Hi Bridget,
I am angry for you… angry with your tumour for forming just when you seemed to be finding a little breathing space… angry because it is one step froward, two steps back… but not for long I am sure.
You say the tumour is deep… I suppose they now have to identify if the tumour is myeloma related or a secondary, unrelated type. As you know, when I relapsed in the spring, confirmed in April. I was hoping for a maintenance therapy to hold back the rise of my kappa light chains but they found a tumour on my sternum which 'complicated' my condition because it was in a 'very difficult' area to treat… I was told to hope that it was myeloma related because the preferred treatment, Velcade, could possibly take care of the tumour.
I was fortunate, it was myeloma related and the tumour, which was growing like topsy, disappeared during the first 2 Cycles of treatment. I do hope that your tumour is myeloma related and easier to treat under existing regimes rather than start on a second course of treatment. Saying that, I am speaking because I am angry for you… it may be that the tumour can be treated with radiotherapy relatively easily… if there is such a thing. I just want it dealt with and you back on course with as little disruption to your life as possible.
Your tumour, my rant… but I'll stay angry with your tumour until it gives up and goes away.
Dai.
Hi Eve,
Quick question… what strength of Velcade have they started Slim on?
I started on 2.79 for the first two Cycles… 2.1 for the third and 1.49 for the fourth and fifth… each reduction being necessitated by side-effects… something to watch out for and to consider. I'm glad they started high because it obviously worked in bringing my kappa light chains right down… but since the reductions the drop has slowed dramatically – so it is worth sticking with it as long as possible.
Dai.
Hi Gaye,
Just in case you look in… today's weather (Wednesday) is better this morning in the south but has the promise of showers later, so if you are venturing in to the garden get out early. 😀
I imagine you are now limited to your normal medications… plus any extra needed day by day… I hope that you are both comfortable and stable but not too zapped.:-S
Do you have your own computer/lap-top or is there a communal/shared facility? These are just questions and observations that pop to mind, I'm not expecting answers.. but it would be lovely to hear from you now and again, if or when you feel up to it.:-)
Dai. xxx
Hi Eve,
My Velcade experience has had its drawbacks in terms of side-effects but to be fair it has worked very well… spectacularly well in fact, in the reduction of my kappa light chains… which is the primary purpose after all. I went from 246 to 13 after 2 cycles and 13 to 11 after the next (under 18 is the Complete Response marker so the slow down to chipping away at the rest is to be expected, if slightly frustrating). My consultant is on holiday and I will be away when she returns, so we won't meet up until the 12th September… where I hope to find out about progress from cycles 4 & 5.
My consultant wants me to have all 8 Cycles… aiming to knock the KLC's down to somewhere near 0… remembering that I only had one chance at SCT's so this is for a bit of remission for me (6/12 months… and I'll take it). 😎
Finding the right dosage was the key to creating an efficacy/quality of life balance and I think that they have just about found that now. Hopefully Slim will have a gentler start than me but saying that… it might have felt a tad brutal but it more than did its job.
Velcade is a magical drug and if it does its job while allowing Slim some time to recover as well then it will have served a dual purpose.
The beginning of each Cycle is time consuming… the consultant signs off the dose at the consultancy (say 10.30) for the cycle and then the pharmacy makes it up… there is usually a 2/3 hour wait (we usually go into town for a couple of hours… well, Janet does, while I curl up with a book (the curling bit not always voluntary but there you go)… then the procedure takes place about 1pm (ish). The following three injections of the cycle are pretty quick 1/1.5 hours tops… so its only the first one of each cycle that is time consuming.
Like many others my veins are 'difficult' in the extreme and I struggle each time… but the nurses on the Day-Care Unit are great with the hand-warmers etc., (Janet makes me wear a thermal glove from the house to the unit) but I am minded to ask for a Picc Line when I return from holiday up until the end of treatment because the back of my hands are two large patches of purple through overuse and creativity.
Please ask if there are any specifics you want to know… I will help if I can.:-)
Best wishes to Slim.
Dai.
Hi Keith,
I am sure that there is relief all round that you have moved through the sticky bits to home-base.
