Hmm, can't seem to change my picture even though it says I have done! Oh well…look out for the bald head instead…..
Hi guys.
Just a quick update. My specialist nurse sent off hormone tests for me last week. 1 came back suggesting that I was definitely going through the menopause and 1 came back suggesting either I was, or I am mid-cycle. Great. No real answer! And I won't know about the mid-cycle thing as I'm on the coil so don't get periods anyway.
Anyway, I've asked to be referred to a gynaecologist as my hubby used to sell HRT drugs and doesn't want me on them, but knows there are implications too.
Scott, don't feel too bad for me….I think the flushes are minor in comparison to some people, and to be honest, I think the neuropathy isn't half as bad as it could be, so I'm trying to think myself lucky!!
Helen, the hair is doing well now 🙂 It is finally starting to grow and I have quite a lot of fluffy hair on top now! The sides are still short but my eyelashes and eyebrows are possibly getting better too! So there's hope – I'm about 90 days post transplant now.
Tracey – it's good to hear that doctors are worried about old age risks for us 🙂 Maybe we'll get to live to see our 5 year olds get married after all 🙂 Wishful thinking and positivity all round!!
Thanks for all your comments – Dai, hope finishing the velcade stops your sweats!!
Debs x
It's lovely to hear you going off on a tangent! I know Piddington as quite a lot of my friends live there. It's all a lovely area and I feel so glad we moved here 8 years ago from London 🙂 We had our 7 year old at High Wycombe like you….Our 5 year old, Sam, was born at home – an A40 baby!!!
Love
Debs x
Hi Dai,
I was on zometa but have never (touch wood) experienced bone damage to date. I'm off it at the moment as I'm still only 2 months post transplant, but I expect to be put back onto it in the next couple of weeks.
Sorry if that blows your theory out of the water!!
I am with Gareth Morgan so he may be biased….I think he was responsible for the trial that recommended zometa above other drugs.
Take care
Debs x
Well done Dai….I am so pleased for you.
And as daunting as it is, go out there and live life to the full. Hopefully with your positivity, you'll get a year or more of remission and I wish you all the best with that. Drug free time is a blessing once you have started isn't it….
Take care
Debs x
Hi Etta's husband (do you have a name? :-))
I hope she's got over the flu symptoms and that they were only from the zometa….hopefully she'll only suffer the first time too.
With regard to staging, I've never been told. To be honest, I've never asked as I've just focused on my pp levels. I think it is pretty normal so I wouldn't worry – it is just another label and it's bad enough to have the MM one so I wouldn't chase for it?
Take care
Debs x
Just thought I'd give you a quick update after my appt with the pain clinic. It is quite a frustrating story!!
I went in, and after listening to him talk over me constantly, he decided to put me onto pregablin as I had been on it by mistake pre-transplant (along with tramadol and morphine – not meant to be given together!)and it had worked then. I explained that I had been taken off it and put onto gabapentin because my GP had refused to give it to me as it was blacklisted in our area. He didn't listen to me.
He then wrote the prescription and I questioned why they had only done it for 14 days when my appointment was going to be 6 weeks away. He said that my GP would have to issue the rest. I reminded him that I had been turned down before and he checked with his boss and came back and assured me that it wouldn't be a problem. I then questioned that he had put 150mg when he wanted me to titrate and start with 75mg. I said that last time my nurse had done that, I hadn't got any tablets at the lower dose and so had needed to go to my GP (I live 1.5hours away from hospital). He said that pharmacy knew what they were doing. I shut up.
Anyway, I got home that night and they had given me the 150mg tablets with no 75mg tablets. What a surprise! Why didn't I check in the hospital…why should I have to?
So I called the hospital the next day…they apologised and said they would fax a letter to my GP so I could get the 75mg tablets. Guess what….that evening I got a call saying my GP had faxed back refusing to issue the pregablin as it is blacklisted. DIDN'T I TELL THEM ALL THIS IN ADVANCE?!?!?!?
Anyway, the long and short of it is that we now have to apply formally to our PCT to issue the drug (despite NICE stating that it is a first line drug!)..god knows how long that will take. In the meantime, I have been given nortriptylene (or however you spell that) to take in the evenings….perhaps there is some improvement….
Sorry for the rant….needed to get it off my chest. It is so wrong that when people are in pain, they have to fight these things. My situation isn't too bad in comparison to some, but I can only imagine how those people must feel. On this basis, my husband is now writing formally to the PCT to challenge why they have blacklisted a drug that NICE advocates. I'll try to remember to update how it goes!!
Rant over
Debs x
Hi Keith,
I would check with your hospital, but when I had a rash around my neck and collarbone post SCT, my consultant said it was GvHD and that it was a good sign that the transplant had done its job.
Mine has just about stopped now….I am 2.5 months post transplant.
