[lorraineyParticipant]

Hi everyone,

I'm not sure if you remember or not but my Professeur took me off Revlimid 2 months ago to give my body a rest after being on it for 18 months. It finally put me in remission after a year but I suffered side effects quite badly hence the break. My pp started rising again in January albeit slowly but was very disappointing and I was really concerned about stopping it. Well I am in absolute shock because i've had 2 blood tests since being off it and they have got better and better. My pp is now untraceable and all my blood counts are within normal range except my red count which is slightly low but nothing like it was when on the Revlimid. I also feel very well in myself, better than I have for a long time! I don't have any of the side effects i.e cramps, neurpathy, pains etc and have lots more energy! I am having an MRI next Tuesday because of pain in my back which i've had all the way through but even that isn't as painful as it was. I go to see my Professeur at the end of this month and it will be interesting to see what he makes of it all! As I said i'm in shock because it's not what I expected to happen at all! I was on 25mg and without Dex.

Just thought i'd share this good news with you all, and as already been said it's amazing how these drugs affect us all so differently!

love n hugs

Lorraine x

[GillParticipant]

Lovely to hear some good news Lorraine. So pleased for you Gillxx

[DaiCroParticipant]

I agree with Gill… good news is in short supply at the moment so your news is most welcome.

I think that sometimes people are reluctant to post items of good news, remissions, successful treatments etc in case it is deemed to be crowing or being insensitive when others are going through the mill or just starting their journey.

Personally I think we all need to see the success stories… it shows that it is possible to achieve good results, remissions and other periods of reasonably good health… if not with one treatment then with another.

Good news? Bring it on… and give us something to strive for.8-) 😀 🙂

Dai.

[MikeBParticipant]

Hi Helen

Sorry to hear of your Mothers diagnosis. I think from your post that your Mother is in the first cycle and has just got through the first four days of multiple Dex tablets each morning. I am on the RCD trial and just at the end of cycle (month) 4 and have to say that those four days on Dex, twice in each cycle, have been the only ones that have been unpleasant. The details of how it effects each individual are different but if your Mother is concerned that the side effects are either worse than she was warned or are difficult to cope with, she should contact her consultant. I did have the same symptoms as your Mother in the first few cycles except for the tiredness. It had he opposite effect and I became the Duracell bunny – like I said it effects every one differently.

If you're in doubt, speak to the consultant. I hope this helps and wish your Mother the very best through the rest of the treatment.

[helenpageukParticipant]

Thanks for your reply Mike, I must admit that the whole thing is a bit of a massive learning curve hence all the questions!! Mum took her second lot of 20 a day tablets for four days last week. To be honest, when she is on them, she seems much brighter and like you, very hyper!! After the four days she seems to be incredibly tired and no way near as bright. I am guessing that this means that she is still in the first cycle? She has had two blood tests since the start and she has to go to see the specialist and trial nurses on the 27th so fingers crossed the pp level will have decreased. They will decide then what the next stage will be.

I went with mum and dad to the hospital yesterday for her first and only dose of radiotherapy. The oncology department was pretty scary to be honest and really 'brought it home' to me, exactly what we are dealing with. It was also very frustrating as she had driven to Cheltenham (about 25 miles from home) only to find that the machine had broken! She has another appointment booked in for next Tuesday so fingers crossed that the radiotherapy will help to reduce the pain in her lower back and rib area. Have you had the radiotheraoy at all and did you find it worked for you?

How are you finding the RCD trial? I do hope that your body has responded positively.

Thanks again for replying. It really does help me. I make sure I pass on all the info to mum as she is not keen on joining the forum.

Take care

Helen

[helenpageukParticipant]

Hi again folks.

Mum has come out in a rash on top of her arms and on her tummy. She finished the first cycle of the RCD trial last week. These things always seem to happen at the weekend when no trials nurses are working 🙁 Is this rash that she is experiencing common and do you think that we should be contacting A&E? Thanks all xx

[HelenParticipant]

Hi Helen
I've been diagnosed for 5 months now and had 4 courses of revlimid on the myeloma xi trial, it has been an emotional nightmare and I have only just found the energy to even look for, let alone contribute to, the forum. But I'm doing ok and on target for sct next month.
I had no rashes with revlimid but suggest go to hospital for advice. I have been in and out like the proverbial 'fiddlers elbow' over the last few months, you need their reassurance.
Helen

[helenpageukParticipant]

Hi Helen.

Thanks so much for the reply. I am sorry to hear that you have been through a tough time of late but pleased to hear that you are on track now to recieve your SCT. Have you got an appointment booked yet? I wish you all the best and please let me know how you get on. I will be thinking of you.
Mum has been diagnosed now for two months and has just completed her first cycle. She has to go in for an appointment with the consultant on Wednesday to see if the drugs have taken affect at all yet. Fingers crossed that it will be good news.
She called the trials nurse this morning about the rash and they said that it was fairly common with chemo.
Mum is having radiotherapy tomorrow morning so hopefully that should help to relieve pain in her ribs and back.

