“Twenty-one percent of patients required a second course of these stem-cell mobilizing agents because they failed to collect the target collection number of four million stem cells per kg.”
I admit I get VERY FRUSTRATED when I see articles like this that I know generally, doctors out there, occasionally treating a Myeloma patient will read and totally, utterly, misduplicate it’s ramifications.
So here is the deal, as usual, YOU, in the throes of your cancer diagnosis, MUST advocate for yourself. You will be lulled into “liking” your doctor and “feeling” good around him and so “trust” him. DON’T – not just yet. Not until you have done some serious verification of his credentials to be treating Multiple Myeloma. You will be really glad that you took the time to find the most qualified MM specialist you can avail yourself of. This is still considered a rare disease folks and seeing anyone that treats generally, hematology diseases, is just not good enough. You need someone who KNOWS this disease, someone who is DEDICATED to treating it and working toward your longevity.
Often doctors will completely blow off that radiation and treating you with novel therapies will impede stem cell collection. Why? Because they don’t do it! Nope, they don’t do it. Someone else does. And THOSE DOCTORS shake their heads in dismay at the compounded difficulty you and they now face trying to collect your stem cells. I don’t know why they are not all on the same page around the country, but they are not. When we were told by two doctors after our diagnosis, one the “attending” (she taught him!) of our diagnosing doctor who radiated Dave, that Dave would have trouble collecting because of extensive radiation and we went back to the diagnosing doctor and told him, he completely dismissed it! Completely! He was quite emphatic and shut me down on the discussion.
So what is interesting in this article, is the discussion of rounds of treatment at the time of diagnosis. This is commonly done, but you can see that if you continue this without a stem cell collection within a fairly short period of time, you may be closing the door on a Stem Cell Transplant(s) down the line, which like it or not, is still fairly typical at some point. So poor Dave had both 3 months of Thalidomide AND extensive radiation! We were never told of course, about any of these potential ramifications.
The other thing that sort of blew my mind, was “median 37 days” on growth factor shots! 37 DAYS! Are you kidding me! Holy Crap! First of all, they are painful. Second, they are about $2K per shot! This is not at all an ideal solution folks. It should be about two shots a day for 5 or 6 days. Something just sounds very out of whack to me in this.
Finally, if they are having this much trouble collecting 8 million cells for two transplants (often two attempts to collect cells! 37 median days x TWO, that’s median number of shots of 74!), then I would suggest to you that you make sure you get busy finding your treatment facility and get you cells collected, post haste.
Arkansas collects 20 million for up to 6 SCTs. There are a multitude of reasons that they do this. One of which is the ability to treat you for leukemia should you develop that from the chemo drugs. Not common, but common enough that they have found it is worth collecting 20 Million cells and storing them. They are the only facility (besides Huntsman) that does this.
Bottom line, from my humble perspective… no matter which treatment path you are choosing, get your stem cells collected early in the game, and go to a place that knows what they are doing in the collection process. Ask to speak to the Collection Doc. You can do that you know. We met ours and she had been collecting stem cells in Arkansas for over 20 years. She knows her stuff.
Don’t misunderstand me, getting on Thalidomide or Revlimid at the time of diagnosis is prudent by most accounts, but only to stabilize you while you begin to search for who, where and what you will be doing now that you have entered into the twilight zone of Myelomaville.
If you are “lucky” your doctor sends you directly to a facility like Arkansas and doesn’t touch you. But if not, that’s OK, just don’t let them treat you long term with these cool new novel drugs (and they are cool) without a plan to collect your cells. And don’t you dare buy it when they say something like, “Oh, yeah, Thalidomide does that, but not Revlimid, it’s newer, less toxic.” Or, “We aren’t radiating your long bones so you should be fine.”
I’m really just trying to give you a heads up and I know, you are completely utterly overwhelmed and you don’t like hearing me tell you something that your doctor has presented, is bunk and you need to move on. There is a certain calmness when you feel you have a doctor you can work with and then some bimbo like me comes a long and says, “WHOA…. don’t do that!” I know. I really know and am the last person in the world that wants to add to your stress. But please, this is one of the most important parts of your journey, the beginning, and which road you venture down before you hit the point of no return and your path is firmly entrenched under your feet. Take the time. You have some time, most of you. Use it wisely.
Regardless of whether you will ever do a stem cell transplant and choose to use novel therapies instead, get your cells collected, early in the game, correctly. This will give you options and the freedom to make your own choices instead of having them made for you.
And just for the record Steve, we don’t pay for the cost of these shots out of pocket. No one does here unless they are part of such a small majority of the truly wealthy. It is covered by our private health insurances and even government health insurance through Medicare/Medicaid. But understanding it’s cost is important when we care about rising healthcare costs in general, that in the end, we all pay for either through taxes or rationing of healthcare. That was my main reason for bringing it up, median 37 shots for this procedure when it should and can be a lot less costly, because of poor choices and advice on the part of physicians in how they understand SC collection and MM in general. Some insurance companies probably do balk as well as socialized medicine groups. Its both wasteful and tremendously hard on the patient, but could be ultimately disastrous if cells cannot be collected, for the patient, who would not be able to avail themselves of a potential treatment, which is still the most commonly traveled road, i.e., SCT.
