[NettieParticipant]

Thank you Brian, I was thinking I should say yes. I was on an insurance comparison site and as soon as I answered that question they said they couldn’t provide me with any quotes so I guess I will try the companies direct.

Nettie

[NettieParticipant]

Hi
Just a quick question regarding travel insurance – when faced with the question “have you been given a ‘terminal prognosis’ how do you answer? I was given a terminal prognosis of 5 years when I was first diagnosed and that was over 11 years ago.
Nettie

• This reply was modified 8 years, 6 months ago by  Nettie. Reason: spelling mistake

[NettieParticipant]

Hi Sarah
I agree with Annette, I would suggest your Mum gives it go. I started on 25mg and am now down to 15mg as some of the side effects were not particularly pleasant but everybody reacts differently and until she tries she won't know. It is probably a case of getting the dosage right for your Mum. None of the side effects I encountered were unbearable by any means and they diminish with each course.
Good luck to your Mum, I really hope she makes it to Christmas and a long way into 2014.
Love
Nettie x

[NettieParticipant]

Hi Jill
This is an interesting question as I have been on Revlimid + Dex since August last year and it has the opposite effect on me!
I started on 25mg of Revlimid for 21 days with 7 days rest + 40mg Dex on days 1 to 4 of each cycle. I am now on 15mg Revlimid for 21 days and 20mg of Dex for days 1 to 4 of each cycle. I have never taken Cyclophosphamide.
Having always been very 'regular' it was a worry when I suddenly could not 'go' for two or three days at a time and experienced bad tummy cramps. I tried to treat this naturally by eating more fruit and veg and drinking pints of water a day and that has helped but the drugs have never caused diarrhoea. Maybe the drugs affect people differently as does MM or maybe it is the Cyclophosphamide?
Whenever I have experienced diarrhoea in the past my GP has always prescribed loperamide it is very effective.
The first three cycles of Revlimid were not pleasant and I did have many of the side effects noted on the list but now the main side effect is fatigue but I do still have days when I am constipated.
I do hope your Mum is able to get some relief from the side effect she is experiencing – they are 'nasty' tablets but worth persevering with as, in my case at least, they do work as I am in remission once again.
Best wishes
Nettie x

[NettieParticipant]

Hi David

Happy New Year to you!

I suffered with really bad leg cramps at night when I started on Rev + Dex. I was prescribed quinine tablets but they caused severe headaches so I stopped taking them. I do drink a lot of tonic water but I don't like too much salt in my food (usually buy plain crisps with the 'little blue bag'!).

The only real relief from night cramps came from wearing long (up to the knee!) wool bed socks! The condition has improved since the dosage of Dex was reduced but I do occasionally get cramp if I leave the bed socks off – worth a try?

Best wishes,
Nettie

[NettieParticipant]

Hi
I have been through two SCTs and would recommend you going for the second one. As you may have realised, this disease is very individual, everyones experience is different.
My first SCT was in 2005 and I achieved a 'good partial' remission until 2009. Fortunately they were able to harvest sufficient cells to freeze enough for the second transplant in 2009 so I had no problem with trying to harvest a second batch.
The second SCT was a far more pleasant experience and I recovered very quickly afterwards and achieved a full remission which lasted until August this year.
I am now on Revlimid + Dex and a third SCT was never offered, I am not sure if a third has ever been an option but if it was, I would go for it.
I was told from the beginning that a second SCT was not likely to last as long as the first but as you achieved 9 years in remission first time round you stand a good chance of having several years if you go for a second.
This is only my opinion and it is what I would do if I were in your place. As I said earlier, everyone responds differently and it very much depends on what stage your MM is at now. It has to be your decision and one that you feel comfortable with.
I hope a few more 'second timers' reply with their experience so that you get as much advice as possible before you make your decision.
Best of luck with whatever you decide.
Nettie x

[NettieParticipant]

