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Hi Lynne,
I am sorry you have not had a reply. Where indeed do you start? Whilst I cannot advise you about your husbands condition I would just like to say that I too am going down the AMY path with LCDD- Light Chain Deposition Disease My kidneys are affected & I feel lucky not to have any other organ involvement yet. I am sorry they have found Amyloid Deposits in so many of his organs. I too have now attended the Royal Free for 2 appts six months apart to have SAP Scans, ECGs, walking test, etc. etc. . He must be feeling very poorly, and I wonder why on earth this hasn’t been picked up before now. Whilst Myeloma is very rare, Amyloidosis & LCDD are even rarer- yet all come under the same umbrella. I have just finished my 6th cycle of Velcade, Cyclo & Dex. Yes its been tough but I have got through it, and am now awaiting discussions for a SCT. Have the Royal Free discussed an SCT with you both after the chemo treatment?
The Royal Free are terribly efficient. I feel very lucky to be under their care, and it gives me confidence for the future as should Amyloids deposit in my organs- I am under their radar as indeed is your hubby. I sincerely hope you also have a proficient local consultant.
Sadly I have yet to actually connect with anyone else who has LCDD. But as it all comes under the same umbrella I read and educate myself as much as possible in all areas- LCDD, Amy, Myeloma. I have watched some extremely informative videos on the Myeloma channel. Afterall I may develop any of these in addition to LCDD. I hope this helps, It is a very difficult/frustrating journey- accepting the diagnosis, coping with the treatment BUT you will eventually reach a calmer place. Another Myeloma buddy advised me to break life down into chunks. I find this helps, I no longer feel able to plan ahead, but try and deal with how I feel on a morning/afternoon basis. I guess I now live in the present and take pleasure from the small things in life……..
All the very best with your husbands treatment, Sharron
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Hi Helen.
I’m having a Dex morning! A new one for me. So I’m nosing around on here to see how things are progressing.
So now the wedding is out the way the move is back on. The grass doesn’t have chance to grow under your feet! Have you somewhere in mind to move to? Have you already mentioned it and my chemobrain has forgotten it? lol
A holiday home too. That sounds a great idea might even suggest something like that to Steph since we’re creatures of habit going to regular places. Have you somewhere in mind? Though I’m determined to keep our Greece trips going as long as medically possible. Are you planning on buying a holiday cottage outright or a share in one? Hope I’m not being too nosey 😉
Ok back to things medical. I’ve still not heard from the Professor I guess I’m not on his radar yet. Though my consultant says she’s pestering him. I see what she says when I se her in April.
London is a long way to travel for a trial! I thought Nottingham was going to be a trek when the Prof. mentioned trials to me in 2012. How were your last bloods?
Wowzer it’s 9am already guess I’d better get moving drugs to take, breakfast to eat and believe it or not dinner to prepare. Thankfully I’ve got plenty of anti sickness drugs lol.
Hope everything is ok.
Every day is a gift.
Love Andy xxx
Sorry to have dropped off the radar for a while. My time in hospital post-SCT was much harder than I had expected.
I felt very unwell at times with a swollen mouth (but not sore), very sore throat and oesophagus meant I couldn’t eat and diarrhoea meant I didn’t feel like eating. For reasons unknown I had my dreaded hiccups back (normally comes with steroids), my temperature went up to 37.7 and my blood pressure down to 90/60. The nurses dealt with all of my issues but we never got on top of diarrhoea.
I’ve been home 3 days now and although I still have no appetite, my sore throat is very gradually feeling better, hiccups have gone but diarrhoea is still an issue. I’m having a full review on Thursday so I’m hoping for some good news about my blood recovery.
Hi Jan
How are things with you??? How is the treatment going,you are another one like Princess Fiona who has gone off the radar a bit!!!!,or is it me not looking into the site as much!!!!
Thank you for the connection recordmenow,I have looked at it,but do not know if it will happen,Slims not one for expressing his feelings about anything,so I have not spoken to him about it,watch this space you never know!!! I can see it could be a comfort to the person left behind.
We have both taken the attitude in the past,on all are travels we have never taken many photo,s that the memory,s belong to us and do not feel the need to share,or bore the kids for that matter!!
