Thank you all for your messages of support, truly appreciated. 🙂
I had a call this morning from one of my lead nurses to says that a refferal has been made to our local District Nurse team to make regular calls to check on my 'Pressure Ulcers' (new posh name for bed sores) so that will be one less chore for Janet. The nurse will measure, clean and dress the ulcers and keep records. 😀
We haven't had any contact with our local team for over three years but they were very good to have on side. When I was in hospital last week I was given an air mattress which was excellent and I was told that there could be one made available for my home bed (made available by the District Nurse team… so hopefully)!8-)
I started my 40mg of Dex on Tuesday morning and I had my last heavy sweat early this morning, making a total of 18 change of tops in 48 hours… each one looking as if I had just pulled it out of the washing machine. My current top has been on (and still dry) since 11am, so there is my measure… I hope it improves as the weeks progress. 😉
The [b]Imnovid[/b] (Pomalidomide over here) seems to be quietly doing its job… hopefully having a go at the secondary tumour on my sternum. Velcade got rid of it first time round (Summer 2011) so I am hoping that Imnovid will do the same before getting stuck in to the KLC's. 😎
Life is interesting isn't it. 🙂
Dai.
Hi Andy,
Your travels are varied, I'll give you that… but you always seem to return to the Lakes (We love them too). I have done my share of travelling and most of them have been fairly relaxing but it only takes a few days in the Lakes for us to feel relaxed and recharged. Do you move around or is their one special place?
I'm glad to see that the operation seems to have been successful and well worth the accompanying aches and pains of recovery. As for Cycle 21… embrace it… and 22, 23, 24 etcetera, etcetera. As long as the treatment continues to hold your PPs at 25 (and hopefully get them down to plateau level) then all well and good.8-)
I appreciate how frustrated you and Steph must feel… how tantalising the nearness to a level that would allow progression to a SCT… but for now you are keeping this bloody awful disease at bay and that is the basic gift of each and every day.:-)
Whatever it takes Andy, whatever it takes.8-)
Dai.
Thank you one and all,
I went into West Bridgford yesterday lunch time for an eye test and I felt quite good. After several days of fighting rising temperatures my temperature stayed quite stable… until 10pm last night when it started to drop and then I had to fight it from dropping too far… 36.5 for quite a while and 36,7 as the average. I finally dropped off at 6.30a.m. waking again6 at 9p.m. for meds and breakfast. I finally managed to get to 36.2 at 11a.m. and dozed for a couple of hours… if its not one thing its another. I realise that there must underlying causes for these swings and I have come to the conclusion that there maybe more than one at work.;-)
I have been carrying this upper respiratory tract cold for a week… I believe it is easing off and I do not believe that it has dropped into my chest… but I know that it is hard to be certain.:-/
My high sugar levels should be checked on a daily basis but I have not heard from my GP, who was taking it in hand for over a week now… time to chase him up because while I am taking tablet form medication I have no idea of my sugar levels whatsoever.:-(
I am still waiting to start my Pomalyst and in the meantime I am on Dex for 4 days per week, Tuesday to Friday inclusive. I have never taken Dex as a solo drug before but I will be building up my tolerance because it will be the companion to Pomalyst throughout its course.:-)
The temperature rise could easily be the sharp rise in my sugar levels:
The cold I believe to be the luck of the draw:
The solo Dexamethasone could be the underlying cause of the temperature drop::-)
Pure conjecture I know but I would not be surprised if I was right. I just wish that my GP would get his act together… he is usually right on the ball, so I am finding it hard to accept his lagging behind when I obviously need some urgent help.:-P
Appointment at the end of surgery tomorrow I think.8-)
Dai.
