Hi Liz & Kev,
My consultant thought I might get between 3 to 5 years from my SCT based on an excellent response to my frontline treatment but I relapsed after 10 months… so I can both sympathise and empathise with Kev… it knocked us both back and like Kev I had a quiet period of 2 to 3 weeks until my survival mode kicked in and I readied myself for the next treatment.
My advice is to allow him a few weeks of disappointment but then he will need to face the next step… there are 2 or 3 new treatments coming online in the next couple of years and Kev just needs to be there to find the best of those treatments that suits him. Carfilzomib works in conjunction with Revlimid and everyone seems quite bullish about it based on the trial results so far… the manufacturing company is looking for the USA licence in July and we should follow within the next year or 18 months.
I mention these drugs because it shows that there are a plethora of new treatments coming to us soon, with others in the pipeline. The SCT is the UK's big hitter at the moment but Revlimid has a median of 30 months for those that take to it… of course there are no guarantees but 30 months (and getting better as new resukts come in) is 2.5 years… almost good SCT figures, so there is hope for all of us… and Kev has Velcade to come first before Revlimid… so he should be handy for Carfolzomib and the other new drug regimes.
Janet watches me like a hawk… I was about to go into the garden now that it has cooled down (8.15pm) but she just laughed at me… there is no way she will let me loose with a pair of secatuers without her standing behind me and she has no intention of coming into the garden at 8.15pm. Ah well… 😀
Regards
Dai.
As I understand it Pancytopenia is either a hereditary condition or one brought about by treatment, mainly chemotherapy or related treatments. I have had a serious blood problem since early childhood… my treatments and medicines have been varied and sometimes exotic and along with Leukemia, Sickle-Cell Anaemia, and Sideroblastic Anaemia, Pancytopenia was one of the options considered.
It turned out to be a hereditary condition handed down from my Romany ancestors and was held in check by something as simple as Pyridoxine (Vitamin B6) and according to my consultant totally non-related to my MM. Anaemia 'Better Medicine' explains it thus:
[quote]Pancytopenia is a deficiency of all types of blood cells, including white blood cells, red blood cells, and platelets. It occurs when your body cannot produce enough blood cells because the bone marrow stem cells that form blood cells do not function normally. Pancytopenia has widespread effects on the entire body by leading to oxygen shortage as well as problems with immune function. Aplastic anemia is a medical term that refers to a decrease in production of all types of blood cells.
Pancytopenia occurs in two forms: idiopathic, in which the cause is not known, but is often autoimmune, meaning that the body attacks its own tissues as foreign substances; and secondary, often caused by environmental factors. Approximately half of all pancytopenia cases are idiopathic. In other cases, viral infections, radiation or chemotherapy treatments, drug reactions, and exposure to toxins may precipitate the development of pancytopenia.[/quote]
In Keith's case I imagine the second cause most likely… and can most likely be treated by the medics. If medicine caused it then surely medicine can change and cure it.
I wish you the best Keith and hopefully you will be able to report back soon with some good news.:-)
Dai.
Hi Eva and all,
I thought this article might be of relevance and interest.:-)
Dai.
[b]The Myeloma Beacon
May 29, 2012 10:12 am
Forum Highlight – Beacon readers have been discussing the hypothesis that cancer stem cells are the cause of multiple myeloma persistence and relapse. [/b]
[i][b]Day Of Rest Between Melphalan And Stem Cell Infusion
May Not Be Necessary For Myeloma Patie[/i]nts[/b]
[b]~By Virginia Li[/b]
Multiple myeloma patients receiving an infusion of their own stem cells either one day or two days after undergoing treatment with high-dose melphalan demonstrate similar clinical outcomes, according to a recent U.S. study.
The study investigators conclude that a day of rest between treatment with melphalan and stem cell infusion appears not to be necessary. Based on their findings, they recommend that melphalan administration the day before stem cell infusion should be considered as standard of care.