I do realise he is thinking about all the things he will miss,he would have loved to go back to NZ,so NZ is coming to us,Kiwi grand kids and daughter and husband coming over.so may be I can get a bit of a video going then,
Let me know how you are Jan?? How is your treatment going and what are the plans?? Love Eve
HI, it’s Chris here from Taunton. A few of you may have read my posts last year, but I have been off the radar for a while as I have been back to ‘normal’ life and not thinking too much about Myeloma.
Lena has told me about the re-vamped site, so I am having a look around at a few new members of the ‘club’.
I had my stem cell transplant in October/November last year, and I have now been drug free since May. I get a few aches in my shoulders and back if I overdo it, but generally feel really good, and fully back at work.
I am having 3 monthly checkups with the consultants at the Beacon Centre at Musgrove (next one next Friday), and a monthly top up of Palindramate for my bones but have given up the weekend antibiotic Sepsin as a year has gone past which is the recommended period.
If anybody has any questions I will be happy to answer, how ever daft you may think they are, as at the beginning of treatment everything is a mystery!
An amusing follow up to the SCT is that I have to renew all my childhood jabs owing to a new immune system, so in the last couple of months I have had the meningitus, whooping cough, flu, polio, and various others. Apart from picking up every cold going round, I have had no real side effects apart from an arm like a pincushion (nothing new there!).
Look forward to hearing from you all,
Chris and Lena x
Hi all.
Phew I'm Dex free now till my next cycle 😀 just waiting for the crash now :'-(
David – like I said in the original post those results are the norm for me and are the results I have to live with and I'm bloody well going to live with them 😉 though I must admit my neuts do make me a bit nervous.
I've been told at the day case unit if I get to cycle 25 then the Revlamid becomes free to the NHS. A goal to aim for but still not on my radar yet – I have my radar set a bit closer to home than that.
I'm glad you are getting on with plans for some holidays away I do think they give a you boost and a break from MM though they can be a bit nerve wracking at first being away from you usual medics.
Massive congratulations to you and Mo for becoming debt free 😀 what an achievement.
Eve – I'm on this regime until it stops working. Then it'll be a mad scramble to see if they can find anything else to keep the MM in check! I'm on 25mg of Rev 21days/cycle, 500mg Cyclophosphamide days 1,8 & 15 and 40mg Dex days 1-4 The only adjustment is if my neuts go down to 0.5 :-S then I stop the cyclophosphamide for a week. My beer intake goes up and down with my nausea – thanks cyclophosphamide :'-(
Vicki & Colin – I'm resigned to the fact that my PPs aren't going to dip much further I'm just happy they're stable and hopefully the drugs, sun and beer will keep them that way.
It's annoying that my back op has been delayed because it stopped us going to Belgium last weekend. No losses were occurred but still!
Tom – stable will do for me. After all you are stable too 😉 in a stable remission lol and long may you stay that way.
I try not to get p***ed off because it doesn't achieve anything and is a waste of energy BUT lol and I think Steph worries around blood test time as I do as I think the majority of us do but there's not a lot we can do about that.
Holidays, breaks and beer booked to date.
End of Sept – week in Greece. 😎
Early Oct – 3 nights in the Lakes 😉
After the Lakes off to the Nottingham beer festival 😛
And before the end of the year a weekend in Belgium to be booked no confirmed date as yet.
All the above are provisional and rely upon the skill and professionalism of my wonderful NHS medical team and the drugs they so readily supply me.
This ain't a rehearsal lets get out there and give it our best shot!
Every day is a gift
Andy & Steph xx
Hi George
Like you guys my partner Colin was fit and well right up to diagnosis, other than back pain starting about 6 weeks before a diagnosis. He was diagnosed within a month having had full skeletal survey, bone marrow biopsy, blood and 24 hour urine test! It a roller coaster alright! I don't thin now that you are on the radar George, that a few weeks will make a difference either way. They will plan and assess and then find the right treatment for you.
It is doable though, so be strong and hit this mm on the chin :-). We'd never heard of it before, now Colin has had front line treatment and a stem cell transplant!
