Rest in peace, Ellen Stovall

Take a moment to read this article about Ellen Stovall, diagnosed with Hodgkin's lymphoma at age 24, battled three bouts with cancer, and spent more than three decades advocating to improve the care of cancer patients.  Ellen passed away earlier this week as a result of heart complications related to her cancer treatment.  May she rest in peace and may we continue to support and celebrate her important work.

Just a quick post today to share this very important article from The Wall Street Journal which appeared on line today and was posted by Kathy Guisti, founder of The Multiple Myeloma Research Foundation. I'm thankful for all of those who are bringing attention to multiple myeloma and the tremendous progress that is being made in advancing a cure.

Time flies.  As I look back on my last post, nearly two years ago, there's so much that has transpired.

With a new year, I'm resolving to do a better job of keeping this blog up to date, as during the years my family has been living with multiple myeloma, many people have reached out to share their stories, and to let me know that our story has helped them.

Here's what has happened since February 2014....

In May 2014, I was able to accompany Deana to her appointment with Dr. Agha.  Unfortunately, Deana was not responding to the treatment I described in my February post.  Several others had been tried, and they too, were proving ineffective.  Dr. Agha told me he was worried and that he felt we needed to find a promising phase 2 clinical trial.  He had investigated a possibility at Dana Farber, but it wasn't a fit for our situation.  At this time, the main goal was to postpone the time until Deana would need a second stem cell transplant.

Since I suspected this prognosis was going to be the case, I had taken some measures in the week prior to this appointment to reach out to Winship Cancer Center and specifically, Dr. Sagar Lonial, who I had met shortly after Deana was diagnosed when I attended a multiple myeloma workshop offered by The Multiple Myeloma Research Foundation.  (If one of these sessions is offered in your area, I highly encourage you to attend.)

When I first met Dr. Lonial, I shared with him the basics of Deana's case, and he immediately offered his help should it ever be needed.  The time had come.  In addition to the acquaintance with Dr. Lonial, one of my Athens (Georgia) friends was a patient of his.  Now, it is never fortunate to have a friend with cancer...however, it was fortunate that she was able to assist with getting me through to the nurse immediately.

As we left UPMC on May 5th, Deana's records were already headed to Winship and an appointment with Dr. Lonial was being arranged.  As a world renowned multiple myeloma researcher, Dr. Lonial maintains a very full schedule, so we considered ourselves extremely lucky to get an appointment with him for June 6th.

Deana flew in from Pittsburgh the night before and as always, we had a grand time together.  We enjoyed a delicious Italian dinner and spent the night at the beautiful Emory Conference Center hotel. It is an oasis in the midst of Atlanta and I highly recommend it.

We arrived at Winship where everyone we encountered was incredibly welcoming and friendly.  The appointment with Dr. Lonial was all we hoped for.  He was not alarmed by the situation and felt there were viable options to explore. We had a lengthy conversation about all measures to postpone the time to transplant, since Deana only has enough stem cells banked for one more transplant.  (As an important note, we learned that Winship's protocol for stem cell harvest is to obtain 15 million cells and to divide them into three bags of 5 million -- enough for three transplants.  UPMC apparently separates the 15 million into two bags of 7.5 million -- enough for two transplants.  I suggest anyone preparing for stem cell harvest investigate this matter carefully.  I'm not up to date on the current recommendations and would not want to offer incorrect information.  I wish that I would have known this prior to Deana's harvest so that we could have maximized our options.)

Dr. Lonial suggested a bone marrow biopsy and blood work so that he could get his own results which would enable him to choose the best option.  Deana was not a huge fan of the bone marrow biopsy at that point, although the subsequent ones at UPMC were much better than the very painful first one.  She was assured that the Winship team are expert at BMBs and that she would be given good drugs to help.  Whatever they gave her, I want some.  She was quite the character after we left Winship.  Even now, she tells me that she asks when she can have her next BMB because the experience is so good there.

My memory gets a bit hazy here, as I had a few life changes occur after we left Winship that day.  In brief, Dr. Lonial reviewed the results and was able to get Deana into one of his clinical trials.  She began treatment in August and within two cycles, she was back in remission.  Yes, we were (and remain) incredibly thankful. For me, the most amazing part was Deana sharing that Dr. Lonial told her that he knew the drug was going to work, because he had sent some of her samples to his lab and had them tested with the drug.  What he wasn't certain of was how Deana would respond to the drug in terms of side effects.  I cried when I heard this because it solidified that when facing cancer, it is so important to have access to the great minds doing the groundbreaking work on your particular form.  I cannot say it enough -- we are so thankful.

