Hi Maria,
Welcome to the board, it is as supportive and friendly a place as you will ever want to find… but I'm sorry you had to find it in the first place. 😀
The beauty of this board is that there will be someone a few days or a few weeks ahead of you and there will be a line of people stretching all the way down the gamut of experiences that MM and its treatments provide. 😎
You will never have to worry about the question 'Is it only me?'… because the answer will be a resounding no! From your prognosis and frontline treatment, through preparation for a Stem Cell Transplant, Velcade, Revlimid and beyond… procedures, processes, frustrations, shared joys, fears, delights and diets… all MM life is here… with someone to answer your queries (or if they can't, pass you on to someone who can). 🙂
There is a plethora of websites and web information (and web mis-information) out there but most here will tell you that for all practical purposes and support, MUK is all you will ever need. 😀 😎 🙂
Regards
Dai.
Good luck with your fight too Scott.
I hope the Bendamustine shows good results and puts you back on your feet. I too suffered with Velcade… It made weak and groggy and exacerbated the PN I'd got from my CDT. I got into full remission with Velcade, the medics were all pleased but it relapsed within 4 weeks. That seems to have been my MO throughout my fight with MM… fine while I am on treatment but high readings as soon as I stop.:-(
How does Bendamustine work? I know about the dosage and the Cycles being heavily weighted at the front but you talk about the toxicity… if you get your levels down do you stop treatment? And what happens when your levels start to rise again… do you start treatment again.:-|
Good luck with it any way up… I hope you do get more good days than bad and that Bendamustine surprises us all by proving to be very efficacious and long lasting. 😎 🙂
Regards
Dai.
Hi Colin & Vicki ,
As Ali so rightly put it Whoop, Whoop…. and do you know what? Whizzee!
When Janet brought me home she went into mode and treated me the same as any other time that I had been 'inside'. She put me in my chair, made sure I was comfortable, then went out to get my bag and bits, switching on the kettle on her way out. 🙂
I remember looking around me… everything seemed the same but there was no feeling of institutionalisation… out lounge is a different shape but overall bigger than Room 19. The difference was the views from the window. From my hospital window I looked out over the front of the hospital… beyond the disabled car park to the lawns and paddock of what I imagine was once a cricket club. It was green, spacious and for someone stuck in a room for the best part of a month, quite lovely. 😀
The view at home was quite different. We have a pair of double, full height sliding windows in our lounge which gives access to our back (side) garden. It was early April and our garden reflected all the plants and bushes of early spring. When I had left home for hospital and my SCT the garden was almost naked… now it seemed full of the promise of life and the significance of the flowers, plants and buds was not lost on me. 😉
Then I burst into tears. Janet was on her way in with a tray of all things tea and biscuits and she quickly put down the tray to comfort me. She made all the right noises of reassurance and told me I would not be left alone unless I was either asleep or by personal request. She cooed and clucked and asked me if I was feeling overwhelmed… I said that yes, I was but that was not why I was crying… so she asked me what it was that had made me cry… I tried drying my eyes and pointed out of the window to the platforms around our bird feeders. 🙂
Mr & Mrs Robin, who had both been with us all winter, were taking turns to collect their seeds and I had not seem them for a week or so before I went in. Their presence made me cry… it really made me feel that I was home. I had a cup of tea, admired but avoided the biscuits and sat there waiting for the Antiques Road Trip to start… a programme we often enjoy together, it also works as an alarm clock reminder (we have to be home by 5.15pm for Dai's injection etc). But I felt small and lost and Janet just said 'Bed?' and I nodded and then I was home. 😎
Take it easy… but take it. 😀 😎 🙂
Dai.
Hi Andy,
I think the technical term for your news is 'bummer'. To get to a point where everything looks as is it is in place, only to be faced with a 7,000,000 to 1 chance must be devastating. Your donor (or possible donor) has 2 points that make their possible contribution invalid, or dangerous, begs the question: 'What are the qualifying criteria?'