Hope it calms down soon so the swearing can stop 🙂
Take care
Debsx
Hi Wendy,
I hope you're doing ok post transplant….it's hard in those early weeks so bear with it and don't rush to getting back to normal. It's really important you listen to your body!!
As to the mini Allo, you could post on the Under 50 site as Ian has recently had one of those….in June I think it was. He is doing well so far.
That must be really hard to have to think about it so soon after an SCT – I wouldn't want to have that decision now and I am 2.5 months post transplant. Have you thought about getting a second opinion? YOu could ask a hospital like the Royal Marsden – given it hasn't been mentioned to me, I would assume they aren't as pro the whole idea, and that might give you the opposite side to the story??
Just a thought.
Take care
Debs x
Hi Terry,
Just to say that velcade definitely isn't a last resort. I was diagnosed in 2009 and started treatment in 2010. I started on revlimid but that stopped working quite quickly and I was put onto velcade.
It worked really well for me and brought my pp down from 28 to 4 at which point I had an SCT. The only thing I would say is please listen to what Bridget said about neuropathy. I had it and didn't think it was too bad…I kept going because I thought I should wait till it was bad enough to stop. I then stopped but it got worse, and 4 months on, I still have it. As Bridget says, they have options if you do get it so tell them and be honest with them.
I really hope the velcade works its wonders for you
Good luck
Debs x
Hi Etta,
Welcome to the site….sorry you've had to join us.
I reacted to zometa the first time I had it – felt very flu like with bone ache all over, hot and cold etc. But it only lasted about 24 hours and since then, I've never had it.
But the tiredness etc is probably due to the CTD….my best bit of advice is to listen to your body. If it tells you to stop, do that. It is hard to do sometimes, but I really believe it helps you to deal with the treatment.
Good luck with it all and keep posting if you have any questions..we're all here to help you.
Debs x
Hi Helen,
I've been a bit different to you…I have told the world what I'm going through – stemming from when I did the Yorkshire 3 Peaks to raise £15k for MMUK. I sort of had to tell my story for that.
So, no, I don't wear anything on my head at all! Very refreshing and people assure me I have a nice shaped head (?!).
My SCT was on the 18th July (2 years to the day from my diagnosis)so I am a bit ahead of you and believe me, every week makes a difference. Two weeks ago I was hardly capable of anything and couldn't imagine coping with the early morning school run….now it doesn't phase me 🙂
Up for the hair competition though I think everyone else might win…my sister came today and thought I had shaved it again since the transplant – I haven't….it just hasn't grown at all!!!
Debs xx
Hi Helen,
I never bothered with a wig I have to say. My mum bought me one (over £200!!!) as I was worried how the kids would react, but they were brilliant and I just found the idea of it too hot, and not me. When they didn't react to the hair (other than saying it felt like a hamster :-/ )I never bothered wearing it, and now find myself apologising to my mum for having wasted so much of her precious pension money!
My hair has hardly grown since I came out but I was told it could take a few months and that it would then grow around 1cm a month….doesn't seem to be coming back curly yet so am keeping fingers crossed. Sadly the grey is still there!
Does anyone else find it still keeps falling out even a couple of months post SCT??? Not loads but if I rub my head loads of little bits come out!! Urgghh!!
Debs x
Hi Aileen,
Sorry to hear of your diagnosis but really pleased that you have found this site. I hope that it helps you along this journey that you find yourself on…and that we can help you too.
Ask any question…none is stupid…we've all been there no matter how much it seems like we use all the jargon…sadly we've learnt it over time.
Take care
Debs x
Hi Sandra,
I was told to be very careful and spent the first few weeks adhering to that advice. But with 2 young kiddies, I can't avoid being out and about, so I have to say, I haven't been so careful since. I go shopping at the normal times etc. I sort of forget that I am ill still and that my levels are low!!! I should probably be more careful than I am.
But I do make sure that people who are ill don't come near me now…to be honest, I think that will continue for good….I can't avoid sniffles, but anything more serious, I would ask people to stay away as our immunity is compromised for life.
All in all I am pretty good 2 months post transplant. I can see the light at the end of the tunnel! I still need rest and sleep for an extra couple of hours most days……I have to get up at 7.30 for the school run, but normally fit a sleep in after that. And the docs say that is normal for the first 3 months.
If I'm honest the first month at home was hard as I wanted to be doing so much more than I could do. But now I have learnt to compare how I am now to how I was 2 weeks earlier…by doing that I realise that whilst I still can't do everything, I am improving day by day.
If you want the nitty gritty of how it all went for me, I wrote a blog (and still do!) at http://www.debsjourneywithmyeloma.wordpress.com. But it really does give the bad as well as the good. If you do read it, PLEASE remember that now I feel good and that sometimes you have to go through the pain to get the gain (cliche I know!).
You'll be fine and once you're out the other end, hopefully you will have years of MM remission to look forward to 🙂
Take care and feel free to contact me if you want any info!
Debs x
