[HelenParticipant]

Dear Helen
I think the side effects of the drugs are so many and varied it is really hard to work out which is doing what, I only had them for 4 cycles but they were terrible, my consolation was the lowering sflc each month, I don't know how i' d have reacted if it had not done that.
I still have shakey hands and certain foods still seem to taste wrong and my nose runs when ever I eat too, I can't concentrate as well and tire easily but managed a 5 mile walk at the weekend, first time in 6 months
The electric shock feelings in my skin and the weird breathlessness have gone and I have less joint pain now, I also don't have the feeling of doom that went with the days after the dex finished, that was so depressing. I didn't find the 4 th month any better than the first but I think I managed it better, I took the anti sickness stuff as often as prescribed and on more days and felt marginally better because of them, I took over 500 tablets in month 3 for the various maladies I was suffering and I had an extra 3 day 'holiday' of all drugs to give my body a rest at the end of cycle 3. They were going to reduce the Revlimid dose but I was very keen to maintain the drop in sflc that I carried on, I was VILE to live with…… My poor family and shortly to be canonised husband will need medals before my treatment is finished!!!
Someone here keeps saying onwards and upwards- makes me smile when I see it but it's the only way 🙂
Helen

[helenpageukParticipant]

Hi Bridget,

Hope you had a good weekend. I am afraid I have another question for you. Mum has had two blood tests; one on Friday and one today (Monday). Each time the liver function result has been 'of concern' to the doctors. They had told her to stop taking all medication and want her to go to see them tomorrow to have further tests and a liver scan.

I am really concerned and wondered if you have heard of anything like this before?

Thanks in advance

Helen

[brochoParticipant]

Hi Helen I am not sure I am going to be much help on this one What I do know though is that the very toxic medicines we take as treatment can be harmful to liver and kidneys as they try to flush it out It may be your mum needs a short break to give her liver time to recover , I would imagine they are being very cautious and doing a scan will give them answers Sorry I cant be more help Helen please let us know how your mum gets on love Bridget x

[helenpageukParticipant]

Thanks Bridgette. I must keep reminding myself that the medication is strong stuff and may take mums body a while to adjust to. It seems crazy that she is taking so much of the stuff as she has always been very anti medication. It is such a shame that she has had this 'blip' following the good news that her PP level reduced to 5.5 after the first cycle.
Every day I wake up and hope and pray that today is the day that they find a cure which means we can get our mum back to her old self and enjoying life.

Anyway, how are you doing?

Take care Bridgett and thanks so much for replying

Best Wishes

Helen xx

[eveParticipant]

Hi Helen
It is Tom,On wards and upwards,he has not been on for awhile,so it is either his cucumbers or he is on holiday:-)
i know what you mean though ,he just makes you smile.Eve

[helenpageukParticipant]

Hi Helen and Eve,

Hope you are both well. Helen are you still heading in on the 16th for your SCT? Hope they managed to find you a bed.

Mum is not very good at the moment. She has to go into hospital today becuase her liver function test was of concern to the Doctor. They have taken her off all meds while they find out what is up with the liver.

It is so scary. I wish so much that things could go back to normal.

Take care both xx

[brochoParticipant]

Hi Helen I hope your mums doctors will help you feel less anxious after her appointment today Unfortunately once myeloma appears it does change things , especially in the beginning when everything is new and scary. I promise you it really does get easier as you see your mum coping with various drugs and you start to know the names of all the treatments Life will get back to a normality , it wont be exactly as it was before but its not all high drama and fear Try and take things a day at a time , dont look too far ahead and worry about it . I am sure your mum will be worried about you too and together you will get through these early days Dont forget us mums are tougher than you think !!! love Bridget x

[CarolBradley1Participant]

Hi -whinge away! sorry your having such a poor time of it. I am nearly at the end of month three of this latest round and am on 25g and feeling pretty fed up. Regarding the sweating no I don´t have that but do have rashes and sheer exhaustion – I am now only managing 4 hours before I have to lie down again for a few hours rest and trust me I`m usually a really busy type also have quite a lot of pain.

Perhaps it will take a while for you to settle down now that they have reduced your dosage my specialist says it does have quite a long shelf life so stays in your system quite a while.
I constantly have a tickly cough which keeps me awake and a feeling of pressure in my ears as if everything is inflamed – how wierd!
Lets hope we both feel better soon – I think they are going to offer me a maintenance dose soon but I`m not really sure. Hope it gets better though as this is hard work.
Take Care
Carol xxx

[CarolBradley1Participant]

Hi Helen
Glad to hear your feeling a bit better slowly and congratulations on the 5 mile walk – you must feel as if your getting somewhere now.
Do you know what causes the stiffness in joints etc. – mine is so bad I walk like a penquin if I have been sat down for longer than 10 mins! Even my finger joints are stiff and painful.
I think Tom onwards and upwards has gone to visit relatives so lets hope he has a good time and comes back nice and refreshed.
Take care of yourself
Love Carol xxx

[HelenParticipant]

Dear Carol
I was on the revlimid as induction ( RCD) in the trial and was stiff as a board for 3 months then I seemed to loosen up though still felt very sick and weak in the 4 th month. I had several chest infections, if the cough keeps up perhaps you should report it? I found the stem cell collection and the zometa all cause me lots of pain and stiffness even my fingers too but wore off when I walked last week. I don't think it is as bad as it was before the treatment started, but I will let you know as time goes on:-)
Helen, bridget and eve I still head for sct on Monday 15th i hope, have been to France for a few days while I can and will be having as much fun as possible over the weekend, someone else will have to do the cleaning, because even though we mums are tough( as old boots in my case) I am leaving it and will get back to it in the future……….maybe!
Helen

[CarolBradley1Participant]

Hi Helen
Thanks for the update about stiff joints and sickness etc. Sounds like you at a similar point of treatment to me – I have just finished my third month of Revlimid.
Glad to hear that things might be settling down over the next few months and I might be able to get a bit more active.
Have a good weekend
Love Carol xx

[HelenParticipant]

Hi Carol
I have sct next week
Helen

[brochoParticipant]

HiHelen good luck with your sct tomorrow . It is definitely worth doing and hopefully you will get a long period of remission and no heavy treatment ( thats the best part!!) I am sure you are well organised but just a thought take your own cup or mug with you When you are feeling a bit queasy tea in a plastic cup just makes it worse !! I hope you can let us know how you are getting on Onwards and upwards ( as Tom would say) Bridget

[CarolBradley1Participant]

Hi Helen

In that case we are doing things in a slightly different order as I have had my sct (which by the way has left me now with 0 yes zero paraprotien level!) and am now just finishing my 3rd cycle of Revlimid.

They seem to be so well practiced in this procedure now that I am sure everything will go smoothly and know are in good hands so this is the week to try to relax indulge and pamper yourself!

Nearly forgot – losts of people are finding that if they suck ice cubes, lollies etc whilst they have their Malphalan they don´t get some of the side effects like sore mouth etc. – worth a try I wish I had known about it. We shall all be thinking of you this week and sending air wave best wishes and hugs.

Lots of love
Carol xxxx

[HelenParticipant]

Hi Carol and Bridget
Will take ice and mug! All tips very welcome:-) thanks for your contact only hope they have beds!
Helen

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