All the best wishes for you Helen. Do keep in touch

Helen x

[HelenParticipant]

Hi Helen
Thank you I'm booked for 15th if there is a bed free, our unit is very busy at the moment.
I have had a very different course to that of your mum by the sound of it, I had an early diagnosis as I was found to be very anaemic with joint pains and have no obvious bone or kidney problems but the treatment is all a bit arduous and we all react differently . I was so angry at the beginning( actually, I'm still angry) and seeing how many tablets we are expected to take was dire. I still can't understand why dexamethasone can't be made in a larger dose- after all they make 10 mg tablets for horses!!!! I had a croaky voice, very tired, lots of ear wax( what a surprise that was) , constipation alternating with diarrhoea, thinning hair but most of my joint pain was better. My appetite was poor and I struggle to drink all that they advise.
You don't say how old your mum is. I'm 56 and my children are 25 and 21, they've found all this very hard to deal with especially the high energy dexamethasone days followed by the very down days afterwards. My husband is turning into a bit of a saint with putting up with my bad behaviour! But I'm close to being 'normal' again now. Keep your chin up and hope she feels better soon.
Helen

[helenpageukParticipant]

Hi Helen

Fingers crossed for the 15th. I will be thinking of you and sending lots of positive thoughts as I do with my mum every day.

Your symptoms sound very similar to mums. She has had the croaky voice, is very tired (especially after about 5pm ish and constipation. She has been taking a packet mix of something to help with the constipation however this seems to have the opposite affect. It is unfortunate that it is an all or nothing situation.

Mum also has the 'dex highs' and seems almost hyper for the 4 days on dex and then extremely tired when she stops. I know that mum had a bit of an issue with taking so many tablets at first, especially as she is usually so anti tablets and is usually 'fit as a fiddle'. I suggested that she put the 20 tablets into a yoghurt after advice from a friend who's mum also has Myeloma.

Mum has her radiotherapy session tomorrow and then has to go for her first consultation with the consultant on Wednesday to find out if the first cycle of chemo has had any affect. Do you mind me asking how many cycles it took until your paraprotein level reduced?

Mum is 64 and I am 29. I also have a 28 year old brother. I must admit that the diagnosis was a huge shock to us all. I dealt with the news by reading up as much on the disease as possible so I know what to expect and can be there for mum and try and understand what she is feeling by going on sites like this one and reassuring her that she is not alone.

My brother did not take the news too well at first and was extremely quiet at first. He is a very 'closed book' however after lots of chats and reassurance, he seems to be a lot more positive. If ever your children fancy a chat I can let you have my personal e mail address if that helps. Sometimes it is good to talk to someone who is in the same position.

Anyway, keep going and remember that there is light at the end of the tunnel.

Best Wishes

Helen

[HelenParticipant]

Hi Helen
The drugs are really hard to get used to, I'm glad I only had a few months- I was really responsive to them and my sflc dropped from 750 to 11 at the end of the fourth, the pp level went from 5 to 4 and has been untraceable since, and my anaemia resolved quickly, in fact I'm probably physically better than I have been for about 5 years apart from the side effects of the treatment.
My children are maintaining a ' business as usual approach' to it all now and they all just stand by quietly when I start raging about the injustice of it all. I will tell them of your offer, it is very kind of you, and no one really knows when they need help. I have been a 'read all about it' person since d day ( diagnosis!) and find it the best way for me but I know that's not for everyone, I know someone who only wants to know the barest minimum and there will be everything in-between.
I joined the forum because I could not find out what side effects to expect after the stem cell collection as I wasn't expecting any more than I'd experienced with the gcsf but I was floored by the continued pain headache and diarrhoea which lasted about 10 days.
I really hope your mum feels better after the radiotherapy, once the pain is under control it does get a little easier. Be brave for her.
Keep in touch
Helen

[helenpageukParticipant]

Hi Helen

Really glad to hear that you responded so well to treatment. I hope so much that mum is the same.

She had her radiotherapy today and I think that it has hit her pretty hard as she seems to be in more pain now and went straight home to bed. The radiologists have said that her pain may get worse before it gets better so I hope that she will feel better in the morning just in time for her results from the first cycle! Talk about horrible week!

Take care and all the best for the 15th

Helen

[HelenParticipant]

Hi Helen
Hope today goes alright, fingers crossed for your mum, I'm going away for a few days today before the next hosp visit next week.
Stay strong
Helen

[CarolBradley1Participant]

Hi,
Wow, I am so pleased for you, what a fantastic result. You have really encouraged me as I am at present on Revlimid (without dex)25mg and not feeling very well with it but if it works it´s worth it. Do you think they might reduce my dose – does the paraprotien have to be at 0 do you think?
Hope everything continues to go well and that you are feeling much better soon. Carol xxx

[CarolBradley1Participant]

Hi Loraine
So pleased to read of you lovely, if unexpected news. How lovely for you and thank you for telling us as we all know that any good news spurs us on. Hope everything continues to go well. Carol xxxx

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