Hello Marlene
I went on the Myeloma X Trial in 2009 when I relapsed the first time following my first SCT in 2005. I tolerated the PAD chemo very well and as I already had enough stem cells frozen from the first SCT did not need to have them harvested again which can sometimes be a problem if you have already had one SCT.
Although I was told the selection of treatment for the Trial was random I did make it known that my preference was for a second SCT rather than the Cyclophosphamide (mainly because I had four years in remission after the first) and fortunately that is what was selected for me.
My first SCT was horrendous but I sailed through the second one and remained in remission until August this year. The Trials Nurse was wonderful throughout the whole process, and is still following up on my progress.
This is just my experience and because of it I would always recommend going on the Trial. You can pull out of it at any time and this will not affect the treatment you receive in the future.
Good luck with whatever you decide, keep us posted!
Nettie

[NettieParticipant]

Hi David

I have a very similar history of urinary tract infections being the first indication of Myeloma. When I was first diagnosed it was because of these recurring infections that my GP heard the alarm bells and sent me for tests.
Each time I have relapsed the first sign has been a urine infection and I have had two this time so was not at all surprised when my blood test showed a rise in PP. I have also had a chest infection for the past three weeks but that was following on from a cold given to me by someone too selfish to tell me she had a sore throat and had been sneezing for days because she wanted me to help her move house!!!! ggrrrr!!
The thrush is usually a side effect of the antibiotics and comes after the infection has gone but is just as unwelcome as I am sure you will agree!
Fingers crossed that your PP levels are reasonable – mine had only risen from 5 to 7 but it was a steady increase so after lengthy discussion I opted to start treatment before it had a chance to take hold.
Keep us posted,
Best wishes,
Nettie x

[NettieParticipant]

Hi All

Same question as before – has anyone heard from Dai? did he manage to walk his daughter up the aisle?

If you are looking into the forum Dai, I hope you are getting on ok and putting up your best fight against this awful disease – we miss you!

Nettie xx

[NettieParticipant]

Thank you all for your comments. I shall stay away from our local pool but hope to get back into the water if the sea is warm enough next summer! I agree that the Dex factor makes it very difficult to know when there is an infection on the way especially as I do not feel particularly well at any time now I am on the Revlimid!!
Nettie

[NettieParticipant]

Hello Dai
I am so sorry to hear you have been through so much lately. Like you, I was totally devastated when we lost dear Bridget and did not visit the forum for quite a while. When I did return the first post I read was to hear that Stephen was also gone.
Now that I have relapsed I do visit more often and today your news has also greatly upset me but you are a fighter Dai and I am sure you will win this one and proudly walk your daughter down the aisle.
Keep fighting and stay positive, we are all thinking of you 🙂
Love Nettie

[NettieParticipant]

HI Penny
Your post is very reassuring. I am about to start cycle 3 and I am still getting just about all the side effects – especially the cramp!!! I had never had cramp in my hands before, really weird!:-/
I have tried quinine but they give me bad headaches and no one has ever suggested calcium tablets. I will ask my haematologist for some on monday.
I am so pleased things are calming down for Andy now that he is on cycle 4 – it gives me hope 🙂
Nettie

[NettieParticipant]

Hi Tom
The L'Oreal oil would give your head an 'Extraordinary' shine!!!!!! 😀
Nettie

[NettieParticipant]

Hi Jen
Thanks for this tip, I have bought some L'Oreal Extraordinary Oil and it is great. I am also on Revlamid and Dex and my hair has suffered but it is beginning to look much better already. The oil smells devine too!
Nettie

[NettieParticipant]

Hi
Have you tried the Evolife products that are designed especially for people with cancer? They sell a product called Evocapil Shampoo which may be worth a try. The Evonail is excellent for brittle nails but I have not used the shampoo yet but as I am also having similar problems with my hair I will order some and let you know how I get on with it.

http://www.farmaline.co.uk/health/order/evocapil-shampoo/

Nettie

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