Sept. 18th support group with David Siegel, MD as speaker

    I just want to say first that I am writing the words and opinions of someone else. Many doctors in the MM field, probably all medical fields, have differing opinions and their own preferred treatment advice based on their research and what they’ve seen in their practices and patients. I hope that some of this information is helpful and hopeful to people. Dr. Siegel has been treating MM since the 1980’s. He became my husband’s doctor in March of 2007. We love the big lug. That’s not to say that I always agree with him, but I have seen, first hand, how brilliant he is and how much he cares about his patients. Plus, he’s pretty damn funny.

    He started off the meeting saying he knows that the question he always gets is “what’s new and on the horizon for treating MM?” So, he went into that. He talked about Pomalidomide being the most recently FDA approved drug. For those who don’t know, this is a close cousin to Revlimid and in the IMID group of drugs.  He then mentioned Panabinostat (Farydak), which is due to be approved soon and is a HDAC inhibitor like vorinostat(Zolinza). He then spent some time talking about  the monoclonal antibody drugs and T-cell therapy. Elotuzamab is the 1st monoclonal antibody drug. He said they are made by injecting mice with MM cells and taking their spleens out to harvest the antibodies they made. These antibodies are then spliced and altered to include a human component so they work on humans and then given to the MM patient. He also said that there is a scientist at U Penn, Carl Jung, that is attaching a patient’s own collected T-cells to a monoclonal antibody to try to kill off the MM cells. It was really interesting stuff. He said the hardest thing about developing a monoclonal antibody for MM is trying to find a target on the cells that all MM’ers have. They haven’t found one yet. Some people express CD38 or CD19 but not everyone. Also, it has to be a target/protein that the cell needs. If it is one that it doesn’t really need, it can shut down production of it and therefore that monoclonal antibody drug will not work. It also has to be a target that is safe to go after. There is a cancer testis antigen that is present in the cells of 50% of MM’er’s. Problem is, it is also found in the heart so you would damage the heart by targeting that antigen. He told us that 10 or so years from now, the treatment of MM will be totally different than it is now.

    Someone asked if auto transplant is still all that necessary. As some of you know, our MM doctors send everyone who passes the pre-tests to auto transplant, unless they refuse. I don’t know if they have an age cut-off, but if they do, it’s up there. Dr. S said that a MAJOR MM center/hospital, which I hesitate to name, was all about trying to prove that autos were not as necessary now with the novel drugs we have for MM today. He said that very recently, after their own study turned out to prove them wrong, they are going back on that. He said the science shows that overall survival is better in patients who auto transplant up front instead of later or not at all. He said it is the cheapest, most effective and proven way to go and he pointed to a woman sitting right behind me that has been in remission for 20 years from one auto. He stated that in a very small amount of cases, auto seems to cure patients. (she may very well be one of them). Others get long remissions and stable disease and you’re not in that “lottery” if you don’t do it. We also talked about maintenance. Now, this may get controversial, so I am going to remind you, “don’t shoot the messenger.” As long as I’ve known Doc S, he has been about quality of life. He wants his patients to take that trip to wherever and live as great a life as they can. He tries very hard to let them do the things they want to do. This is another thing Tim and I witnessed first hand when Tim was on chemo. Doc. S does not believe in maintenance after auto transplant. That said, his co-worker, David Vesole does. He used to put everyone on low dose Rev. after transplant. Last he spoke at our group, he now bases it on risk factors and such so it’s not everyone anymore. Siegel rarely or never uses it. I am not going to use quotations here although most of what I am saying is exactly his words, but he told us that he sees no definitive evidence that it improves overall survival. And, although it may extend the TTP (time to progression)  a little, he feels the side effect profiles don’t warrant it. These are toxic drugs with lots of side effects, including risk of other cancers, and people can feel like crud on them. He went so far as to say, when I mentioned that there is thinking that that drug is “used up” for you when you relapse that he thinks that some of those patients don’t respond well to other drugs too when they relapse. Yikes, scary words. Other doctors have tried, I’m sure, but no one has convinced him that maintenance after auto is worth it. Now, that’s when people are in remission or have stable disease. If the auto didn’t work well, that’s not maintenance if you are put on chemo, that’s treatment. He ended that conversation with saying that when he TREATS someone with Revlimid, and it’s working, he keeps them on it. He just doesn’t automatically put people, who are in remission or a type of dormant state, (my words), on chemo.
   He mentioned that he thinks Dex is the most dangerous MM drug. This shocked me and I wanted to ask why, but didn’t get the chance. I’m thinking it’s probably largely due to how much it weakens the immune system, making patients so at risk for illness and infection, but, Dex has tons of side effects so I don’t know what his reasoning is, or if that is his reasoning. Lots of downsides. That being said, he said it is also a VERY important drug that makes almost all of the MM drugs work better. He cited a study where Pomalidomide was given to patients who were not responding to Rev or Velcade. There was an 8% response rate with that arm and a 28% response rate when Dex was added. You can’t argue with 3 and 1/2 times the response rate. ( maybe the danger he talks about is due to domestic violence, that Dex being evil stuff for some)