According to Dr. Giampaolo Talamo of the Penn State Hershey Cancer Institute in Hershey, Pennsylvania, and lead investigator of the study, the two most important benefits of giving melphalan as a single dose on the day prior to transplantation are decreased costs and simplification of the treatment process.
?It simplifies the process for patients, doctors, and nurses. Less material like intravenous lines and bags, and less time and supervision spent for the administration of chemotherapy,? said Dr. Talamo. ?Besides cutting the cost of material and personnel, it cuts the cost of the transplant because it requires a day less in the hospital.?
An autologous stem cell transplant is a procedure in which stem cells are harvested from a patient prior to high-dose chemotherapy and later re-infused into the patient?s body to replace the cells that were destroyed by chemotherapy. This procedure is a standard course of treatment for multiple myeloma patients aged 65 years and under.
Melphalan (Alkeran) is the chemotherapeutic agent generally used with stem cell transplants for myeloma patients. According to the study investigators, many treatment centers typically wait at least 24 hours between melphalan administration and stem cell infusion, believing a ?day of rest? in between may be necessary to avoid any possible negative effects of chemotherapy on the re-infused stem cells.
The study investigators point out, however, that the ?schedules of administration are based more often on empiric policies than scientific rationale or data.?
This lack of data led researchers from the Penn State Hershey Cancer Institute and the University of Utah to evaluate whether the timing between treatment with melphalan and an autologous stem cell transplant would have an impact on clinical outcomes.
The study investigators retrospectively analyzed data from 138 myeloma patients treated at the Penn State Hershey Cancer Institute who received high-dose melphalan followed by an autologous stem cell transplant between 2007 and 2010. The median age of the patients was 59 years.
From 2007 to 2008, patients received high-dose melphalan two days prior to stem cell infusion. The policy was then changed, and patients began to receive stem cell infusions the day after receiving melphalan, sometimes as little as eight hours later.
Thirty-four percent of patients were treated with melphalan two days prior to transplantation, while 66 percent received melphalan one day before the transplant. The median dose of melphalan administered (190 mg/m2 two days prior to transplant or 182 mg/m2 one day prior to transplant) and the median number of stem cells infused (4.7 million cells/kg two days after melphalan or 5.1 million cells/kg one day after melphalan) were similar for both groups. Likewise, time until stem cell engraftment and recovery of blood cell counts were similar for the two groups.
Responses were evaluated six to eight weeks following transplantation. The overall response rates for patients who received melphalan two days prior to transplantation and one day prior to transplantation were similar (96 percent versus 95 percent, respectively).
The one-year progression-free survival rates (90 percent versus 87 percent) and one-year overall survival rates (96 percent versus 99 percent) were also similar.
For more information, please see the study in the European Journal of Haematology (abstract).
Hi Deborah,
I have inadvertently given some wrong advice… I said:
?Velcade is a cousin of Thalidomide and like Thalidomide it can cause Peripheral Neuropathy (PN) although reports of Velcade via Subcut lessen this effect.'
Ellen from Myeloma Uk has put me right with:
[quote]This isn't strictly true and Thalidomide and Velcade are quite different drugs, they work in different ways but yes absolutely they can both cause peripheral neuropathy. Revlimid is a cousin of Thalidomide and Carfilzomib is a cousin of Velcade.[/quote]
My point about remission is that Velcade seems to me to be primarily a preparation for the 2nd SCT and any longer term remission is a bonus for those who don't qualify for a second SCT… this is my interpretation based on experiences for myself and of others and is not an official line.
Revlimid on the other hand seems designed to give a longer remission for those that take to it… my consultant told me that Revlimid results are still coming in and altering the median all the time… at present the median is approx: 30 months.
Sorry for the misinformation but we all know better now.:-)
Thanks Ellen. I am only too glad to be put right if I offer wrong or misguided advices. 😎
Dai.
Hi Deborah,
You say that your Mum had Thalidomide based chemotherapy a couple of years ago… I assume this was her frontline treatment? Most likely CDT (Cyclophosphamide – Dexamethasone – Thalidomide) or one of the variants. Did she then have a SCT (Stem Cell Transplant) or was she considered too old? (Normally not offered if over 70 or even younger if there have been other underlying health problems).