So, for the last 14 months, the new normal consists of Deana heading to Atlanta every three weeks for her appointment, which takes about 5 hours.  The success she is experiencing with this drug has caused her to be a bit of a celebrity at Winship.  She's been filmed for a video and her story was featured the Summer 2015 issue of the Winship magazine.  Last month, I was finally able to accompany her to her appointment and was thankful for the opportunity to express my gratitude to all of the wonderful people who are taking such good care of my sister.

If you are interested in being entertained by Deana's accounts of her travels to and from Atlanta, although she doesn't post often, she has some humorous stories on her Caring Bridge site.  I continue to be inspired by my sister and her strength and determination.  I am not sure that I would be as brave in these circumstances.

I hope that 2016 will be the year a cure for cancer is found.  Until that time, though, I will do what I can to raise awareness and to help others who are in this fight.

The latest on Deana

I've been remiss in providing updates of any kind, most especially as they relate to Deana.  There's been a lot going on and it has been concerning and a bit difficult to grapple with.

It had been my hope that we would be blessed with a progression free survival.  Unfortunately, that does not appear to be the plan for Team BTHO MM.

My sister Darrie, who serves as our Assistant Team Captain, wrote the most recent caring bridge update, which I will condense here and then try to add the latest in terms that make sense.  (We haven't been terrific about updating caring bridge of late, but here's the link if you want to register for updates -- http://www.caringbridge.org/visit/deanachiusano)

Deana's IGA numbers continued to rise at the end of 2013, even with the more aggressive treatment, until late January, when they went down approximately 300...this being a good sign that perhaps her "slow responding" body was starting to do what  Dr. Agha wanted.

Deana and Darrie saw Dr Agha on Monday, January 27th and it was decided that Deana would have two more rounds of the aggressive treatments and he would then re-evaluate.  In addition the plan was to also continue to give her  IVIG once a month during the cold/flu season as Deana can't seem to shake the cold she has even while on antibiotics.

Dr Agha's plan is to get the numbers to a place where he is happy (he didn't share what his magic number is) and then use a different drug, Pomalyst, as maintenance since Deana's body got used to the other regimen. He had already gotten Pomalyst approved with the insurance company since Deana was not responding to the treatments and was ready to switch paths but had decided to hold off until she started maintenance again.

And that was that...until last week, when on February 3rd, Deana's hemoglobin dropped to something in the 7 range, which is clearly not good. (And her IgA went up again...) She received two units of blood that day.  If memory serves, this may the first blood transfusion since her SCT in November 2011, so this rattled us.

On February 3rd, Dr. Agha decided to cease chemo for the moment while he worked to get things under control -- yes, that is a technical term.  Deana responded well to the transfusion, and as of this Monday, her hemoglobin was back up at a respectable 10.8.

Somewhere in the midst of all of this, (these are the times it would be great to be geographically closer to the my sisters), Dr. Agha and Deana decided to switch the drug regimen now, rather than wait.  Thus, this week, Deana began taking Pomalyst.

Pomalyst is a fairly new drug in the MM battle.  I'm incredibly thankful for the work of the Multiple Myeloma Research Foundation --  www.themmrf.org, which was critical in developing this drug and getting it to patients as quickly as possible.

There's more to say about Pomalyst, the MMRF, and those who are at the front line of advancing a cure.  I'm going to save that, though, for a future post.

What does cancer smell like?

I enjoyed this piece from the New York Times magazine.  Always pleased to read about developments that may finally bring about an end to cancer.

http://www.nytimes.com/2013/11/24/magazine/what-does-cancer-smell-like.html

Bruce Feiler's Journey with Cancer -- a good read

I thought this article well done and wanted to share it.  A really good piece on living with cancer.
http://www.nytimes.com/2013/12/08/fashion/Cancer-Survivors-five-year-Celebration-Day-known-as-cancerversary.html

Everyone can get in on the action...

My niece, Clare, is a very central member of Team BTHO MM.  Deana was diagnosed a few months before Clare turned 8.  When told of her mother's illness, Clare's immediate reaction was disappointment that a planned family trip to Germany would have to be postponed.  As my sister said at the time, of the possible outcomes from such a conversation, that was a good one.

Several days later, when the first box of "No one fights alone" merchandise arrived, Clare traveled around the block, distributing rubber bracelets and encouraging all the neighbors to join the fight.

Now, she's taken her efforts a step further, crafting bracelets with the Rainbow Loom, apparently a very hot product in the children's craft market.  Clare sold these bracelets and raised $212 in support of Team BTHO MM's participation in the 2013 NYC Marathon.  Through the generosity of one of my dear friends, that money has been matched and will now bring $424 in support of research to advance a cure.  For more details on the work of the Multiple Myeloma Research Foundation, visit www.themmrf.org

To say I have been tremendously proud of Clare is an understatement. She has handled our life with MM with maturity and grace beyond her now 10 years.  For her, my sister, and all rest of us in the MM fight, my efforts shall continue.