   A recently diagnosed woman asked a question about being diagnosed at stage 3. Doc. S said that the Durie Salmon staging system can show how sick a person is at dx, but it matters nothing to him about anything else, including overall survival. The ISS system has a few more markers that make it a bit more relevant , but the thing that affects survival the most is how a person responds to treatment. He said that even a lot of the chromosomal errors are shown not to be as important as they once were thought to be. Velcade levels the playing field for many of them. He did mention that the 17 P deletion was a tricky one though.

   Someone asked about what kind of diet she should have her husband on. He remarked that he has found no diet that works on MM DOCTORS( I did say he was a big lug). He does not get too into diet or alternative stuff, but said that, of course, the healthier and fitter you are, the better off you are. You should eat healthy so you don’t get diabetes and coronary artery disease, etc. because it will always be harder to treat someone who has other health issues to contend with. They will have a higher incidence of many of the side effects and risks of treatment.

   As I wrote on the “Age 50 and under” MM Facebook site, he talked about pregnancy and MM. He said when a person is smoldering or stable/in remission, it is because their own immune system has not given up the fight against MM and is keeping it under control. A woman’s body goes into a deep state of immune suppression when she gets pregnant so her body does not reject the fetus. He has seen 2 women with smoldering MM whose MM “exploded” (his word) when they got pregnant. A very scary thought indeed. Several women commented on that FB post that they were diagnosed while pregnant or soon after having a child.

   He talked about the measles vaccine that has been in the MM news lately. He said the woman that it worked for now has a recurrence of the plasmacytoma on her skull. I had not heard that and secretly hope he was not talking about the woman I’d read about who seems to have been cured with it, but it sure sounded like the same case and I concede he is much more “in the know” about MM than I am. He explained that measles, as well as the coxsackie virus, are “sucked up” by MM cells. Giving a mega dose of that virus can make the cells so sick when they suck so much of it up, that they die. He said this is a promising direction of MM treatment and hopefully can be made to work even better. (BTW, we did not talk about this part yesterday, but I have read that you don’t want measles antibodies floating around in your body if this is to work. If you have an auto, you may want to bow out of being revaccinated for measles.)

   We talked about allos. We had a few people there who’d had them. I asked if our transplant center was doing them with related haplo-matches. This is when you don’t have a perfect sibling match. A parent, sibling, or a child can be a half match and they do things to make it less dangerous, in terms of GVHD. He said that a 10/10 unrelated donor would be chosen before a haplo, but, that a related haplo was about as safe as a 9/10 unrelated donor. He said that HUMC is doing more haplos for MM patients than any other center. WOOT WOOT. I liked hearing that.

   An aside here: it pays to stay on good terms with your family. That ship has sailed/sunk with Tim’s family, but I’m sure they’d pony up a few cells if needed. His sister is a full match, but, starting to collect health issues herself.  OY!

So, what else? It was SUCH a great meeting and I took notes because I thought it was such good and current information, I wanted to share with y’all.

    Oh, someone mentioned a rash from Rev and said she was allergic. He corrected her. He said that all the IMIDS cause rashes in many people. It is not a true allergy reaction. It is possible to be allergic to them, but, these “functional rashes” are not always indicative of an allergy and sometimes the drug can be continued at a lower does or a different one, like Pomalidomide, can be tried.

    Towards the end of the meeting, one gentleman asked him when he thought MM would be considered a “chronic disease.” He said, it already is a chronic disease for some people. Look how long some of you have had this. You can live for 20 years and more. He said that for some people, it is a curable disease, and unfortunately, for others it is still a fatal disease.

I think that’s it folks. If I remember anything else that seems important, I will add it here, but I think that’s all the important stuff.

Again, please understand, where opinions have been repeated here, “your mileage may vary”. Many times, this is not a case of what’s right or wrong, it’s just different. Statistics and studies tell a lot of the story, but every doctor has seen different things happen with his patients and that goes a long way towards forming their opinions on what the best treatment options are. Doctor Siegel mentioned that same type of thing when he was talking about chromosomal issues. There are ALWAYS exceptions. A “high risk” person can respond to chemo very well. You just never know. MM is not one disease, as he says quite often now.

TGIF y’all. Have a great weekend!