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ASH reflections

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The IMF support group leaders ended ASH together late Monday evening gathered together to watch and share the IMWG conference debate between four of the world's myeloma leaders. Robin did her usual amazing job of organizing the logistics and we didn't even have to leave our hotel. The evening was a perfect ending and cemented the camaraderie which we had developed over four days. Our final hugs were warm and meaningful.

I have read the blogs of the other attendees and agree with all of their superlatives. In their own way, each one told of what they witnessed at ASH and emphasized the promise of new treatments for myeloma. It is interesting how we could all observe the same oral presentation or poster and remember different aspects of it. Reading all the blogs gives a bigger picture of the elephant and the picture is promising. Myeloma is under serious attack and this horrible cancer WILL be cured. This Grampy is not a tweeter, but I certainly learned the power of social networking. Thanks to Yelak, Cindy, Robin, and others for getting the message out in a way which is new to me.

I have had the privilege of attending other annual ASH meetings so have some perspective on the event as a whole. The most noticeable change this year is the huge interest in each and every myeloma session. We SGLs knew it was important to arrive early because many events would be standing room only. The interest in our particular cancer has never been higher. The more minds focused on combating this scourge the better. The more approaches attempted the better. There were nearly 500 posters on myeloma this year, and some of the targets discovered and drugs in early phase studies are especially exciting. We don't care if a great new treatment comes from Germany, Australia, France, Houston, Rochester, or Timbuktu.

Thank you so much IMF for all you do for so many of us. How dismal and dark our short futures would be without your leadership. Cindy expressed her fear and tears quite well in her blog, and explained how those fears were turned into hope when she arrived at her first support group meeting. We can all relate to that and have "been there, done that." On a more personal note, thank you Susie for the foresight in bringing a few SGLs to ASH. Sharing what we know and what we have learned is empowering both to us and to those we help. Lets all keep working together to extend lives and improve their quality.

Jim

Busy Sunday

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Myeloma was very prominent at ASH today with interesting new abstract reports and oral sessions. One of the first impressions we had was the great interest in our cancer. Very large rooms with sessions on myeloma were overflowing, at the same time dozens of simultaneous presentations on other hematologic topics were occurring.

Promising drugs, treatment combinations, and novel trials have been discussed, but I have seen no blockbuster standout at this year's ASH.  Many will not work out. All add to our knowledge base and all are important in combating this wretched cancer.  Clinical trials take time to accrue and eventually "mature". Hopefully by next years meeting, a standout drug will be emerging.  None of this paragraph should be read as discouraging, just realistic. Research and clinical advancements take lots and lots of time.

The two best agents coming are Pomalidamide and Elotuzumab. Pom has great promise to be FDA-approved by February 10 (it's (PDUFA date).   Elo is a monoclonal antibody directed against a substance found on the surface of myeloma cells called cs1. It shows rapid response, and in a group of patients being treated by Dr Paul Richardson an ORR (overall response rate) of 100% was seen. It even shows considerable activity in the 15% of patients with high risk disease.

The next best hope centers on an oral proteosome inhibitor MLN9708 which will also be called ixazomib. It is quite promising in late phase trials. Another oral PI by Onyx called Oprozomib has clinical potential, but also considerable GI toxicity (nausea, vomiting, diarrhea).

This evening foreign journalists from around the world were given an update on important myeloma information being presented at this year's ASH. Some of their questions and comments reflect frustration at unavailability of newer novel agents in their own countries. We were all saddened to learn that an eight year old child was recently confirmed to have multiple myeloma in Brazil. We have made good progress toward a cure, but we still have a long way to go.

Jim


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One day morphs into the next at ASH, but I think today is still technically Saturday. Today's highlight actually occurred this evening as we shared the excitement of IMF's annual research grant awards. In these days of reduced NIH funding it is so gratifying to know that our collective IMF donations are channeled to many bright young minds specifically seeking better treatments for myeloma.

Dr. Ken Anderson gave the first award to a brilliant young colleague of his at Dana Farber. He stirred the room with excitement when he explained that she has discovered and is exploring an entirely new approach to myeloma therapy, a new metabolic pathway and a possible new Achilles Heel to target neoplastic plasma cells. I don't know the pathway, but I do know the brilliance of Dr Anderson. Suffice it to say that if he is excited, then we should all be excited too!

Many awards followed, including the IMF's first junior award to a Chinese researcher. Junior awards are vitally important and serve to keep newly minted Ph.Ds from becoming discouraged at finding no funding, and leaving cancer research altogether. The discouragingly small percentage of grant awards compared to the large number of unfunded grant applications is a major concern at the NCI, and will most certainly worsen as fiscal insanity continues in Washington.

Thank goodness for the IMF. The money which we contribute has been supporting myeloma research funding every year since 1994.

Jim

Interest is high in our disease

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ASH officially begins tomorrow (Saturday) but there were excellent pre-ASH lectures today. Interest is high in our disease and the rooms were full of people from all around the world, many conversing in languages I don't understand. The topic everyone was interested in was the progress we are making in myeloma treatment. Paul Richardson put those advances in excellent perspective when he commented that in the last decade there have been 8 FDA approvals for myeloma treatment. Prior to that there had been no new myeloma drugs approved for 30 years, but as he said, "we still have a long way to go". 

Regarding whether the novel drugs will replace transplants, he felt that they will not replace the procedure, but will serve to enhance it. There seemed to be near uniformity among all the speakers about the value of three-drug combinations....not two (less efficacy), and not four (too much toxicity), but three. 

Hakan Kaya from the Univ of Washington made a very interesting comment regarding allo transplants, considering that he is a transplant specialist. He feels that myeloma will be curable within the next ten years and is opposed to doing allos for myeloma patients because of the high toxicity, including mortality. He said it would be a tragic loss for these patients to die, "who might have lived long enough to be cured."  It is so nice to hear "cure" and myeloma spoken together in the same sentence!  We ARE getting closer.

Jim

Thank you, Celgene

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As I was scurrying through the Atlanta airport last evening and glancing at signs and directions, I saw a blue mural about 15 feet long with an instantly recognizable graphic. All of us wiith myeloma can immediately identify the undulating pattern of rises and spikes of an abnormal SPEP. There it was! The sign was a large greeting to ASH attendees reminding us that myeloma never rests......and neither does Celgene, the company that brought us Revlimid and Pomolidomide. Thank you Celgene. Thank you the greeting, and thank you for what you do. You have saved and extended the lives of countless thousands of us with myeloma, and we are grateful!

 Jim Omel

What are the most important topics?

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ASH is an exciting time of new possible treatments and discoveries for those of us with myeloma. We all know that the next office visit or the next blood draw can throw us back into the awful uncertainty of relapse. Stable disease or even CR can never be a reason to relax and we must always keep in mind what our next personal treatment approach will be.

ASH gives us information to help guide those decisions. It can be so overwhelming, however, that decisions must be made right away on how to best use our limited time. What are the most important topics, and what do I most want to learn? How can I be the most effective advocate for my personal support group and for the thousands of our fellow patients who cannot be here?  My goal will be to gain a better grasp on the best treatments we have, and soon will have, for relapsed disease.

Jim

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