Hi Jo,
I am so sorry that your CDT remission has come to an end… but 2 years 8 months for a frontline treatment remission is wonderful and it shows what can be achieved. It is well documented here that I wish I had stuck to my guns in wanting to see how long I lasted on my CDT remission instead of diving into the SCT route… mainly because I was 5 months into my remission and feeling extremely well with no signs of weakening or relapse. But that's my story and this is yours.
What it does show is that you respond well to treatment… extremely well and I hope that the next treatment brings similar results. Velcade once an week and Dexamethasone twice a week seems to be a fairly light treatment – is this due to your kidneys? It looks slightly like a maintenance treatment to me but either way I hope it works, knocks your pp's back, halts the kappa light chain build up and allows you as much normalcy as possible with little side effects. I was on a pretty strong dose of Velcade for my first 3 cycles and suffered for it but as they reduced it the side-effects improved drastically.
As you know I am a great believer in lower doses over a longer period… American studies have proved to them that this is the way forward and your CDT longevity has shown just what this approach can do.
The Devil is back but I believe that you have Angels on your shoulders Jo and I believe that your propensity for responding to treatment plus your Angel promoted positivity and cheerfulness will stand you in good stead over the coming months.
Heres to your next bout of remission… be it straight remission or maintenance led remission… either way I hope and pray it works and works well.
Much love
Dai.
Hi Sarah,
Its heartwarming to hear that Henry seems to be responding well to his CDT treatment… it worked well for me (also Kappa Light Chain – 'Bence Jones' Myeloma).
I also had a couple of lesions on my head but CDT saw them off, leaving two small craters that my wife Janet takes pleasure in poking (so do I… like the equivalent of twisting kiss curls). 😀
Apply for your Blue Badge, it is extremely handy. I can walk unaided but tire easily (well, stiffen up would be more accurate… a result of a nuked vertebrae and bone damage)… and I also have Peripheral Neuropathy which is a literal pain in the foot (feet)… and on bad days I am extremely grateful to close proximity parking.
Don't be embarrassed, take every benefit going… like us, I am sure that you and Henry have paid your dues. If you are not sure of your entitlements phone MacMillan's… they are extremely helpful in such matters.
All the very best, stay positive.
Dai.
Hi Bridget,
I am glad that you are settled on a treatment and I do hope that the side-effects diminish as you get into the flow.
Good luck with the injections, remember to swap sides… mine seem to be a semi-permanent feature and I found I was developing small lumps, so I am more careful how I 'map' my injections. I swap sides, starting as wide out as possible and working my way to the middle before repeating the process. 🙂
Take care, watch your neutrophils and don't hesitate to call in if you pick up an infection. Let's get the Bendamustine show on the road and keep it going for yonks*.
Much love,
Dai.
*Yonks – a highly technical chronological term, closely related to the phrase 'Donkey's Years'.
Hi Penny,
Can I suggest that you introduce yourself in the newcomers section – tell us a bit about your background etc… I am sure that there are many here who would like to say hello to you in your own space. 🙂
Dai.
Hi Abi,
Although the general treatment plans may seem quite uniform MM is a very individual disease. Although your Dad may seem to be in the 'later' stage it is surprising how well some people respond to treatment… kidney failure included. We have some people on this board who have started with similar symptoms to your Dad who have responded well to treatments and are still going relatively strongly. I was certainly in an advanced stage when I was finally diagnosed but my problem was bone damage rather than kidneys… which, touch wood, I have never had any problems with.
Take notes and ask questions… if you don't understand then say so. You will most likely be introduced to a lead nurse at some stage early in the process, ask for some time to sit down with them and ask questions or clarify what you think you know… although they are very busy they normally have far more time for individual cases and questions than the consultant… not only that, they are used to your position and will make time to put your mind at ease regarding processes and procedures.
So will we. 🙂
Where are you and what hospital will your Dad be attending… there may well be someone here who can point you in the right direction re lead nurses and other helpful staff.