Take your time with your recovery… but you know that.:-)
I have enjoyed quite a few good walks over Loftus and Saltburn Cliffs in my time, having a good friend who lives on Loftus Cliffs… the air along that coast is bracing to say the least,:-D
The best of luck and I hope everything moves along nicely with no hitches or glitches.:-)
Dai.
Today (Monday) and Thursday for infusions of Velcade and then 3 weeks off (including rest days and holidays). I am going to have to whinge and bear it because unfortunately the first two infusions of this cycle (5) have left me feeling awful… which is strange because the strength is the same as Cycle 4 and that was a breeze (apart from the unrelated leg problems).
Last 2 days spent in bed because I have not felt like doing anything else… especially seeing as my mobility is restricted to moving from my bed to the chair or sofa.
The good news is that my ankle and leg are definitely showing signs of reducing in size… I can only hope that this is a general trend and not just related to the amount of rest it is getting.
I must admit my spirits need a lift… recent events have got to me far more than I thought possible. I can deal with most things that happen to me but I have found it hard to cope with/accept the hurts and pains of my friends.
Dai.
[i][b]'You have to understand that those people who are currently undergoing treatment cannot make plans as far ahead as November! Because with the best will in the world they simply do not know if they will be well or undergoing a treatment which makes them feel like sh**[/i]* '[/b]
Min has hit the nail on the head in my case.
Which is my situation exactly… at the moment, if my treatment goes to full length, as advised by my consultant, then I shall be finished by mid-November. It may be that I will feel well enough to attend and contribute but I know that if I have a bad last cycle (mine are hit and miss… my fourth was very easy, my fifth (the present one) has been awful… under the same conditions and at the same strength of toxicity etc., I would be very interested in contributing but there is no way I could commit up until the date itself.
I appreciate that physical attendance is important but perhaps a collection of wish lists or case histories with personal evidence of processes and procedures that the patient would have found helpful (perhaps with some guidelines from your group) could be used either as a back-up or as an alternative.
Dai.
Great news from you Gill and Stephen,
I truly hope that this freedom from pins, needles and their associated attachments is combined with freedom from MM and a meaningful remission.
The best of luck with the blood-works.
Dai.
My Lovely Gaye,
You were a great strength to me when I first came to this site and you remain a great strength to me now.
I can do no more than accept your decision, as much as I would like it to be different… but I know that that would be wrong, just because I find it so hard to think of a world without you in it.
I am sure that the hospice will make you comfortable and will support you through your end of life procedures… none of us could expect more.
I hope you can stay in touch for as long as you can but regardless, I just want you to know just how much I respect you, regard your friendship and support and just how much I have valued your unstinting and unconditional friendship in all the time I have known you.
With all my love and best wishes.
Dai xxx.
Ah well (Mk XCCVIII),
I finally got Doppled and the Doctor was very thorough. Its definitely a DVT and quite a large one by all accounts. I had a nervous moment when he decided to track up into my stomach… but all clear… the DVT is in my upper leg (my bet was nearer down but what do I know).
So continuation on Enoxoparin until my referral to the Warfarin Clinic (by my lead nurse who is also going to supply a couple of compression stockings when I attend for my Velcade tomorrow).
Compression stockings are fun to put on and Janet and I are looking forward to seeing who can bite their tongues the hardest during fitting… at least it is only the one leg this time.
And I can look forward to the home visits from our wonderful District Nurse team after an 18 month gap… they are so very supportive all round.
I hope that the warfarin exercise is a relatively short one (6 months or so) but I won't hold my breath… but saying that my consultant decided enough was enough once my legs were looking good for a while the last time.
Onwards and upwards… and that's just the stocking. 😀
Dai.
Hi Sarah,
I'm banned from driving (by Janet) until they sort my leg out. I was completely and utterly surprised on the way to the hospital, via the scenic country route, when Janet burst into tears saying 'poor, poor Sarah, what she must be going through'. I had to get her to slow down (she wouldn't stop) to wipe her eyes and she followed up with 'I know that I am going to have to deal with the same situation myself sooner or later but she is having to go through it now and I can feel her pain, I really can'.