Curcumin as a supplementary medication for MM has been around for quite few years to my knowledge. When I asked my consultant about it about 3 years ago she rolled her eyes and in essence said 'Please don't start down that road. I am sure that there are plenty of good supplements out there that might do you the power of good but we don't know what effect they may have on our mainstream treatments. We have found problems with Vitamin K and some citrus fruits but there is not the time or the expertise to test them all. My advice is to wait for remission periods and try them then.' 😛
Remission periods? What are they when they are at home ????? 😀 🙁 🙂
We need a few remission bods to try a few supplements and see if they feel any benefits. Orderly queue please. 😎
Dai.
Excellent news… 😎
Congratulations to the both of you and long may it last. Don't do anything daft by way of celebration though. Keep taking small steps so you know you can walk safely before you start to run.:-D
Well done stem cells you have done your job… now let Geoff & Jacquie do theirs and keep you fine tuned and running in for a long, long time. 🙂 😎 🙂
Dai.
Hi Trish,
Was this Velcade treatment supposed to be a pre-cursor for a SCT? If not was it supposed to be a stand-alone treatment where Peter could grab a period of remission to, as you put it;
[quote]recoup his energy and a sense of normality again[/quote]
Velcade is not known for its bounty of giving a long remission… 6 months to 1 year is the norm from what I have seen on here over the past 4 years or so. Why is your consultant being so 'noncommittal'? Has he mentioned the next step at any time during the past 8 Cycles? Perhaps you need to press a few buttons on October the 9th… something has got to give in terms of short/long term plans.:-)
I wish you and Peter all the best in whatever comes next… I imagine it will be Revlimid if SCT's are not in the picture.8-)
Regards
Dai.
Hi Jewels,
Eve is right, like Slim and your Mum I too have beer right there only to be pulled back by the medics. Don't give up just yet. My eldest daughter Becky pulled her wedding forward by a year to make sure I could attend her wedding last October (22nd) and I made it and a wonderful occasion it was too. Almost a year on and I am still here, still fighting and still a little ahead of the game.:-D
The most important thing, once you get your Mum home, is to make sure she drinks a lot… 3 litres a day all told through water (with squashes etc), tea, coffee, milk etcetera… keeping her hydrated and her staying hydrated is the family's biggest task for your Mum… the more she drinks the better she will look and feel.8-)
I wish you and your Mum all the best.:-)
Dai.
Hi Scott,
Welcome to the forum, I truly wish you were not here… but you are so we had best make the most of it.:-)
Before you know it you will be welcoming other new MM'rs, offering advice and relaying your experiences of all things medical & domestic connected to this bloody awful disease.:-( But you will generally find more smiles than grimaces on here. 😀
You have contracted MM at an exciting time in terms of treatment development and understanding of how the disease works… at the present MM is categorised as a terminal disease… to be categorised as a chronic disease you have to have more patients reaching their 10 year survival rate than not… and we are getting very close to that mark (especially in the USA, the leading light in developments, pharmaceuticals and treatment programmes – we are generally 1 year to 18 months behind.8-) 😛 😎
Good luck with the CDT… let's hope it gets you primed for your Stem Cell Transplant (SCT) and then a long remission. Keep things in perspective, set your goals and get your mantra… there are a few of us who hold fast to our mantras and spread them around a bit.:-)
David (Perkymite) [b]'Vasbyte'[/b] (South African, meaning [b]'Bite Hard!'[/b]
Tom [b]'Upwards & Onwards' [/b](and our resident voice of good cheer and Vodka).
And me, Dai [b]'Whatever It Takes'.[/b]
Use any or all of them (I do) or find something that suits you down to the ground.8-)
Welcome… and remember to ask anything you want… embarrassment is null and void around here.;-)
Dai.