The initial shock can be devastating but you will soon learn the ropes and how best to proceed… the best advice I can offer at this time is to stay positive… scorn negative vibes and don't allow or encourage any sort of funereal atmosphere at home… especially in front of your Dad.
Stay strong, focus on the first steps and I wish your Dad a long, long journey with good bouts of remission. 😎
Dai.
My Dear Eve,
Wonderful news… at long last you have something tangible and long term to celebrate. I say long term because I know how worried you have been for such a long time without any real encouragement from treatments. Well now you have and it proves that Slim's body is fighting this d**ned disease… fighting and winning.
I appreciate that he has a long way to go but now he has a platform to fight from… if his body can respond to this treatment then it can respond to others… the final 2 cycles may well put him in an even better position to ready him for the road ahead… I hope that it is a long road and while it is never easy it at least proves he is fit enough to travel.
I am so very pleased for both of you. 😎 😀 🙂
Much love,
Dai.
I could please you by offering SPION KOP Eve but its two words so I'll offer ONIO.
Leaving you ION??? Deja Vu anyone?
Dai.
I could please you by offering SPION KOP Eve but its two words so I'll offer ONION.
Leaving you ION??? Deja Vu anyone?
Dai.
Thank you friends,
From the M42 services to the conference was closer than home but Janet was concerned that my immune system might be compromised by others. I am off to see my GP this morning.. feeling better than I have for days (but still wheezy).
I am back for my first consultants meeting next Monday and amongst all the good news from that meeting I mentioned that I had a 'cough' and she told me to 'let it ride'. Fair enough… but my first six weeks of remission has been dominated by this infection and I want rid of it.
Dai.
So near yet so far…
We set out this morning hoping for the best… I still had my cough but much improved over the past few days. When I got in the car I had a coughing fit which I put down to the change in atmosphere or temperature… I had another when we stopped to fill up with diesel but not as bad… then we stopped for a cup of tea at the services on the M42 and had another… at which point Janet pulled the plug… and i was more than happy to comply.
So I'm back home and will go see my GP tomorrow (I put off going earlier in the week because i was/am feeling a lot better excepting the niggling cough/sputum discharge).
Que sera… I know I did the right thing by coming home but I still feel guilty.
Another time I hope.
Dai.
🙂 I am happy to report that while David hasn't logged in or replied (and I was beginning to get quite concerned) I have just seen David's reply in the '9th Of November' thread in 'General' and it is dated Sunday 6th November @ 11:48am… so wherever he is it has nothing to do with the tragic accident local to his home.
Dai.
I will make the decision tomorrow (or rather my GP will) but my attendance is in doubt because my chest infection is hanging on after three weeks of coughing and hacking. My GP gave me anti-biotics 3 weeks ago which were superseded at the end of that week by the hospital medics with two lots of 7 day anti-b's… 9 days later and I am still coughing up gunge and don't feel up to going to the local shops, never mind a conference in Birmingham.
As I say I am going to see my GP tomorrow and I'll be guided by him… if its a no I'll email Craig tomorrow… a pity because I've been looking forward to this for quite a time – I'd be more understanding if it was treatment or MM related but I went into remission on October 3rd and I've been down with this infection ever since.:-(
Dai.
Thank you all, especially Eve for getting the ball rolling and keeping it going. 🙂
You have certainly given me food for thought and I shall re-read all your comments, suggestions, opinions and experiences. From what I can tell from Craig's original post and the agenda of the conference he/they want to know how their work can be of help to us as individuals and the individualisation of treatment from the work they carry out on behalf of the hospitals. They want this paraphrased into a short report based on the patient's perspective. I believe I can put something together based on this thread and other POV and arguments put forward on the forum during this past year.
For me the biggest problem lies in us knowing exactly what they do, what they can do in the future and what influence they carry in terms of offering services and procedures that help us maximise individualisation of treatment in the short and long term futures.
