[squirrelParticipant]

Hi Rabbit

Thank you for your replies on my post – Much appreciated.
I see you had 6 cycles whereas I have only had 4 cycles.
You received Lenalidomide as part of your cycle but I had Thalidomide.
I had a break from medication, apart from Aciclovir, for 2 weeks before I then started the priming and harvesting process which has now been completed.
I have now been on Aciclovir only since 22nd September.
My Consultant appointment is 3rd October so I am assuming the suggestion will be for the first SCT date to be agreed.
I am assuming that I must also be in some form of remission or I would be on more medication!!
So hard to know what the Consultant is thinking!!
Glad to hear you are managing to carry on so well – I unfortunately struggled through my induction cycles. Makes me wonder if side effects were linked with Thalidomide.
Keep in touch and stay safe.

[squirrelParticipant]

Hi Rabbit
Thank you for your reply.
What does OS stand for please?
I have just had my stem cells collected and frozen last week. I was told they had to collect at least 6 million which I achieved over 4 days.
My next consultant appointment is beginning of October and it was suggested that a tandem transplant, one mid October and the second in the New Year, would be of benefit to me because of this variant.
Whereabouts in the country are you?
My consultant was very convincing this was my best way forward.
Hope you keep doing well.

[squirrelParticipant]

Hi iangray67

I haven’t been on here for a while and was wondering how you have got on.

On your last post 8th June you were hoping to be given a date for stem cell harvest and onto a SCT.
Has this happened? If it has how are you?
I am about to start the process for the harvesting of my stem cells after 4 months of induction.
Have just been given a couple of weeks without medication apart from Aciclovir.

Would be great to hear from you

Sandra

[squirrelParticipant]

I find it quite overwhelming how different everybody is when it comes to side effects and symptoms.
I seem to always be asking questions as I get so many which I cant see mentioned anywhere.
My latest being a cold nose with eye sockets that feel cold but are not! This goes on for most of the day. Again just told it will be one of the drugs!
I am also waking up early morning about 2am with lower legs that feel very irritated, nervy and won’t settle. This can go on for 4 hours or more and is extremely uncomfortable.
I have had radiotherapy to my pelvis and spine a week ago and there is now talk of surgery to pin and stabilize my hip and pelvis.
Finding it very hard to settle into any routine and I am only on treatment 1 of 2nd cycle!

[squirrelParticipant]

Hi iangray67

How are things going with you?
Hope everything was favourable on your results and you are now onto the next stage.
Interested to know especially as you are on a trial as well.

[squirrelParticipant]

Hi iangray67

It’s quite strange how it gets picked up when being checked for a PE.

I am actually on Zomorph now which I believe is the same type of medication which I take twice a day. Also Oramorph for breakthrough pain.

Interesting you are on a trial – which one is it?

Thank you for commenting I really appreciate it.

[squirrelParticipant]

Thank you Mulberry and Duclady for your comments.

I ended up in hospital for assessment after phoning the hotline.
They wanted to check me over to make sure everything was ok and nothing was really discovered so can only assume I must be one of the ones that doesn’t respond too well to these drugs!

Steroid tongue does sound very much like the reason for my swollen tongue. My husband picked it up before I did as he said i wasn’t opening my mouth to talk! It only lasted for a couple of days but wary now that I will need to take more steroids as part of the next treatment.

Duclady – How did you not respond well on Thalidomide? I thought some of my symptoms could have been related to it.

Thanks again for your comments

[squirrelParticipant]

So I have had 3 treatments so far in the first cycle. DVDT
I feel out of sorts for the majority of the time and wondered if others felt the same. I know people react differently but when I saw on here that others were continuing with work I thought I would have felt reasonably ok but I don’t.
I am very much on edge, nervy, and shaky. I also have jaw ache which doesn’t want to go away. I think my tongue felt a bit swollen yesterday.
I tried to speak to a doctor last Friday when I was at the treatment ward but no one was available!
I can’t contact my Specialist nurses directly as it always goes to answerphone message for a 48hr response or they state to contact emergency hotline!
I think it might be the Thalidomide – Has anyone else had similar issues please?