Thanks Paula! Some folks do have trouble collecting even when poor choices on the part of doctors who don’t understand it’s ramifications are made. All I can say is WELL DONE GIRL! I’m thrilled beyond words that you were able to have the opportunity to try something effective in getting your stem cells for a SCT. My understanding of NHS is that it is not all that different than here. You still have to advocate for yourself or have others help you in the process. There are knowledgeable and less knowledgeable physicians around the world no matter what system. It seems to still boil down to being a savvy patient/caregiver team to get through it, for the vast majority. I’m thankful that The Myeloma Beacon put up this article, as aggravating as it is, because at least it gave me the opportunity to write about what I know about it, through experience, and it brings to the attention of some physicians that to keep patients on long term novel therapies in the beginning will impede stem cell collection in the future.
My first stem cell collection attempt sucked – my stems cells did NOTHING. One of the BMT staff said she had encountered this in two other similarly aged patients and in her own opinion (no hard research/trial) it was because there wasn’t enough time inbetween finishing treatment and starting harvesting. (There has been an article since, I think in the Myeloma Beacon stating this.) Because my cell count was practically non existent there was no point trying again with cyclophosphamide and granulocyte-colony stimulating factor (G-CSF) so the hospital had to apply for funding for Plerixafor as it is not approved by NICE for use on the NHS, each trust gets to decide for themselves. This is because it is deemed to be of benefit to so few patients that it wasn’t cost effective even to review. Some trusts offer it, ours didn’t.
Needless to say it was effective and only took a few days of G-SCF as well and a stay in the hospital as I was only the third having it so they wanted to monitor for side effects. There was also no explosive vomiting – which I always find is a plus. ;D
Warm wishes P
Welcome Steve. I’m glad that you like your doctors. I have some friends in the UK with MM and it’s not always as good for them as you describe. Basically what I’m alluding to here is that the patient needs to learn what they can as soon as they can, as there are so many differing opinions on treating MM both in the the UK and the US, and quite frankly the world. This recommendation came from a group out of Italy. France does their own studies, and stuff from the UK as well.
There is no clear cut path in treating MM and a lot of hematologists think they are perfectly fine treating a MM patient once in a while by reading articles in a journal. Many over here do send their patient straight away to someone who is better equipped to treat them.
But there is absolutely nothing more important than finding some docs that you do trust and that specialize in treating this disease. I know a couple MM patients in UK that love Royal Marsden. I haven’t heard of anyone from Oxford Churchill so it’s pretty cool really to make your acquaintance!
Phew! Glad I am in the UK with a National Health Service where I can and do trust my doctors implicitly. The Haemotology team at the Oxford Churchill Hospital under Andy Peniket and Tim Littlewood are second to none. That trust, and it goes both ways in that they too trust me as a patient, is a vital component towards successful treatment and my continuing remission. And I don’t have to worry about the cost of, for example, growth factor shots. I had nine (18, as I had to shots each day).
Thanks Doug and Karen! I surely try. It’s so much to absorb for a new person I just hope they come back as they meander through while on their journey and that when they do, what they are looking for is here or nearby and easily located.
TPN is Total Parenteral Nutrition and there is a whole other thing to have to learn about. Some are much better than others and as Karen says, just one more IV of stuff being pumped in, more opportunities for infection, yadda, yadda, yadda.
Here is my link on the Ice Cubes and Melphalan. Be sure to let that cold get as far back as you can from time to time while you are sucking on the cubes so your throat gets as much coverage as possible as well.
http://www.loripuente.com/2011/04/melphalan-ice-cubes/
i salute you, lori! such important advice, and so many people who don’t know where to start after the devastation of a dx of myeloma. a dear collegue and friend, dx’d with myeloma 2 yrs before hugh, had poor advice about her course of treatment, and was never able to have her stem cells collected until she was near death – they call that “salvage” therapy; the ASCT was not successful and, sadly, she died.
another thing – i keep hearing the phrase, “inevitable mouth sores”, and it drives me up a wall. if anyone is facing an ASCT, PLEASE read lori’s post about chewing on ice for a period prior, during and just after the dose of melphalan; you may be told, “it’s not done here”, or “there’s no scientific evidence” – ridiculous! not only hugh, but every other ASCT pt. we met on the unit during both of hugh’s ASCT’s had NO MOUTH SORES after following our transplant center’s advice about ice. it’s simple – the ice constricts vessels in the mucous membrane lining in the mouth and throat, and, thus protects it from breaking down. this is HUGE; if one cannot eat because of the pain from these lesions, they often get something called, TPN, which is IV nutrition. it can get complicated – who want’s ANOTHER iv, the risk of the TPN leaking into tissue and causing MORE painful sores, and another potential source of infection. and i can garauntee that the TPN cost thousands of dollars more that a few tubs of ice! and it might mean more time in the hospital as well.
okay, i’m off my soapbox, lori, but i know, i feel, the frustration of seeing patients going through NEEDLESS suffering; and i can just imagine what YOU feel, with hearing about so much of it from those who follow your blog. your attempts to enllighten and EMPOWER people to take charge, be their own advocate, and QUESTION EVERYTHING are so appriciated. once again, thank you for such an important post on issues every myeloma pt/cg needs to be aware of.
Excellent advice Lori. I had 2 neulasta shots instead of the series of neupogen. I had no idea why the Huntsman needed all 28M stem cells they cranked out of me….now I know.
Happy Independence to you
Doug