This topic contains 51 replies, has 17 voices, and was last updated by 
DaiCro 12 years ago.
PAD is velcade + doxorubicin + dexamethasone. Its part of a trial looking at whether they can delay SCT – I don't know yet what my results will be.
Yes, I too have had endless scans – the most pressing issue for me (apart from treatment to get the numbers down) is that I fractured several vertebrae. I hope they're going to be able to fix them up a bit, in time.
My brain is mush too sometimes – and I've just spent most of this week in bed feeling crap (and missing my lectures). It's a long journey. All we can do is keep walking in the right direction.
Good luck.
Hi Karen
Sorry to hear you are a bit down 🙁 and am sure it will get better as time nips along I have neen in your position and after a few years and many a black day I am now "Spot On" stick with it Girl its going to be worth it 😎
I dont have your request on Face Book ? you will know its me my photo is of me in red dickie bow 😎 one of me posh time lol, cant look for you as i dont have a last name or photo to compare with .
Stay strong and hope its not long before we can just chat on F/B
Love Tom "Onwards and upwards" xxx
Hi Kes,
I wanted to welcome you to the 'Club', as a fairly new member since last November myself and a similar age to you.
I am really pleased that you have found the site as it the best way of finding out what is happening to you from people going through exactly the same thing. The hospitals are limited in the general help they give, and from the sound of what you have said they have given you the treatments without much overall guidance, much like I found.
My wife has been much more active in digging out information, and finding this site, much more than me (typical head in the sand bloke), and it sounds as if you would be much less isolated if your husband is more aware of what you are going through, maybe you could both go to the GP or the hospital (sorry if I am wrong on that one).
Your symptoms are much like mine, painful ribs, back, shoulders, which got cripplingly bad a couple of months after I was diagnosed.
I had 8 cycles of the same drugs as you, with a bit less Thalidomide, but once I was mobile again I carried on working and socialising. You will find that once you have finished the cycles you will feel 100% better! The worst thing I found was the constipation and loss of appetite.
The story of my recent SCT is under the heading 'Treatment'.
I have tried to carry on with normal life as much as possible, and fit the hospital stuff around my life, and not the other way round, if that makes sense!
I was pretty emotional at first, as it is a mortally serious business, and difficult to come to terms with, but although at first I thought 'whats the point of working', in fact you can cut down work to a sensible level and gain a lot from the genuine kindness that people constantly surprise me with. It is tough on my kids too, and takes a while to adjust, but I am determined to see my daughter down the aisle, and collect the bloody state pension I have paid into for so long!
I see that a lot of the 'regular contributors' have posted replies to you, they are all brave and fantastic people to have on your side, and you can ask all those things that may confuse you.
Sorry if my brief note has turned into a tome, but I wish you every success with your treatment,
Keep smiling!
Chris (and Lena)
Hi Karen
A belated welcome to the forum I hope you find it a help. Sorry you've had to join us but truth be told none of us would choose to be here. I'm 54 diagnosed a year gone October after 18 months of back pain!!
Unfortunately for me I'm proving rather difficult to treat (a rare case) and have had lots of different treatments with little or no effect. I'm now on cyclophosphamide/Revlamid and DEX which is at the back end of the recognised treatments.
I'm being lined up for a Allo sct in the new year for which they have found a donor who is a good match though is in the USA! I find out more how this is coming along on Monday.
Sorry to ramble on so much and especially since my journey to date hasn't been a successful one but I'm ok at the moment I'm feeling ok and I still have options. I hope your journey isn't as difficult as mine and is more like "onwards and upwards" Toms. We're all different our treatments are all different our journeys are all different. But one thing stays the same is the fantastic support given on this forum.
So once again welcome Karen good luck and best wishes.
Andy xx
Ps. I'm on Facebook too and I'm also on one of my steroid nights 😉
Hi Karen
Another newcomer here, I am 56 & having had symptoms for the last couple of years, I too was eventually diagnosed in August & my initial treatment is also under the CDT arm of the Myeloma Xl trial.
LgG Lamba MM was confirmed when various tests revealed anemia, renal failure, bone lesions to upper legs, hips, ribs (1 fractured) & skull, with bone marrow at 60% & M-protein (Paraprotein) 43%.
My treatment was discontinued for the last 2 weeks of October while I was in hospital with pneumonia, so I am a cycle behind you & due to start round 5 in the morning.
Apart from providing relief of pain in my ribs, I have not tollerated the dexamethasone very well at all, it caused fluid retention throughout my body, which in addition to other problems not only contributed to DVT & a PE, but also affected my mental & emotional wellbeing considerably, so I can fully relate to the dark moods and depression that you are experiencing and especially so during the days off dex. I too have noticed a deterioration in my eyesight, perhaps due to MM being constantly on my mind resulting in a lot of online reading.
Since having pneumonia the dex & thalidomide dosages were decreased by 50% & I found the side effects were less severe during the last cycle. Dex has been reduced further for cycle 5, so despite having another chest infection requiring more anti biotics at the moment, I look forward to (hope for) an easier time with less tremors, shortness of breath, mushy brain & wobblys (all as you have mentioned) from here on.
I was expecting the halting of ttreatment while hospitalised & the recent dose reductions to affect M-protein levels, but so far the results continue to show promise: Cycle 1-38%, Cycle 2-29%, Cycle 3-16% & after 2 weeks off with just one week into Cycle 4-11%.
My consultant at Derby Royal is hoping that we shall see 4% in the near future (fingers crossed) & then all being well I too shall have the potential for a SCT at Nottingham City Hospital. The shared experiences & good reports from others about the facilies & level of care there are reassuring & much appreciated 🙂
Hope all continues to go well with your treatment & the MRI Karen, do keep in touch.
