Hi Eve,
I believe that the NHS is a wonderful institution within their doors… but the second you are outside of their walls you are out of sight and out of mind. With a lot of conditions, MM to the fore, you need follow up and support, desperately so at times.
Many such occasions have proven to me that from the moment you leave the consulting room you are out of sight and out of mind… what do I base this on? Well the sight of my consultant scrying the computer screen for bloods results and any other developments since the last visit.
We sometimes have this romantic notion of in depth group meetings of medics who pore over our case studies, looking for developments and results, with conversations that look at alternatives and support networks that keep us uppermost in mind and making themselves ready to discuss with us our progress and the choices available as and when we need them.
If each unit had a couple of dedicated lead nurses that checked up and checked in with us… looking to ensure that we are following regimes, that we have the right level of care and support (for the carers as much as the patients) and that we fully understand where we are and where we are going with our treatments and MM in general. These dedicated nurses would have access to other support networks, including MacMillan and social services etc…
I swear that that is what it was like three years ago when I first came to Nottingham but now?
Yes Tom… they are grateful when you vacate a bed… almost to the point of moving you on and out for the flimsiest of reasons… the cutbacks are kicking in… big-time and in areas where they should not be applicable (or so we were promised).
My best to Slim and yourself Eve… and here is to months of nothingness… just slow recovery and monthly clinics.8-)
Dai.
Hi Jean,
I fully understand your concerns… you want to know what is available and how it will affect Frank. I also understand Frank's viewpoint… he doesn't want to have to accept a treatment that will make him miserable for 4,5 or even 6 cycles… especially if the side-effects, in this case PN, become a semi-permanent condition of his living. I think he is being sensible to wait for the consult on Monday… to see what is available, be it alternative drugs or reductions in dosage.
:-0 🙁 :-0
I have just deleted about 500 words of reply… I am angry for you… let's leave it at that until after Monday.
Regards and heartfelt sympathy. 🙂
Dai.
Hi Liz,
I don't often see Prof Russell but he was excellent during my harvest, not hesitating to sign off on 2 courses of Plerixafor to ensure I got the minimum 2 million cells for my SCT. His 'bedside manner' is supposedly a bit abrupt but I have always found him approachable. I usually see Dr Cathy Williams or Dr Jenny Byrne… both very good, especially Dr Williams who is acknowledged as a Myeloma specialist.
Hopefully we will bump into each other at clinic or the new support group someday soon.:-)
Dai.
Hi David,
Wendy has it right… NICE approve Revlimid as a treatment for relapsed patients after Velcade. Its use as a maintenance drug is dependent on local or national trials etc., not as a right. My SCT failed after only 10 months… I have often wondered what would have happened if I had been receiving a maintenance back up such as Revlimid. We will never know but the random selection process for maintenance seems a tad unfair if it is seen to work for those who have access to it.:-(
Dsi.
Hi Jean,
I had a similar experience to Frank when I started CDT, with what I now know to be the start of PN (Peripheral Neuropathy) problems. My feet were worse than my hands and it wasn't until I was on Velcade that it became pretty bad… to the point where I had to have the dose lowered twice.
It may be that the Thalidomide dose might have to be lowered… but I would think hard and very, very long if it comes to abandoning it altogether. I stuck with CDT and it got me into complete remission from a Kappa Light Chain reading of 3,500 in just 4 Cycles. Yes, it left me with PN but considering where we are, what we have and where we are going I felt it was a price worth paying. To abandon a very good treatment in order to alleviate a side-effect (unless it is truly unbearable) is, for me, a short-sighted option.
CDT was not pleasant… like Frank I felt that my body was taken over and I often wondered what good it was doing when it felt so strange and at times so bad. But CDT has the 'C'… and Cyclophosphamide is a chemotherapy… and all the temporary side-effects that goes with it. My GP told me that my body would feel that it was taking a battering and so it proved… but the end result was so worth it.
Obviously you will have to discuss the treatment with the registrar and your consultant but I urge you to be cautious about abandoning the treatment at such an early stage. There aren't that many treatments available (although there are some exciting new developments about to come online) and there are no guarantees that the others will do any better (or they would have been first choice instead of CDT).
