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If you are diagnosed with HepatoSplenic T-Cell Lymphoma, here's where to go

danyabushey
Posts: 6
Joined: Oct 2014

Hello,

Here's my quick story. Let me know if you have any other questions or are looking for specific info. Hepatosplenic T-Cell Lymphoma is extremely rare and aggresive - time is of the essence in treating it, so that's why I'm posting this.

Story

My nephew, Brian, was diagnosed with HSTCL in Feb., 2012, 1 week before his 18th birthday. It was a result of being on Remicade for Crohn's disease. We found a specialist at Memorial Sloan-Kettering Cancer Center in NY (MSKCC) and he provided the chemo protocol (not CHOP) for the children's hospital in our area (Virginia Beach, VA) to implement. Brian underwent 3 rounds of chemo and then had an allo bone marrow transplant in NY at MSKCC on May 30 of that year. It has now been 2.5 years and he is cancer-free and doing great. He returns to MSKCC quarterly for check-ups.

How we found our dr....after doing some internet research, I found very little info but did see a few specific hospitals pop up as having treated patients with HSTCL. I reached out to Dr. Anas Younes, who at the time was the Director of the Lymphoma Dept. at MD Anderson, which is the No. 1 cancer center in the country and had some experience. Based on our closer location to MSKCC, he recommended them. Of note, Dr. Younes moved to MSKCC this past winter; MSKCC is the No. 2 cancer center in the country. At the time, he recommended Dr. Steven Horwitz and after looking him up on the MSKCC website, I knew he was our guy based on his interest and experience with T-Cell Lymphomas. He has treated the most patients with this rare form of lymphoma, and has the best success rate. MSKCC is an amazing facility and I cannot speak highly enough of them. The bone marrow transplant process is extremely tough but the transplant team at MSKCC is the most competent and compassionate medical team you could want. They helped us get our nephew's transplant planned in less than 3 months - they said it was the quickest transplant they've ever accomplished.

Research/FYI

FYI - HSTCL is a very rare and aggressive lymphoma. it is usually a result of several immuno-suppressive drugs such as Remicade and Humira. At this time, an allo bone marrow transplant is the only known "cure" and it's essential to get it rather quickly - after 2-4 rounds of chemo. Not an easy feat when dealing with insurance and trying to navigate a complex healthcare system. But this is because the body needs to be "cancer-free" when you go into the transplant process and HSTCL is so agressive, it typically overrides chemo treatment after 4 rounds. Also, the process for testing family members and friends to see who matches takes a while, so get on it quickly. It cost money to get tested but you have to do it asap. Our nephew ended up getting an anonymous donor and it was easier because he's of Caucasian European descent. Much tougher for other ethnicities, such as Asian and African-American.

Research, research, research - Google the heck out of this disease. Use social media - that's how I found Dr. Younes. I did a #lymphoma search on Twitter and found him. He's active there so he responded quickly. Additionally, I found that the specialists who know what this is will respond almost instantly. My nephew was diagnosed on a Tuesday, I found Dr. Younes on Twitter on Wed. and we emailed that night/the next morning. On Friday morning, I emailed Dr. Horwitz at MSKCC and we had a conference call with him that evening at 6 pm. All of this within 3 days of diagnosis. Don't be bashful or shy about reaching out to doctors directly - this is what they do and what they live for!  And, as I keep stating, time is of the essence with HSTCL.

As I mentioned, it can be tough navigating the various sytems you have to deal with. We had a lot of trouble with the Children's Hospital he was in at first - I think ego played a big role. They wanted to give him the standard, average Lymphoma chemo treatment and talk about making him comfortable. Do NOT let a doctor's ego get in the way of you or your loved one's survival! Every minute, every day counts with HSTCL - past research has shown a 90% mortality rate and average lifespan of 8 mos - 1 year! Keep making phone calls and digging until you can find someone - a nurse, care coordinator, hospital social worker, etc. - that will help advocate for you. Stay on top of the doctors and nurses and ensure all your records are being kept accurately and transferred when necessary. Likewise with insurance - play nice and find someone you can rely on to help you navigate a complicated system. If you need to get approvals on treatment, esp. for out-of-statement, pull together research (such as US News & World Report rankings for best facilities) and make a strong case from the get-go. Doing so will hopefully get you approval the first time around, and let you forego the appeal process.