That you can't get closer than that seems unbelievable with 7m possible donors… but who knows… the 300 or so new ones each month might throw one your way… but like you I imagine I wouldn't wait with bated breath.
What says the Prof re: future drug regimes? Is the RCD a long term possibility while you wait for a donor?
And can you remind me again why you can't have an allo?
I am disappointed for you Andy… you seem to have got so close and the RCD seems to have brought you to the right levels…
Regards 🙂
Dai.
[quote]I am in full agreement that a positive attitude & outlook is important & extremely beneficial and this is something that comes with time following a diagnosis.
However, with regard to feeling down and utterly depressed, which can be as a result of many factors for each individual, I disagree entirely that it is a matter of "choice". While it is perhaps nothing to do with "the rest of us", our support will no doubt be beneficial & appreciated by those who choose to share their experiences and I would encourage all who feel comfortable with sharing to do so.[/quote]
Hi Angie Jayne,
Clinical depression is no joke and can be overwhelming and support should be garnered wherever it is available. But the sort of depression I was/am talking about is that connected specifically to or with Multiple Myeloma.
Receiving the diagnosis of MM with its terminal prognosis can also be overwhelming and can take the person involved into a very dark place… a place where it is very easy to give in to negative thoughts and negative actions. Trying to come to terms with treatment while in this frame of mind can be devastating for the patient and extremely difficult for the carer/s.
It is my contention that that person should try to fully understand the nature of MM, the types and length of each treatment and the overall prognosis of the disease. The type of support available on this board will show time and time again, through personal endeavour and experience that a positive approach to both the disease and the forms of treatment, gives a much more positive outcome than when tackled with a negative, defeatist attitude. Remember, I am not talking about people with a history of depression or somebody who has clinical depression… I am talking about those who find out that they have a terminal disease and who allow themselves to be overwhelmed by that fact and the treatment that comes with it.
Those people have a choice. They can give in to dark thoughts and take some sort of comfort from dark places or they can learn from the experiences of those who have gone before them and take comfort from the positive approaches and outcomes that those people offer as a way forward with MM.
You give 5 examples of places to go to share their experiences of depression, anxiety and fear… and I have no doubt they offer good advice… but it is my contention that visiting such sites can confirm anxieties, fears and forms of depression that may not yet truly exist.
I woud encourage anyone who visits or joins this site to take a good look around… not only at this board but at the whole site in general. The people who frequent this board have all been there… received the requisite support and experiences, make friends and use all of this to move on with a far more positive approach and outlook than when they first came on board. sometimes is is just too easy to give in to dark feelings and say 'Help me because I can't help myself'. I believe that we help people help themselves… through a positive outlook in a supportive environment and as often as not that is all they need.
Of course, if true depression sets it that is an entirely different matter.:-|
Regards
Dai.
Hi David,
It sounds like you are having the greatest of times… well deserved after the ups and downs of this year… and I am so very glad that these great times are being shared with your family. 😀 🙂
The photo is a wonderful example of camaraderie… joy, togetherness and intimacy… perfect. 😎
Enjoy the rest of your stay and the Ten Pin Bowling extravaganza on december 1st (my son Ross's Birthday).
Regards and wishing you soft bites for the next week or so. 😉
Dai.
PS. Champagne & Guinness = Black Velvet.
Hi Tina,
Perhaps it's not quite rooftops time but you can shout from an upstairs window… Unless you live in a bungalow of course.:-D
You will get better much more quickly now you are getting an appetite.8-)
Dai.
Hi Andy,
I was given potassium drink tablets and they made me nauseous… and very little makes me nauseous… so they switched to ordinary tablets… and while vile at least I kept them down. Luckily my levels were back up to normal in five days.
I agree with the banana substitute… We have one with our breakfast and one for eleven sets… and my levels have remained up and fine.
Great bloods results… I believe you have finally cracked it… Here we go, here we go, here we go!
Dai.