I chose to let her have her moment and kept quiet for a good couple of miles. Being on the scenic route we passed several farms, one in the middle of harvest. In a field beyond, parked up against a hedge, was a tractor and trailer… the tractor was red. I didn't point it out but the fresh tears in Janets eyes told me I didn't need to.
Love from us both.
Dai.
Hi Mary,
You and Theresa are often in my thoughts and much more so over this week-end when we lost one of our own, Gordon,,, to this damned disease. Like Patrick we never had direct contact and received all his news from our dear friend, his wife Sarah.
Please raise a glass of the black stuff to your Dad on holiday and I hope you thoroughly enjoy your skydive experience… my daughter did one in New Zealand during her gap year and said it was one of the best and most enjoyable experiences of her life,,, the fear factor adding to the occasion.8-)
Best wishes and fondest regards,
Dai. 🙂
Min has hit the nail on the head IMHO. We are subjected to a 'one size fits all' and, thanks to NICE, we also have to have certain treatments in a certain order – for instance:
When I started treatment the order of play was:
CDT – SCT – Velcade – Revlimid
+ various experimental treatments at differing stages of development (Bendamustine etcetera) which may be made available as frontline treatments, or as part of a clinical tria,l followed by the kitchen sink or anything else they can think to throw at it.
[b]Now we are told incessantly that Multiple Myeloma is a very individual disease to which each person will react differently. The same applies to treatments, with each person reacting differently to the different drugs and components.[/b]
If this is true (and we have no reason to doubt this… because it is borne out by clinical evidence and patient experience) then why do we receive the 'one size fits all' treatments, in the order decreed by NICE?
For an individual to receive an individual treatment plan – based on individual factors.. the individuals general health and other characteristics… it would take a lot more time with the consultant, lead nurse etc plus the patients needs, wants and requirements.
I.e. following my CTD, and the excellent response I got from the treatment, I achieved full remission… with no signs of the disease whatsoever… I wanted to wait until the very first signs of the return of myeloma calls until I started the process of Stem Cell Harvest and the ensuing SCT. Under NICE guidelines I could not be guaranteed funding for the harvest and SCT if I waited. The same goes for downline treatments.
Say the consultant and the patient both agreed that it might be desirable and even beneficial to start the next treatment with CDT… because the first round of treatment was so excellent… leaving Velcade and Revlimid etc', for further down the road. Again NICE cannot guarantee that the funding for Velcade and Revlimid will be available if it is not used in the order prescribed…
So let's take Velcade… the drug can be made to measure for the patient… taking into consideration different tests carried out after the first infusion… this way forward will need more time with the consultant, access to the laboratory and lab technicians, including the interim reports which define the next amount of Velcade to be given that maximises the benefits to the patient while keeping the side-effects to a minimum… this would make the response to the patient far more individual… but has time, resource and financial implications.
[b]'One-size fits all', and a prescriptive list of treatments, does not make for an individual response to myeloma… so therefore the mantra of 'this disease is very individual'… becomes a statement of truth but not, unfortunately, a statement of intent.[/b]
Dai.
Why Eve…
If I had a suspicious nature I'd say that behind the flattery you were trying to volunteer me for a job… a specific job that entails putting across the Myeloma patient's perspective on the provision of laboratory services and laboratory tests… not to a Myeloma InfoDay, where you are surrounded and supported by like minds… but to the: Association for Clinical Biochemistry West Midlands Region in a joint scientific meeting with the Royal College of Pathologists no less.
No pressure then…
Of course, one of the bees in my particular bonnet is the lack of individual markers that would allow a more flexible response to the individualisation of doses and cycles in treatments… which would mean having more laboratory testing to determine levels in the individual patient etcetera… which might have relevance.
Sounds interesting anyway.
Dai.
Sarah,
From the second you told us that Gordon was coming home I have been waiting on this post. In the meantime I have been willing strength and positive thoughts, simple prayers and my kindred love towards you both.
I wish I'd known Gordon… I thought of him so often this week-end… in the bed in your living room with the amazing harvest taking place outside the window… without him.
Sympathy, empathy and love.
Dai. xxx