Velcade is usually given at this stage as a preparation for the second SCT… that is, the remission is not usually considered as long term (6 -12 months) and is followed by Revlimid which can last considerably longer (18 – 30 months) – my calculations based on experience of other patients.
Velcade used to take about 30 minutes to administer (the actual drug is a 5 second infusion but there is a saline drip before and after). It used to be administered through a cannula in the back of the hand but these days it can be administered subcutaneously,(Subcut) through an injection to the stomach area, which apparently lessens the side-effects considerably but still retains the efficacy.
Velcade is a cousin of Thalidomide and like Thalidomide it can cause Peripheral Neuropathy (PN) although reports of Velcade via Subcut lessen this effect.
Velcade is usually given twice a week (i.e. on Tuesdays and Thursdays) for the first three weeks with a rest week to follow… making it a four week Cycle… with 6 to 8 Cycles in total. Again, usually, Dexamethasone (the steroid) is administered once or twice a week for the full four week cycle. and your Mum will also receive medication for the prevention of shingles. (I have personally known
seven people come through here who have had Velcade and not one has actually had shingles).
Some people sail through Velcade with few problems or side-effects… others find it quite a tough regime… it is a quite individual experience… but the subcut approach makes the procedure and the full experience much gentler than before.
I wish your Mum plain sailing.:-)
Dai.
Hi Eva & Sue & Eve,
Recalling a conversation with one of the registrars regarding the SCT processes and the Mephalan/Cell returns in particular… I was told that the Mephalan is 'scoured' as soon as the medics think it has done its job… that is, by the time the cells are returned the Mephalan has done its job and has been thoroughly washed out of the system.
As I recall I had the Mephalan followed almost immediately by the wash… the next day I received my first bag of cells back… the first of 14 bags (2.1million in total). I felt nauseous but the medication worked. They didn't seem concerned about my food intake but they kept a close eye on my fluids intake and although I thought I was doing well they didn't agree and I was on a saline drip from the moment they finished my cells return.
From all my time on the forum and all the SCT blogs and diaries etc., this process really does prove to be a case of individuality… some sail through the process with hardly a murmur, others seem to have every known pitfall…
I hope that Sue's engraftment improves quickly.. her Neutrofils at just over one shows that the transplant has worked but she needs the support network (platelets etc) to do their job.
As for Slim… we know how tough he can be and he has to do just that.. tough it out, keep drinking for England and get through the 'no man's land' between cell return and the magic 0.1 show in his Neutrofils.
Dai.
[b]Alert: [/b]
Where would we be without little niggles and interruptions? In a far happier place I imagine.
Yesterday my temperature clocked 38.20 and stayed there for several hours… on a Friday – again… but I didn't phone it in (as they insist I do) because there was no upward movement and my chest was clear… but I was having trouble with my waterworks (very slow) and I felt dozy. So I drank for Wales… and eventually my temperature dropped to 37.30 at which point (6pm) I took a couple of paracetamol which did the trick and brought me back down to normal. I haven't taken any more paracetamol but I have kept up on the fluids and my temperature has remained normal.
Too much information? Not really, because I have been here before and ended up in hospital… unduly and unnecessarily because I simply had not drunk enough liquids. Liquid intake is paramount for MMer's at any time… add this hot weather and trouble looms… I still feel groggy and I am watching both my liquid intake and my temperature but hopefully common sense and 3 litres+ of liquids will see me through the week-end and back to normal (whatever that may be) by Monday.
Dai.
Hi Teresa,
E-Mail received thank you… very interesting and very lucid, aimed as it is at the people who matter… us.
Many thanks again, I will keep an eye on any new reports/developments coming from Canada.
Dai.
Hi Paul,
I must say that you are very calm given the circumstances of your treatments so far but DT Pace certainly seems like a big hitter and you don't need to come down too much to start the harvest and SCT processes.