My mantra was[b] 'Whatever It Takes'[/b]… and I meant it. My PN is no fun… but I'm still here and the good points far outweigh the bad. 🙂
Regards
Dai.
Hi Ali,
Due to an infection from a badly fitted Hickman Line (it leaked anti-biotic under my skin) I ended up Neutropenic and my harvest had to be cancelled. They managed to replace my Hickman Line at the same time as taking the infected line out (after four days of being neutropenic) but It was too close to Xmas to start the harvest procedure again and get me in and out for my SCT before Xmas… so we waited until after the holidays. The harvest procedure was prolonged and it took five days on the machine, plus two shots of the super-drug Plerixafor, to get the minimum of 2 million stem cells.
From the end of my CDT treatment, early October, to the start of my SCT, mid-March, took 5.5 months and I remained in full remission throughout. I understand your concerns re: your Mum's pp's but the medics will be keeping a close eye on proceedings.
I too am at Nottingham City and Hickman Line not withstanding my harvest and SCT procedure went very smoothly and my care and medical back-up was first-class. The facilities and the haematology department's purpose built wards are superb.
I wish your Mum all the best for her SCT… stay positive and think towards getting her home and the recovery that will hopefully lead to a long and productive remission.8-)
Regards 🙂
Dai.
Hi Keith,
Regarding the meds for life, I have already broached that subject and the answer seems to be yes. Rev & Dex are therapies, not chemotherapies… therefore you take them until they stop working (median for those who suit the treatment is currently 30 months). I know that there is nothing official beyond Rev & Dex but there are trials and of course any successful previous treatments.
CDT worked marvellously well for me… so I will ask about that when the time comes… but even then.. if it does suit and work I imagine there will be a maintenance therapy involved.
Carfilzomib looks good… my consultant was bullish about it when I tried (and failed due to failing to get 5% Myeloma in my urine, after three attempts, before the trial closed) to get on it after my Velcade relapse. She said that unlike Revlimid, which damps down but doesn't eradicate MM, a fixed number of Cycles of Carfilzomib actually knocks MM right back… giving Rev & Dex (taken in conjunction with Carfilzomib) a longer run with few MM PP's or Light Chains to worry about.
If we can last on Rev & Dex until Carfllzomib is licensed here (looks like 18 months or so) then there is a good chance of a Rev & Dex extension beyond the 30 month median.
So there is hope… and other good looking therapies coming on line in the next couple of years.8-) 🙂
I'm not being new age here but I strongly recommend that you go to Amazon and order yourself a copy of the DVD 'The Secret'… for positivity and the 'Law Of Attraction' it really is superb.8-)
Regards
Dai.
Hi Keith,
I am sorry that your suspicions have been confirmed.:-(
I wish you luck with the Rev & Dex… I am on Cycle 4 and so far so good.8-)
Enjoy your holiday… and then on with whatever it takes to last through to Carfilzomib and the other good looking treatments about to come online.:-)
Dai.
Hi Jen,
Bone lesions are very common amongst MM'ers… some more than others. By the time I was diagnosed with MM I had already had a vertebrae blasted away by radiotherapy due to it crumbling and pressing against my spinal cord. At diagnosis I had two tumours on my head but my frontline treatment CDT, soon go rid of them and now I have two small craters.
Welcome to the board… I wish you were not here but as circumstances have forced you this way I hope that we can be of help with advice based on experience and friendship for free.
Where are you and where is your Dad being treated?
Regards to you and your family:-)
Dai.
Hi Andy,
You are right, its not a big jump but it is going the right way and that's all the matters… it shows the medicines are winning and a couple more little jumps and you will be in the 'end zone'. When I was on Velcade I was told that the magic number was 18… 18 or below was the end zone… so at 35 you are not far off.
My Revlimid numbers came down from 311 to 156 then went back up to 225… I carried that number for 3 weeks… not knowing (and I suspect neither did my medics because they only seem to check my file on the day of my consult) that an interim FreeLight test showed that the numbers had started coming back down with a reading of 170(ish). My last reading was 130 (ish)… which shows a double dip… some kind of consistency, which is what I want to see. I still have to get the numbers right down (to 18 or lower if I can) but like yours they are going the right way and that will do for me.