Please let me know if you have any additional questions. You can ask here, or email me directly at danyabushey@hotmail.com. If you're reading this because you or a loved one has been diagnosed with this terrible disease, just know that there is hope for you!

~Danya

LaureenRitchSTL
Posts: 11
Joined: Apr 2012

Danya, thanks so much for your email & for link to this post!!  

For everyone else, My 48yr. old (46 at diagnosis) husband also HAD this terrible cancer. His story is similiar. He was diagnosed in April 2012. Started chemo immedietly, had 3 in-patient rounds of IVAC chemo, full body irradiation & subsequent Bone marrow transplant on August 2nd, 2012. His brother was a match! This was not an easy proccess & there were moments that we were VERY concerned, but NOT ONCE did we think he was not going to make it! We WERE DETERMINED TO BEAT THIS!! And that's exactly what we did! My husband is cancer free & doing quite well. Danya is right, TIME IS OF THE ESSENCE as well as is the treatment of this cancer!! The protocal for treatment of this cancer is currently exactly what was done for my husband & Danya's nephew, as well as several other survivors that I have become aware of. This protocal is the only known proccess of beating this cancer!! One cannot be rid of this cancer with chop or similiar chemo, it must be one of the stronger combinations such as IVAC. The cancer will NOT stay away without the allogenic Bone Marrow Transplant, immediatly following treatment. An Auto transplant has not been proven to be adequate.

We are in a suburb of St. louis, Mo. We are very lucky to have Siteman Cancer Center/Washington University School of Medicine/Barnes Jewish Hospital very near us. Siteman Cancer Center is ranked as one of the top 10 cancer treatment facilities in the world and Barnes Jewish Hospital is ranked in the top 5 Bone marrow transplant facilities in the U.S. and one of the largest in the world. In addition, Washington University is one of the top biomedical research institutions in the U.S. & is currently ranked 6th for research according to US News & World Report.  Dr. Nancy Bartlett, a renowned Lymphoma specialist whom is highly respected in the field, Dr. Amanda Cashen-our BMT Physician & a large medical team, gave my husband the best care we could have ever asked for. And it would be rediculous of me not to mention the nursing staff whom treated our entire family like one of their own. If you are in the midwest, I highly recommend seeking care from this facility, specifically from Dr. Bartlett.  If you are on the East coast, Danya's recomendation is the way  to go. If you are in Texas, M.D. Anderson is experienced in treating this cancer. On the west coast, I have heard that City Of Hope has treated patients with this cancer. However, regardless of where you are treated, I highly recomend that you ask your team to consult with Dr. Steven Horwitz and/or Dr. Nancy Bartlett. By the way, they are friends! 

Act swiftly, follow your medical teams instructions and BELIEVE!!!   Laureen  

If you would like to reach me, you can do so by emailing me at redelstein@centurytel.net  or call me at 314/974-6713 I also started a support page on Facebook. Just search: Hepatosplenic Tcell Lymphoma HSTCL 

 

danyabushey
Posts: 6
Joined: Oct 2014

Awesome news Laureen! This is wonderful to hear....I was inspired to visit the boards today after learning another young man lost his fight earlier this month, a mere 5 months after diagnosis. 

Many physicians today let their egos get in the way of properly treating their patients - they don't do their own due diligence or research to find out the best way to treat a rare cancer. We went through this with my nephew - our local children's hospital wanted to treat him with CHOP as if it was any type of lymphoma and then talk about making him comfortable. SCREW THEM! He would be dead if we had listened to them and stayed that course. Instead, he's celebrating his 21st birthday next week, will hit his 3-year BMT anniversary in May, is acing his college classes while majoring in environemental sciences and getting ready to do a study abroad program. 

 

Found this link from another poster. Great resource for T-Cell Lymphomas:

http://tcllfoundation.org/resources/

 

If anyone ever has questions or needs anything related to HSTCL, I can be reached at danyabushey@hotmail.com or 757-285-5684. Blessings to all!

~Danya

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