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Great news Jo! You must be soooo relieved. I see from an earlier post that you are at Lister. Same here. I chuckled at 'nice chap not good at paperwork unless you chase him'. I very much suspect that you have the same consultant as me – the lovely Dr K! Tracey x
Lovely photo Debs! You've got a bit of a Kate Middleton look about you!
Tracey xx
Hiya Debs
I haven't had a SCT, but finished CTD back in August. Around July time, I started experiencing night sweats. I also started noticing hair thinning. I mentioned both issues to my Haematologist at my September clinic and he dismissed the idea of an early menopause, but did say the night sweats were due to hormones. He also said the hair thinning was a result of the chemo. I have to say I wasn't entirely convinced by his response and so mentioned the night sweats to my GP, who immediately said I could be menopausal, brought on by treatment. I had some blood tests, which confirmed this was indeed the case. My GP said the hair thinning may well be a result of a sudden menopause too.
I've only recently turned 43 and like you, although I don't intend having any more kids (I already have a 5 year old), I was pretty upset by the whole thing and even embarrassed! Nothing was ever mentioned to me that this could happen and I've since found out, that this is quite a common side effect. I can only think that my haematologist doesn't treat many younger patients and to be fair, I am always by far, the youngest patient in the clinic waiting room.
My GP has put me on HRT because of the risk of osteoporosis and Alzheimer's although I did chuckle at this and say I was reassured by the fact he thinks I'll be around long enough for this to be a concern!!:-D
I've been on HRT for 2 weeks now and the night sweats are just starting to ease off.
The good news for you if you are having an early menopause is that because you are under 40, there is a good chance it is only temporary. The bad news for me is that because I'm over 40, there is a higher probability that it is permanent.
As if we didn't have enough to contend with!
Tracey xx
Hi Clara
You don't say whether your Dad's FLC readings are still within normal range. You may remember that I am in a very similar position to your Dad – MM with Amyloidosis with not too dissimilar FLC readings at the start of treatment. I started CTD at the beginning of March, achieved complete response by the end of April (ie. Lambda light chains within normal range) and finished CTD mid August. I had my six month NAC appt and scan a week later. At that point, both Kappa and Lambda had gone below the normal range. My NAC doctor told me that had I still been on treatment, it would have been stopped or reduced, but as i had finished, it was not a concern.
Two weeks ago, I received my first FLC report after a month of no treatment at all and you can imagine my shock when I saw my lambda reading had 'shot up' from 3 to 12! Kappa was still below normal range. As lambda is the one that is the problem I was beside myself with worry and in the end called the NAC and spoke to a doctor. She said this was completely normal and they see it all the time – the body is readjusting and the immune system is finding it's 'normal' level. She said that the Lambda reading had been over suppressed. Because both kappa and lambda are still in normal range, she was not concerned that the ratio was now out of normal range. She said that if lambda continued to increase significantly at the next reading, then this may be of concern, but for now, it isn't and is behaving how they would expect.
Hope this helps, but if you are worried then you are right to call the hospital.
Best wishes
Tracey xxx
Dear Min
Thinking of you and Peter and what must be such difficult time for you both. I'm so glad that Peter is at least feeling well – that puts him in a positive position for the further treatment planned. I'm keeping everything crossed for you both.
Tracey x
Hi Wendy
I too have suffered from some ear problems since being on CTD. I've had several occasions where my ears all of a sudden feel like they are full of water and there is a whooshing sound in them. It can last on and off for 2 or 3 days at a time and is VERY annoying. I haven't had any colds and have never had this before so can only put it down to another side effect of treatment.
Tracey x
I'm so sorry to hear of your loss, Tina and hope the special memories you have of Patrick will help you through this very sad time.
Love, Tracey xx
Thanks Dai! Not sure what happened there. I did sign off as "Tracey" in my original post, but instead a random reference to "tea" appeared instead. Bizarre! 🙂
Thank you all for your comments. I feel much more positive now with the let's wait and see approach. Dai, there's a definite logic to what you are saying in that if CTD achieves a good remission and you feel well, why the need to press on with a SCT immediately? I hope you get great results with the velcade. It was good that you met that woman in Nottingham who continues to do well after velcade and Revlimid – stories like these give much hope. Jo – so glad to hear you have done so well on CTD alone. Angelina – an amazing story of how John has got on over the last 4 years and obviously one close to my heart with the Amyloidosis complication -I do hope he can get back into remission quickly.
Thanks again everyone.
Tracey x
I don't get nausea from velcade
Hi Clara
Thanks for your Dad's update – it does help to compare notes with someone in a similar situation. I've just had an appt through for my next 2 day assessment and scan at the Royal Free for the middle of August. Also had my blood results back after my first cycle of CTD – lambda free light chains have reduced from 152 to 43 so that seems encouraging! I haven't had a CT scan, but am waiting for a skeletal survey, at my request. I didnt know about bone damage until I visited this site and it hadn't been mentioned to me by any of the doctors. I got the impression that if I had bone damage, I'd know about it – ridiculous surely?!
Min – The fluid restriction is a nightmare, but it was actually the Royal Free who is directing my Amyloidosis treatment who have imposed it upon me. I'm allowed only 1.5 litres of fluid a day, which is so tough! I had a nephrology clinic appt this week and they have said that the 'odd indiscretion" is perfectly fine, which is good news as I am going to a wedding next month, which will now be much more enjoyable! Glad to hear that Peter's ankles are back to normal. I've had to up the ferusimide to 120 mg a day. Nephrologist reckons I'm carrying at least a stone in fluid – ouch! I can almost hear it sloshing around as I walk! Good to hear about your friend and their Amyloidosis – stories like these are very encouraging!
Nigel – I'm trying to be very careful with my appetite- if I put on any extra fat in addition to the fluid retention, I'll be in a sartorial wilderness. I've found that since treatment I've gone off savoury foods and crave chocolate, ice cream and fruity things so do need to be careful!
Tracey x
Hi, I'm no expert ok, but as far as know grief always comes with anger, so it's good to know you feel it. I doubt you can find any satisfying and suitable target for it, but that doesn't make it any less valid.
From what you have described it seems that your brother's death was unexpected by the family and the medical team. Do you know what happened? There may be no explanation,
Good luck
Nigel
All my sympathy.
How are the children?
Was MM the direct cause of death? Why did they take three months to diagnose? Was he receiving any treatment? These questions are pointless –
Nigel
Hi, I cycle, always have done since the age of four. I managed to get out a bit from the earliest days of treatment, but the hard winter kept me in, so I skiied instead. Since its warmed up I'm doing regular 25km outings, often 40km and an occaisonal 70km. My docotr is also a cycllist. OF course I4ve put on loads of weight whihc doesn't help and I've minor cartiledge trouble in my left knee (too much skiiing). The cycling is clearly not traumatic (I've got a lovely bike) – and doesn't hurt my fragile thorax – of course I don't push it and I don't fall off (or over when skiing). It seems to be the perfect exercise for me (though I just had a lovely walk). On my Velcade crash days (or is the Dexa downer) I lie in bed and wobble to toilet every couple hours to empty the litres I've fed into my burning body.
Bonne route
Nigel