Hi Tina,
I have heard of the Picc Line before… I looked it up and it really does seem a simple yet effective long term procedure, especially for those who have the devil of a job giving blood or finding a place for Cannula's.:-(
But when I asked at our excellent Day-Case Unit I was told 'We don't do them here'. When I asked why I was told 'There's been no call'.:-0
Now that I am having semi-regular blood transfusions I might ask, or rather request, for one to be fitted again.8-)
Dai.
HI Kez,
I am addressing this to you but it is a general statement meant for all those in a similar position to you8-)
[i][b]It is entirely your choice to feel down and utterly depressed and to seek out a dark place for your expression of those feelings… your choice entirely and nothing to do with the rest of [/i]us.[/b]
But remember this. [b]It is a choice.[/b]
You can also choose to try and remain positive. You can look at your MM as a long term condition (it is yours as a condition whatever you choose). You have to decide what is your best chance os survival… how long you last and how long you can stretch out your treatments and your response to those treatments. 😉
What will give you your best chance of long term survival and response to treatments… a dark place or a positive momentum? :-/
I have been on this board for 3.5 years and from my experience, those with a positive attitude… those who refuse to let negative feelings and general negativity from family and friends (although they may feel they are being positive my telling you what a brave soldier you are fighting against a terminal illness). 😛
Of course it is is quite normal to feel down, angry and unfairly selected to be diagnosed with such a rare and terminal disease… you would not be human if you did not feel this way… but once on the treatment it is vital to get onside and fight against MM with a positive thrust. Turn your anger against the disease… refuse to let it beat you into submission by following the treatment, accepting what is making you feel so grotty is making you better… and as for the unfairness… yes, it is unfair and so random… but that is now your lot so you might as well turn your energy to the fight against MM (mental energy… the physical will be needed in fighting the disease and supporting the treatment). 🙂
You will finish your CDT, prepare for your SCT, get your remission (hopefully 3 years or more) on relapse you will more than likely follow a course of Velcade in preparation for your 2nd SCT, (never as long as your first but could still generate 2 to 3 years) on relapse you will most likely follow a course of Revlimid combined with one of the newly licensed drugs from America… which are showing great signs of extending the life of Revlimid (median now 30 months) by 100% – and the beauty of it all is that there are new drugs being developed in the states which might make a mockery of what I have stated above, with new regimes that could take you into the 10 year survival with relative ease. 😎
At the moment MM is classified as terminal… but the Americans are already preparing for MM to be re-classified as chronic (needing a general median of 10 years survival… and they are being very bullish that that state of affairs will come sooner rather than later… so you are in a good place for taking those opportunities… I truly wish I was starting my MM journey now, rather than 4 years ago.:-(
Look at the long term… and decide which state of mind, which state of life will suit you best… negativity or positivity.:-)
It is your choice. 😎
Regards.
Dai.
Wishing you the very best of luck with the Bendamustine Keith. 🙂
I shall be keeping a close eye on events and all of your reports. I hope that you settle into a good relationship with the drug and that your levels come down as your neuters go up.8-)
You deserve a time of respite and some kind of normality and the is no reason to think that Bendamustine will not give you that… the reports from America seem to support a good response from people in our position. 😀
All the very best. 🙂
Dai.
Hi Tina,
Yes, it can take a few months… even 6 months or more to get to that point where you feel almost normal. But that doesn't mean that you will feel as you do now for all that time. Your getting better will be a slow but steady event. I imagine that you will feel weak and easily tired by taking on certain ventures (like going out shopping for the first time) but feeling weak and easily tired does not equate in anyway whatsoever with feeling ill. 😎
Your feeling ill is an after effect of your SCT and will soon pass. You will grow stronger day by day, week by week and although you will hardly notice the difference it will occur and you will soon notice the difference between now and then.:-)
You have only been home three weeks… give it another three weeks and you will feel different again… I would not be surprised for you to feel substantially better re: feeling ill, although you will still feel weak… especially if you over-do things.:-|
Take your time, take it it easy, don't push yourself and let your body dictate what you do and how you do it.8-)
You are in this for the long haul… hopefully with a SCT remission that lasts years and years… don't give up on it after only three weeks… you have, if not all the time in the world, time enough and plenty for those things that are important to you. 😀
Much love and best regards 🙂
Dai.