I do appreciate that there is a big difference inasmuch as I just need to get my light chains down and keep them down.. whereas you need to get them to a maintained level to allow you to go forward with your next procedure… your SCT… but I feel that that is not far off now. Something is working and there is no reason to doubt that that something will carry you through to the magic number and the start of your harvest. 😎
Regards
Dai.
Hi Liz,
How did Kev get on with his Velcade injection?
Although the actual infusion only took five seconds we were often in the daycase unit for a couple of hours. Firstly we had to play 'hunt the vein' for the cannula and then start the saline drip.. then we had to wait for the Velcade to come down from the pharmacy and after two nurses had confirmed my details etcetera we finally had the infusion… followed by another five to ten minutes of saline to wash it through.:-(
If we were lucky and all of the elements came together we could be in and out in forty-five minutes… but the first infusion of each cycle always took at least a couple of hours.:-)
Please tell me your waiting time was short… the subcut injection painless and easy and that you were in and out in less than an hour.8-)
Dai.
Welcome home indeed Slim… just think back a year to all that nonsense you had to put up with and the sense of 'where is this all leading to'? Well its led you to here… a place where you find yourself totally rebooted with brand new stem cells building up your energy centre and offering a whole new slice of life.
It is going to take time… a couple of months at least until you start to feel something like and another four or five months after that until you feel completely human… but it is going to be worth the wait. The hard part is over and now you really do have to exercise patience and restraint.
As the American singer songwriter Woody Guthrie used to say… 'Take it easy but take it'.
Take it Slim. 😎
Dai.
When I was finally diagnosed with MM I raised the Q of hereditary links and my consultant told me that there was no evidence of MM being hereditary.
I have noted an American article about a link between MM and MGUS in families but we are talking about small numbers. As someone has already pointed out… if MM is so rare then the chances of hereditary links should be minimal but the evidence from a few people on this site shows that there is a case for further examination of evidence.
The trouble is there must have been quite a few cases where family members have died of misdiagnosed cancer… I went close myself but managed to escape from Wales and a diagnosis of 'Secondary Bone Cancer, Primary Unknown'. My Wales based Consultant had given me a prognosis of 'No Further Treatment or Exploration'… telling me that I had to accept that unless the primary showed itself in time for it to be treated that I would die of the secondary bone cancer. His actual words at the end of the consult (I ended it) were: 'There is a good chance that I will see you on my mortuary slab and still not know what your primary cancer was'.
I ended the consult there and then… I got home and rang my GP (also a musician friend) and he withdrew me from my consultant's 'care' the next day. Five weeks later I was in Nottingham… three weeks later I had been diagnosed and the rest is history.
We moved to Nottingham three years to this day.. the best move we have ever made… even though we desperately miss Fishguard, Pembrokeshire and Wales in general… and of course all our wonderfully supportive friends. 🙂
My children have decided not to push for testing at this moment but they will be keeping a weather eye on developments in MM. My father died of Lung Cancer at the age of 57… I am now 58 and I am determined to get to 60+. 😎
Dai.
Hi Antoinette,
Welcome to the forum, if not to its reason for existing. As you can see for yourself this is a very welcoming and supportive place to discuss your diagnosis and the treatments and procedures you will be following down the years.
According to the leading MM medics in the USA (where most new research, innovations and drugs begin) MM will be downgraded from a terminal to a chronic disease within the next 5 years. For this downgrade to take place the average, or median, survival rate must reach 10 years. There are a plethora of new medicines, both chemotherapies and major therapies, on trial at the moment that look like helping to achieve this median. Just over 7 years ago there were only 2 to 3 options available for MM patients… now there are several, with several more about to come online.
At the moment the drugs and procedures available to Uk patients are governed by a government body called NICE. NICE guarantee funding for the following order of treatments:
Frontline Treatment: (CDT… RCD & other variations etc).