I imagine I will put my short perspective together on Tuesday 8th of November… so please keep all contributions coming until Tuesday am. 😎
Dai.
Hi Eve,
I would welcome any input by the way of ideas, questions or experiences. They are asking for a short (I imagine 20 minutes) contribution on the topic of the 'Patients Experience'. Janet has been asking me about the practicalities of the day but I can tell her very little as I just don't know. I have been waiting on further instructions from Craig Webster and coincidentally received an e:mail from him today which says:
[b][i]Hi Dai,
How are you doing? Are you still available for next week? Do you need any help from me?
Cheers
Cr[/b]aig[/i]
The day has been organised by Craig… he posted here on the forum stating:
'[i]I'm in the process of organising a meeting on the "Multi Disciplinary Approach to Multiple Myeloma" the outline of the days is below.
We are scientists and clinicians from a wide variety of backgrounds that work together to provide services. Whilst not generally serving patients directly I believe it is vital that we get the views of patients on the services we provide. I'm therefore looking for a volunteer to come to our meeting and give us the patient perspective on the laboratory side of MM. [/i]'
After a good while (and a repost from Craig trying to boost interest) I volunteered on the basis that my attendance would be determined by my health at the time. I emailed Craig on the 23rd August confirming my attendance (complete with the health condition clause). As I said on this Forum at the time:
[b]13.30 – Multiple Myeloma ? A Patient Perspective[/b]
'Will be my perspective on how we can be helped on our path towards individualisation of treatments by laboratory and technical services – especially, or specifically, on how we can be proactive in the management of our treatments. We will need guidance about the work of the labs – what they do, what they can offer and how we, as individuals patients, can influence the decision makers to best practice on our behalf. '
Well I have yet to receive any information re: guidance about the works of the labs… but I will e-mail Craig again. As for the rest of it… over to you folks! 😎 😀
If you have any idea, views, opinions, suggestions etc., then please post them here. Don't worry about sounding ignorant or naive etc… this will be a sounding board for ideas… from which I can hopefully gather a general feeling from the forum with one or two specific questions.
I truly and profoundly welcome any input. 🙂
Dai.
[b]The outline of the day:[/b]
Association for Clinical Biochemistry West Midlands Region
Wednesday 9th November 2011
Event Suite, thinktank Science Museum, Millennium Point, Birmingham B4 7XG
Joint Scientific Meeting with the Royal College of Pathologists
10.00 Registration & Coffee
10.40 Introduction and welcome.
Morning session ? Robert Gaddie Award and RCPath President?s Lecture
Chair: Dr Clare Ford
10.45 Grade A Trainee Presentations for the Robert Gaddie Award
11.45 Multidisciplinary Approach to provision of pathology services – Professor Archie Prentice
12.30 Lunch
Afternoon session ? Multidisciplinary Approach to Multiple Myeloma – Chair: Craig Webster
[i][b]13.30 Multiple Myeloma ? A Patient Perspective (Thomas Crowther)[/b][/i]
14.10 Shared Care Pathways and the Diagnosis of MM and MGUS
14.50 Tests for polyclonal and monoclonal immunoglobulins in the diagnosis and management of myeloma Professor Mark Drayson
15.20 Tea
15.40 Myeloma – New test for an old disease and new application of an old test S Anandram, Stephen Harding, Supratik Basu
16.10 Molecular Techniques and Their Uses in Multiple Myeloma
16.40 Close
Hi Debs…
I was just wondering about the Revlimid maintenance therapy as you are recovering from your SCT. Does it have any side-effects? I would have thought you have enough on your plate without the complication of accessorised treatment. 😐
But hey!!! If it gives added value to your recovery by way of making it stronger and longer then all well and good. 😎
Glad to see you posting and energised (your half-term itinerary sounds like an interesting but exhausting time). I expect a quick sprint up Pen-Y-Ghent by Easter. 😀
Dai.