Hi Jan,
My Grandmother was also a Romany gypsy… her parents found their way to England after a 5 year trip starting in Romany and travelling through quite a few Eastern European countries before sailing from Northern Spain to England. They ended up in a permanent gypsy camp in Central London… near to Latimer/Ladbroke Grove… it is still there. My Great Grandparents took on the name of the camp leader… so Bucklands they became.:-)
I have an interesting anaemia that is common amongst Eastern European Romanies… it is similar to Sickle Cell but can be treated quite simply by Vitamin B6 (Pyridoxine). My consultant tells me that my MM is totally coincidental to my anaemia.;-)
You might want to trace the address of the camp… they did have a couple of researchers who have produced a few good books and research papers. Your relative may well be recorded in their work. One of the researchers came to live in Fishguard for a few years in the mid-90's and I borrowed a couple of her books… Tracey Morris? or something similar springs to mind.:-)
It might be worth a look.8-)
Regards
Dai.
Hi Eva,
I hope you find enough relief to ensure your 'delay' but it is a fine lined call to make. Your having to balance the poor quality of life under the standard treatments against the process of a 2nd SCT… for me I would choose the 2nd SCT and hope and trust in getting a good remission, accompanied by a decent quality of life. 🙂
The good thing is what follows… the time taken to follow through the processes and procedures of the transplant, the recovery and the time to the relapse. Looking down the road we can see a promising array of newly licensed treatments (Pomalyst – Kyprolis etc.) which will most likely be part of the standard treatments by the time you are ready for them… this and the emphasis that the research medics are giving to understanding and employing in the make up of how MM builds up resistance to treatments makes for an interesting and exciting time in the fight against the disease.8-)
I wish you well… in every definition of that small word.;-)
I will second Eve's best wishes with the Revlimid David… I have unfinished business with that particular drug because I am still convinced that my contracting C: Diff and its effect of not allowing the Revlimid to absorb properly meant an untimely move onto Bendamustine… so I am holding out for another go… depending on whether I get my Pomalyst trial later this year … or even when the Pomalyst has done what it can.8-)
I can understand why you came off Velcade but by the sounds of it my PN is further down the road than yours… the difference is, what do you do when your options are limited to the enth degree… my PN observations sheets are almost totally fourth column responses… but we know we will carry on at the maximum dose regardless of any and all observations… its a simple matter of life or the other option… so we carry on regardless.:-D
Best of health to all.:-)
Dai.
Hi Eve,
Yes, it looks as if the trial will be based on Pomalyst, TM (Pomalidomide as was) but we have no dates as yet.;-)
I reverted to twice weekly last Thursday and it was not pleasant… I spent the whole week-end feeling really grotty, which was was not helped by my missing a complete pot of meds on Friday morning… giving me flu symptoms, an upset tummy, running tap diarrhoea and a spaced out mien for 12 hours or so. This is the 5th/6th time I have done this in the past 4/5 years and it is most unpleasant. Janet brought me B in B because she was off to her hairdresser's early and although she had handed me my meds bucket, I had put it back on the dresser when I went to the toilet. A silly mistake of memory and routine and I paid for it. My next meds were due at 8pm but they take a good 4 hours or so to start their time release into my system… ho hum.:-)
I hoped Sat/Sun would find improvement but very little all told and I felt absolutely bushed this a,m, when I went in for Inf:3 of 4 of Cycle 5. In bed now and totally whacked… last Inf: of Cycle 5 on Thursday and then 10 days recovery… hopefully I'll get some relief in there and adjustment in the next/last 3 Cycles of the treatment… with some good bloods results amongst them. 😎
I know that the once weekly infusions didn't hold the FLC's down but I sure felt good.:-D
'Whatever It Takes', Onwards & Upwards, Vasbyte.8-)
Dai.
Thanks to all for your encouragement and support. 🙂
My lead nurse confirmed today that my consultant was attending a trials preview for Pomalyst in the next few weeks with the possibility (strong but still a possibility) that a trial of sorts might be beginning before the end of the year. So I need my Velcade to either plateau, or better still reduce, my Free Light Chains before the trial is set up. 😎
The change back to twice weekly infusions from once weekly was confirmed by my 2nd infusion today… any side-effects etc., will be noted but whatever, however, I will put up with anything as long as my FLC's are brought under control. 😐
Good news for Velcade users. My hospital are now having the Velcade made up with a refrigerated life-span of 7 days… allowing 2 batches to be made up at a time and kept in the Day-Case Unit. This means no further waiting for the juice to come down from the pharmacy. Hopefully coming to a Day-Case Unit near you soon. 😎 😀
Dai.