Thank you Tina,
I believe that I will have the same attitude as Patrick when it comes to letting go… even as I slip away I am sure I will wake again and drag it out. I am a bit of an existentialist… 'I think therefore I am'… while I can think and speak and make sense I believe that I can carry on.:-D
I remember my father, dying of lung cancer… my youngest brother (but much bigger and stronger than I) used to carry him like a small child from the lounge to the bedroom… and my father saying 'this is stupid'… because his mind was sharp and lucid and while he was lying quiet in the chair or bed he could convince himself that he was about 80% normal… until he tried anything physical and needed his oxygen. He was like that until the night before he died… frustrated that his body could not match his mind. 🙁
Yes,there is hope in the shape of the new novel agents coming from the USA… and all those coming behind can take great hope for longer remissions or extensions of treatments… those like scott, Keith and myself just have to try and hang on for the time it takes to get the first one, Kyprolis (trialled as Carfilzomib… now licensed in the USA) on board in Europe (Spring, early Summer next year).8-)
As usual it will be in the hands of the funding body NICE to make it available to those in need. I just missed the trial by a matter of days in March…when I fulfilled all the criteria except for Myeloma in my urine, which showed a week later… 3 days after they closed the trial acceptance… but my consultant was very bullish about the drug, believing it the perfect companion to Rev & Dex… having the properties to knock the MM right back and allowing the Revlimid its full power… with the distinct possibility of extending the treatment's life by a good couple of years.:-|
Let's hope and wait and see.
In the meantime I will be hanging on grimly… but with a smile on my face.:-)
Much love
Dai.
Hi Tina,
If I recall correctly Patrick had nearly a year on Bendamustin, is that right? 😐
I assume that his Nuetrofils never really came up that much during his Bendamustine treatment and he finally succumbed to infection due to being Neutrophenic and therefore unable to fight for himself and relied totally on the antibiotics.:-|
As you said, it is a pity that he didn't recover enough to make it to the Pomalidomide… perhaps Keith and I will be more fortunate… and there are several new treatments either already developed and licensed in America, just waiting to be licensed in Europe that might be suitable.:-D
Hope is the key… it keeps me going for sure.8-)
Much love 🙂
Dai.
Hi Vicky & Colin,
I think it might be a case of the medics being a little too generous with the GCSF. They wanted to get his bloods flowing and his platelets growing, so GCSF was thought the best way. 😎
Now it seems that all is well with Colin's bloods but the after effects of the injections are hanging on… and you all have to wait for the GCSF to work its way out of Colin's system. That shouldn't take long now that the bloods are flowing and growing… except for the pain that is… but as I said, that could be simply a case of overdose… but for the medics, I imagine they wanted to be safe rather than sorry… and they more than likely want his bed… if that is the case then they got that one wrong.:-D
Home very soon I imagine… and then he can walk, doze, sleep, watch TV, read etc., to his heart's content… just remember David's and my advice… a moratorium on visitor's and a healthy diet… just for the first few weeks… perhaps until his first full bloods test, which will tell you where he is regarding:
1. Neutrophils
2. Platelets
3 HGB
If those three look healthy enough, with the right amount of growth, then perhaps you can both start to relax a little… for the next 6 months or so.8-) 🙂
Watch him like a hawk when he starts suggesting adventures… he will feel ready but as sure as eggs is eggs he will suffer for it. His bloods might be Okay, he might be mentally up for it… but his whole system has had a kickstart after being completely shut down… and his body will be weakened from such a long time doing nothing.:-P
My best wishes for a speedy recovery and my very best regards to you both.:-)
Dai.