Also, just because your treatments were part of your frontline therapies doesn't mean that you can't try them again when you finally relapse from your long term SCT remission. Velcade is the first stop but it is there because NICE places it there… its role has never meant to gain a potential medium/long-term remission (like a SCT or Revlimid) it is a short, sharp shock treatment to prepare for the 2nd SCT… but NICE insist that everyone has it in the order they have promised payment for… so we all get it whether we need it or not. Revlmid is another matter, so are the new drugs on the horizon such as Carfilzomib et al.
I read several articles regarding CT Pace and fond this one interesting:
[quote]
DTPACE Is Effective Induction for Autotransplantation in Patients With Myeloma.
NEW YORK (Reuters Health) Aug 18 – In patients with previously treated multiple myeloma, the combination of thalidomide and high-dose oral dexamethasone with a 4-day infusion of cytotoxic chemotherapy is effective induction therapy before autotransplantation.
Under a protocol called DTPACE, a multicenter American team treated 236 myeloma patients with 4 days of dexamethasone and thalidomide and 4 days of continuous-infusion cisplatin, doxorubicin,
cyclophosphamide, and etoposide. All patients had previously been treated with at least 2 cycles of standard therapy, but 148 had shown progressive disease during therapy and 55 had chromosome 13
abnormalities.
Led by Dr. Choon-Kee Lee of the University of Arkansas for Medical Sciences in Little Rock, Arkansas, the researchers report their results in the July 15th issue of the Journal of Clinical Oncology.
According to the study, after 2 cycles of DTPACE, 32% of patients hadachieved partial remission, and 16% had achieved complete ornear-complete remission. The authors call this response rate "remarkable."
Higher response rates were observed in patients with high lactate dehydrogenase levels and in those who received 100% of the DTPACE dose for 2 cycles. Patients with chromosome 13 abnormalities responded as well as other patients, the investigators said.
"The combination of thalidomide with chemotherapeutic agents shows outstanding response rates in patients with myeloma who experience relapse after or are completely or partially refractory to standard chemotherapy," the authors write.
They added, "This study shows a significant therapeutic potential of
the DTPACE regimen and reveals a novel way of managing patients with
myeloma, especially those with high-risk features."[/quote]
Looks good to me… so I wish you all the best with it.:-) 😎
Dai.
Hi Theresa,
I'd be very interested indeed.
Send away… and thank you very much indeed 🙂
Dai.
Min,
I can only take a wild guess of what its like for you on your side of MM… so I won't even bother to try.
Suffice to say that I truly do care about your well being… your physical and mental health and your coping levels.
I know you are a strong independent woman but the 'independent' part has taken on a new meaning, with a different mindset of skills and mental attributes… unasked for and totally unprepared for.
But it is obvious that you have taken them on, as uncomfortable and as unfamiliar as they indubitably are.
I, and I imagine all your MM friends, are truly grateful that you are still with us… through facebook and your occasional forays to the forum. You owe us nothing… you always gave far more than you received and what you gave was both precious and on the money… every time.
So please avoid anything that isn't positive for you… and any activity or communication that doesn't leave you feeling better than when you started.
[b]On a personal note I highly recommend that you purchase a copy of 'The Secret' DVD (available from Amazon for approx: £12.50 inc., postage – go for one of the UK distributors). [/b]
Watch it at least twice and go back to it often… I truly believe you are ready for it and Janet swears by it. She has amazed me with her mindset and attitude since she bought it and bought into it… she kept on at me until I watched it and now I am an advocate.
Stay as strong as you can and stay busy (as you most obviously are. Holiday as often as you can until the need for a more mundane existence pleases you.
Much love
Dai & Janet.
Hi Eve,
I hope all is as well as can be expected at this stage. One tip… try and encourage Slim to take on fluids. I know it is difficult, even water tastes vile and is difficult to swallow in anything other than small sips… but the alternative is the fluids by IV… which means being attached to the pump and stanchion. This means that every visit to the bathroom means unplugging the pump, wrapping up the leads and finding the best path to the ensuite. So enforced water torture should become a persoanal challenge, one I am certain he is up to.