Very best wishes
Ange
Hi Chris
Thanks for the warm welcome
Please don't apologise or any guidance you want to share it is greatly appreciated
You are correct in saying that unless I ask questions the medical staff don't seem to tell me much , I do ask my regular numbers .. Haemoglobin , GFR, Light Chains & neutrophils & compare them every 3 weeks . Saying that the staff are lovely especially the specialist nurse (Tracey)
I also suffer with constipation & have to drink the horrid Laxido (yuk) . Also I think my loss of appetite is brought on by my worrying it feels like I have a lump stuck in my throat !!! ……
My prob at the the mo is the bloomin shakes & tremors its a nightmare trying to use a pen is almost impossible !! My whole body shakes , not many people appear to have commented on this subject .. Also my eyesight is more rubbish than normal .
My next clinic appointment is this Monday 26th so we will will see if things are going the correct way .
You had a 8 cycles ?? Was there a specific reason for this ?? I am being told 6 ??
Thanks for your reply
Regards
Karen
Hi Liz
Thanks for the welcome & the positive info on Nottingham hospital ..
Sorry to hear your husband has had a relapse & hoping this other treatment kicks in !! . A lady I met in hospital also diagnosed 1day after me is on Revlimid . She doesn't appear to have had any side affects , not like the CTD I'm on . It's quite strange really as she only lives 8 miles away we speak regular by text & FB we also have joined a support group , she is my rock & become a great friend .. Just wish it was under different circumstances ..
Regards
Karen
Hi Andy
Thanks for the warm welcome
Sorry to hear that you are not able to get along with the so called " normal" treatment & I really hope this match works out for you xx
The support on the site is excellent knowing people are reading & following our stories also vice versa ..
Good luck for Monday
Regards
Karen
Hi Ange
Thanks for the warm welcome
You sound like you've had a time of it !! , my side effects weren't too bad apart from the days off the Dexi's but this last cycle have been a nightmare . Shakes are horrid & the Wobblies it's like I've had one drink too many , I don't like climbing or coming down the stairs as I feel unsafe .
I began treatment on 2 Thalidomide but then the consultant decided to up it to 3 ?? It's since then that the side effects appear to have taken hold !!!
I'm a little bamboozled by the M protein level numbers ?? This is something that's never come up in conversation with any off the medical team ??
When I'm on Dexi's I tend to keep my feet up a lot they have swollen but not a huge amount which is good
Once again thank you for welcoming me & good luck with everything
Regards
Karen
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.
Hi Karen
Thalidomide (as with dex withdrawel) can cause tremors & as your dose has been increased (normal procedure under the CDT arm of the Xl trial), I suspect it could be the culprit, or at least a contributor & I would definitely mention this to your consultant, who may then decide to revert your dose back to 2 capsules.
Bamboozled, thats a new one on me 🙂 Myeloma cells produce and release monoclonal proteins into the blood & urine. Monoclonal proteins are referred to as either, M-protein, Para protein or M spike. When the level of monoclonal proteins decrease, it is a good indicator that treatment is effective by inactivation, or destruction of the myeloma cells.
Looks like we are in for some bad weather, but hope you have a good weekend.
Ange
Hi Karen,
Welcome to the forum. Everyone here is very helpful and provide a lot of support. My husband Phil was diagnosed in May with MM and he has completed his initial treatment (he is also on the PADIMAC trial that Alex is doing) and will be going in for his SCT on December 17th. Myeloma is very confusing as there are so many different types of treatment and everyone has a very different journey. PP (paraprotein) is one type of Myeloma but from what you have said in an earlier post you have Light Chain Myeloma. This means they will not be measuring your PP levels, your Myeloma is measured using the light chains. Phil has the paraprotein Myeloma as do many people on this forum but I do know Alex has light chain Myeloma. I hope this helps with your confusion, it is all so much to take in and this is made harder when you are suffering from the side effects you have mentioned. Phil and I write down all the side effects and pain he has so when we go to the clinic or the hospital we can remember all of them to tell the nurses and doctors so the medication can be adjusted if needed or something new prescribed. A lot of the medicine Phil had to take was to stop or minimise side effects from the other medication so be sure to tell the doctors about all of your symptoms as there may be a way to change or add medication to help.
I hope this helps, I have found the nurses on the Myeloma Infoline very helpful when I have been confused by things, it is a steep learning curve but they have always been able to answer my questions.
Megan
Hi again Ange
Thanks for the info , you appear very informative on mm especially since like me you were only diagnosed in August like myself You must do a lot of research ??? & ask lots of questions ..
I'm at the hospital clinic on Monday for bloods etc & to see how things are going .. Fingers crossed all in the right direction xx
Yes the weather is very foggy here in Lincolnshire & the car iced over …………
Hope your weekend is good
Regards
Karen
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.
http://www.allaboutdepression.com/cau_02.html
http://www.mayoclinic.com/health/pain-and-depression/AN01449
Hi Karen
I finished my sixth cycle of CDT on 7 th Nov
I had been on 4 thalidomide / day & 20 x 2 mg/day steroids on the dex days
After little more than two weeks my eyesight is pretty much back to normal ,shakes & unsteadyness gone , brain has come back,wife disagrees on that point ! Feet still a bit itchy , all in all ,considering all the poison taken , iam happy with progress so far
SCT first stage has started with all the tests on body components, back in Christie on Mon to get the poison to urge all those cells to rush from the bone marrow to veins ,the harvest starts following Mon, I need to find 4 mill of the little devils ,not sure who counts them ,enough for two SCT's
I agree with all Dai says I his on the button post 23 rd Nov, very well said !
All the best
Peter
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