Hi Vanessa,
You really don't need this on top of all the stress and worry of Stewarts MM… but it is happening and you do have to face it.
[quote]1. We have no life insurance or critical illness cover, nor mortgage protection, just income protection. We will be unable to make repayments soon
2. We have a baby, I will return to work full time, this still leaves a short fall …I am on meagre salary.
3. We will have to sell , negative equity leaving us with hefty debt…how we pay this is beyond me.[/quote]
1. Make a claim for housing benefit from your local council's Housing Department. They will be able to make the interest payments to your mortgage company and perhaps even the mortgage payment itself. As for the rest of this first point follow dickb's excellent advice.
2. If you are truly on a meagre salary you could consider leaving work and becoming Stewart's Full Time Carer… I am not sure how much that is per week but as far as I know it is tax free and as an employment status it will help with other benefits. Stewart will be able to claim 'Disability Living Allowance', most likely at full level which means his allowance is not subject to any other income or earnings from self-employment etc. but he may be better off claiming 'Job Seeker's Benefit.
3. Not necessarily, as shown in answer No. 1.
It also means that he will qualify for full Motability Allowance… which means a new car (look up the Motability Scheme) at no cost, renewed every 3 years. All you have to provide is petrol/diesel… everything else, including breakdown cover, servicing and insurance etc., is covered.
Between your 'Carer's Allowance', Stewart's 'DLA', including the 'Motability Allowance' and Benefits (Housing and Job Seekers) you may well be able to exist at a reasonable level of income while sharing a full-time life together.
Your local Citizen's Advice Bureau will be able to help… plus they can check on Stewart's Employers to make sure that they are laying off staff due to 'Economic Downturn' and not just using it as an excuse to get rid of Stewart due to his illness. As you suggested, the firm could lay Stewart off due to long term illness which will make it easier for Stewart to make his claim for unemployment (backed up with a letter from your GP and your Consultant). Remembering that redundancy means the job is being made redundant NOT the person… so if someone else takes on Stewart's job the firm will be acting illegally.
Look up 'MacMillan Nurses' and contact them… they have a team that deals with all these issues and they will be able to help you on all the items above and more… including a small, one-off payment (£300/400) to get you started).
All the very best and keep in touch.:-)
Dai.
Hi David,
I hope that this has not been your last trip abroad… there is always Wales and Scotland.) 😎
I can recommend both the Pembrokeshire coast, north (Welsh to bits and the south 'Little England beyond Wales') and the Gower Coast, compressed into one small area of outstanding beauty. And yes, I can vouch for your travels since you joined the forum (a short time after me if I recall correctly)… I especial enjoyed your report on your 'Saints and Stones?' tour.:-)
I hope to be around for a good while yet (but you never know)… and I hope you are sell around to see me off. 😎
Regards and best wishes… 😉
Dai.
Well I for one will be following:
[quote][b] 'Gill's Big French Adventure'[/b][/quote]
I realise that this journey is a [b]'Big Thing'[/b] for you… especially given the anniversary and all the other connections and connotations. At least you have already broken your duck by visiting the house and village with your friend.
Even if you had a dozen family members and friends lined up and willing to accompany you I am glad you are making this particular trip on your own. I imagine you will have some ghosts that you want to stir into life… and others that you will want to lay to rest… well good luck to you and if there are moments of doubt and others of 'scardey cat' significance… then send out a thought and imagine all those thoughts returned with all the loving support that we can muster. You may be on your own… but there is no need to be lonely… and you will always have Stephen… not behind you but beside you… laughing, encouraging and most of all, just being.
The very best of good fortune in your 'Big Adventure' Gill. Please keep in touch and tell us your stories as or if you can.
Dai.