I concocted several associated 'events' with points for times etc., my SCT olympics which amused me (and hopefully those who read my blog) – but sometime, during the mid -SCT section (four days or so in my case) the fun element was replaced by real urgency.. and then the whole process became anything but fun.
Slim will have to develop a mindset of 'whatever it takes' with a temporary suspension of dignities and standards. Incidents and accidents will have to be borne as events outside of his control and accepted as such… they are highly unlikely to occur again outside this procedure… not until the next SCT many years down the line.
Slim is now well on his way.. no going back now but it really will be over very quickly… the morning the magic marker of 0.1 or above is returned means the the whole process has worked… and as long as the other crucial bloods (neutrofils, platelets etc.,) rise in tandem then 0.5 means preparation for home (I was made to stay an extra day for my platelets to reach an accepted level).
I was home 17 days after receiving the Mephalan… Stem Cells back on day three… 'sticky patch' days 9 to 12… 0.1 on day 14 and home on day 17. 😎
Simples (ish).
Much love to you both my friends.:-)
Dai.
Hi Peggy,
I developed Peripheral Neuropathy following my CDT (Cyclophosphamide, Dexamethasone and Thalidomide) frontline treatment, exacerbated by my Velcade treatment. It still remains with me although, like my Tinnitus, I manage to blank it out for most of the time. But I too have difficulty lifting my legs… I know I have extensive bone marrow loss in my left femur but my right leg is just as bad, if not worse. I find stepping up difficult… and putting on trousers has become an artform without Janet's patient assistance. I always try to stay independent when dressing but I do need Janet's help when we have limited time, especially on the ere so slow 'sockputtingon' activity.:-S
I don't know if my problem, like yours, is MM related… be it PN or otherwise… but I have an appointment next week with an orthopaedic consultant regarding two current small but perfectly formed fractures in my shoulder and shoulder blade… and I will broach the subject then.:-)
Dai.
PS – I can walk approximately 200 yards in a straight line before seizing up but I have fond memories of my rambling and walking days… especially the views from Ben Nevis, Snowdon and Helvelyn… but my most favourite was Kinder Scout, especially the Downfall. 😎
Jean, Eliz, Theresa, Jo, Tom & Rosie,
Thank you for your lovely supportive replies. 🙂
Yes, I am trying to be honest and reflect how I am feeling but it does sometimes also feel a tad self-indulgent… but I'll decide to be kind and allow myself that small sin. 😉
Today was a bump and run day… being DexDay TM and all. 😀
I have realised that DexDay TM has to be given over to a lie-in, followed by a day in the recliner or at the desk… watching films or being creative, if the muse allows… because going out is not an option due to the several changes caused by the 'sweats'. I sweat whether I sit still or try being active… I don't necessarily lack energy, it just comes out regardless of activity. So we tend to watch TV series or films, with timeouts for pastimes and small jobs.
The only time that I ventured out on a DexDay Tm, (for an interim bloods test and a consult with my lead nurse) the phlebotomist became concerned because she thought I was having a cardiac arrest and other clinic visitors cast me worried looks… and I changed 'T' Shirts 3 times in the hour I was there (plus another 2 changes in the car on arrival and departure). 😛
So Tuesday has been nominated my day of rest and Sunday, (along with Monday my most energetic day) has been promoted to 'Up and at them' day.
Topsy Turvy but what isn't in MM land? :-0
I love life… and I refuse to dilute it by looking over my shoulder at what might have been or gazing at a not so distant horizon and thinking of what might never be… life is what it is… wonderful beyond words and I intend to treat it with a sense of joy and wonder… day by wonderful day.8-)
Thank you my friends. 🙂
Dai.
I regret that I have never been but by all accounts from friends it is a delightful place for relaxing and taking it easy in the very best of convivial settings.
So… you must enjoy yourselves, you must go easy and take it slowly and come back recharged and essentially happy.
Simples.8-)
Dai.