SCT (Stem Cell Transplant)
Velcade
2nd SCT (if enough cells were harvested)
Revlimid
Variations of the above or 'trial' treatments
While the cost covering is welcome the above order does not always fit with the idea of MM being an 'individual' disease and the necessary flexibility can be problematic… although MM consultants seem to be very good at building flexibility into our treatment regimes.
But… the new drugs on trial at the moment will soon be licensed in the USA and normally reach us, & European Licenses approximately a year to 18 months after the USA.
As I see it (and this is very much a personal opinion) the pace and efficacy of the development of these new drugs will extend the median to its 10 year 'chronic' status within 5 years… and while the medics are loathe to talk about 'cures', I believe that something akin to a 'cure' will occur within the next 7 to 10 years. Of course, it may not be a cure in the accepted sense but a series of treatments that knock MM back, time and time again, suppressing the disease for a long, long time.
This is the hope and IMHO not a folorn hope. You are 39… you are young and fit… with a little good fortune & success with each of your treatments, you coulld be one of the new generation of MM patients who find themselves with a wide range of treatments available before and after Revlimid. The first of these new 'wonder' drugs looks like being 'Carfilzomib' which works in partnership with Revlimid and reports from trials suggest that it could extend, to the point of doubling, the efficacy and duration of the Revlimid treatment. At present the median for Revlimid is 30 months and growing (as reports come in from patients on Revlimid showing increases in the median due to the comparitive 'newness' of Revlimid).
I have met one person who is 12 years down the line and still going strong. My wife, Janet, and I met a woman at the Nottingham InfoDAY who had just passed her 6th year on Revlimid (started on a trial and carried on). These are the stories that give us all hope…. of course there are failures, of course there are no guarantees… but I truly believe that these 'hopes' will soon be commonplace experiences… and there is no reason to believe that you will not be in the forefront of this new generation.
Positivity, belief and sparing no time or thoughts on negativity should be your first aim. Positivity works… think positive and you will reap its rewards… think negative and that is what you will get… its the Law of Attraction and I for one believe in this law.
I wish you every success in your MM journey and all of us here will try to help you with any enquiries through our own experiences and knowledge… and if we don't know then we do know someone who does… Ellen and her wonderful team at Myeloma UK. 😎 Please take some time to fully explore this site and download the freely available INFOnotes… they are remarkably helpful.
Regards 🙂
Dai.
Hi Ann & Peter,
Myeloma 101 – Nutshells – I suggest you look for a more detailed explanation elsewhere on the main site.
There are two main types of Myeloma… Heavy Chain & Light Chain.
Heavy chain Myeloma is measured by Paraproteins.
Light Chain Myeloma (Officially Bence Jones Myeloma) is measured by Kappa Light Chains.
Light chains have bigger numbers … as a rough and most likely inaccurate example – don't get frightened if one person with heavy chain myeloma talks about having a Paraprotein reading of 38 and a Bence Jones Myeloma patient talks about a reading of 540… both are high readings but as a starting point they might be about the same. I started my Bence Jones Myeloma adventure with a reading of 3,500… I was in a very poor state… but I was down to 0 after 3 cycles and in complete remission (CR) after 4 cycles.
I was diagnosed with Secondary Bone Cancer – Primary Unknown in April 08 and stayed with that diagnosis until I escaped from my beloved Wales on May 30th 09 and sought out treatment at Nottingham where I was correctly diagnosed with MM on June 20th 09. I received a first class explanation of Bence Jones Myeloma and started my frontline CTD treatment on July 2nd 09.
The only good thing to happen to me while still in Wales is the 6 days of Radiotherapy I received to zap a tumour that had crushed a vertebrae onto my spine and was touching my spinal cord… my back spasms were of such intensity that I literally left deep tooth marks on a Harry Potter hard cover. But after the 6 high dose zaps I was walking for the first time in 3 weeks and walking freely for the first time in 6 months.. 6 months of agony and hell.
So I hope that the radiotherapy has the same effect for Peter. The sudden freedom from pain and the ability to walk unaided (albeit an inch or so shorter) was unbelievably wonderful… let's hope Peter feels the same way.:-)
Dai.