[squirrelParticipant]

Hi Mulberry

Thank you for your reply.
Knowing how others get on really helps.
As lovely as my Consultant is I feel she wants to give more of the positives.
Fingers crossed for tomorrow.

[squirrelParticipant]

Hi All

Thank you all for your messages.

Derbyshirelass – I find it hard saying I have pain but I know you are right I have to be honest with them.

Update from my appointment yesterday. 2nd May.
MRI scan, XRays, Bone biopsy, bloods etc etc all confirmed what the Consultant expected and I have multiple myelomas all over my skeleton.
So early Friday morning I will be starting Cycle one.
Not sure I really understand what to expect but going with the flow and hoping no adverse reactions to the medication.
Reality of my condition is starting to sink in now I think.
I don’t know if you can lose your hair with this treatment. I think I read it may thin out a bit?
Has anyone experienced hair loss please?

[squirrelParticipant]

Hi kh0305

It really helps to know how well others have faired after having the rib pain.
I did have hip and back pain too but the hip pain seems to have gone now.
I still have lower back pain which I have had for a few years but put that down to getting older and overdoing things. Now I know it wasn’t that!
Hoping for a treatment plan from the Consultant soon as all feels like a lot of waiting at the moment.
Sending best wishes to you and your Dad.

[squirrelParticipant]

Hi again suew1960

Thank you for your reply.
I am 64 and was fit and well until about 12-18 months ago.
I struggled with GP’s to get them to listen. I asked for a Vit D test as a lot of my symptons then seems to fit the bill. My GP was horrid and said we don’t just do these tests because someone asks!. She did do it and I was deficient. Makes me wonder if this had a part to play in my condition now!
Your induction treatment sounds the same as I might possibly be given as my Consultant gave me leaflets for Dex, Velcade and Thalidomide. She also gave me another one for Daratumumab (Darzalex) at the same time.
I had Zometa intravenously just after having my bone biopsy and given Adcal-D3 tablets to take twice a day.
I think once I know the plan I might feel a bit more in control.
I am so pleased that your results are positive and hope that it continues to be the case for a long time. Are you still taking any medication now?
Thank you again for replying
Best wishes to you

Sandra(Squirrel)

[squirrelParticipant]

Hi derbyshirelass
Thank you so much for your reply.
I too have had a load of GP appointments but only generally over the phone or online as my GP appointments are a rarity now.
I am concerned that my ribs are very delicate but the process to find out exactly what is going on or what you should or shouldn’t do is sparce at the moment. Hence coming on here.
I keep having massive pain in my ribs every so often which then eases off for a bit until the next one. You said your husband was fitted with a spinal brace – does he still have to wear one now?
Thank you for the tips as we also thought we might have to move.
Best wishes to you and your husband.

[squirrelParticipant]

Hi Mulberry
Thank you again for the lovely message.
I truly love my garden and find it very hard not being able to tend to it at the moment.
I thank you too for your lovely words some of which did make me smile.
Quality of life has always been the the forefront of my mind and I suppose I just have to be patient.
Wishing you all the best

Sandra (Squirrel)

[squirrelParticipant]

Hi Sue
Thank you for your message.
I have to admit the rib pain is what causes me the most grief at the moment. I know from an assessment completed in the hospital who did a chest XRay stated I have rib lesions but unsure if there are more elsewhere.
A full body MRI was ordered by my consultant and I am waiting the results on that.
In the meantime I had a bone biopsy which is like everyone else says ‘ was not very pleasant’ and also a Zometa infusion.
I have to wait until 2nd May before I see my consultant again.
Could I be cheeky and ask how old you are? And also did you have the intensive treatment?
Thank you again for replying and I really hope you continue to be OK.
Best wishes

Sandra

[Author]

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