cloth cover to wear during the day.

As for SCT I was dressed for mine and I had 2 bags of stems cells and they only took about 20 min for each.

Hope it all goes well for you.

[twinzParticipant]

Hi,
I had a SCT in December and spent 20 days in hospital.
The transplant itself is ok mine only took 20 mins for each bag. I had 2 bags of stem cells.
It is the chemo that will give you the hair loss and most of mine came out during my hospital stay but I had shaved thickest off beforehand.
I found I couldn’t eat and think I only managed 2 small tubs of ice cream in total.
The thought of food made me feel sick and the nurses even tried some milkshake type drinks to build my energy up.
I also suffered fatigue afterwards and was tired when I first came out.
By the end of January my energy was back and my appetite had mostly returned though I still can’t stomach bananas lol.
My hair is growing back nicely too.
The doctors have to tell you all the side effects possible and it sounds really scary but as you’ve said Myloma is an individual illness so you may get all or some or none.
Looking back it seemed horrendous to me but I soon got over it and quite well now apart from severe neuropathy in my feet and hands caused by previous treatment.
Hope all goes well for you and remember it will only be temporary.

[twinzParticipant]

Thanks for the reply David.

I am no longer on treatment and currently waiting to hear about harvesting of stem cells.

I did mention it to my nurses and Velcade and Thalidomide were both stopped.
They cannot help my neuropathy with any medication and have advised that I have to see if it improves.

I will have a look online at creams etc but I have also heard Vic Vapour rub has been used too to help with neuropathy.

I am also trying to go a short walk each day assisted by hubby to see if that helps.

Regards

[Author]

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