Good luck with your treatment 🙂
Vicki and Colin x
Hey jean and frank,
Frank must have a built in sport radar….waking up for football and then rugby LOL! It's hard to see frank with the tummy troubles and not eating but it will pass. And his neutrophils are past the magic zero which Is great :-). As debs said things will speed up and frank will make a sure slow improvement. Be careful for yourself too jean, I haven't been 'right' since the sct (Colin would probably has I never have ha ha!). It's very stressful supporting the one you love through this very horrible time. But there will be bonuses when things get better.
Take care both……by the way not reading the news papers today, too depressing. The national sport of rugby for us needs to change to something like tiddlywinks…..we might stand a chance of winning then ! 🙂
Vicki and Colin x
Hi Peter
I think I know that now 😀 but you nip under radar as often as you wish 😉 but dropping by the normal way is better as its "Good To Chat"
Looked for you On Face Book, do you have a photo on profile? or is that you that just joined ??
And i will try to be good 😛
Tom Onwards and Upwards
Hi Tom
You have to remember that on our side of the hill we are very sneaky
15 stone ok , unless you are 4-6" tall !
The wine & chocs were taken several hours apart !
Going to rub grow more into beard to encourage growth
Very cold on top without much hair this weather
Outside today @ -3 c plus windchill I think spring is a long way off
Sorry I sneaked in under the radar , next time I wil ask !
Be good
Peter
Hi All
Frank feeling sick and terrible runs. Have given him tablets for cramps and sickness. Drips down. He had a power failure when doctor was talking to him 😛 . He slept for four hours and said that he has never experienced such a deep sleep. Doctor did not say anything about bloods but told him that "he was ahead of the pack" but not to get complacent as it will get worse. Thanks for all your good wishes
Best to all
Love Jean xx
Ps woke just in time for United match – think he's got built in radar? :-S
Hi Eve
I'm not off radar, I just don't come to this site very often, but I do blog fairly regularly, so if you want to know how I'm doing, you're welcome to read it: jetblackliving.wordpress.com.
And yes, you're right, after both types of SCT, you need to renew childhood vaccinations. But your haematologist and GP should advise you.
I didn't intentionally have a back to back SCT. I was in CR after the auto, but sadly it only lasted about 5 months, so I had to re-commence treatment in Feb this year, which was followed by a donor transplant, from which I am now recovering.
Thanks for your comments and good wishes.
Same to you.
Jet
Hi Jet
Nice to hear from you,must have been heavy going with back to back SCT,they do say it is the best thing to a cure.Have not heard about vaccination for shingles,but do know if you catch it early,have less side effects.
I believe you have to have all your childhood injections again with donor transplant:-S Helen got whooping cough,seems injection only last 7 years and she only had an auto.
So important to keep your immune system healthy,good luck for the future just in case you go off the radar again.Eve
Gill
My heart goes out to you. Grief is so painful. My neighbour's husband died in March this year and we both look out for each other and ask how it's going – grief and managing alone versus cancer and its treatment – fortunately we both feel able to say how it is, good days and bad days. She has experienced the same as you though, with people avoiding the subject of death and grief, I think because they can't deal, or don't want to deal with the pain they will experience when you express yours.
One friend who went off radar with me soon after I told her about my diagnosis came up to me the other day in town and apologised. She said that her partner of 25 years had left her and that she couldn't face my vulnerability on top of her own.
The other thing is that often people are scared to broach the subject, because they think it might upset you, not understanding that the upset is there whether you express it or not and not realising that you actually WANT to talk about how you feel and about Stephen. So it may be that you need to take the lead, maybe you need to express your feelings as a way to allow them to talk about it and to talk about Stephen. You may be happily surprised by the outcome.
And as everyone else has said, it will take time and crying is good. I wish you well.
Jet
Well spotted Eve, I missed it first time round but you managed to sneak your news under the radar Jo!:-0
So, spill the beans about your relapse and your new treatment if you please. I know it's not easy and as positive as I may usually be, each relapse (I've had 3 up to now) has knocked me for 6… one into the outfield, one into the stands and one right out of the ground… I couldn't find the last one and had to call for a new ball. Anyway, enough of the cricket analogies… I'm no big fan. :-/
in your own time.:-)
Much love 🙂
Dai.
