I'm New Here!

I'm new here...have read posts from others. I was diagnosed by my family doctor in August 2017. I went to see an Oncologist in the Winter of 2017 who confirmed I have, "Chronic Lymphocytic Leukemia" CANCER. Ugh. I told my son's then and they accompanied me to an appointment, (That was supportive for me). The Oncologist stated, "You have the good Cancer, slow moving.". Cancer is Cancer no matter how you slice it! I live on Cape Cod, MA and want to go to Boston, MA. I made an appointment at Dana Farber however due to a snow storm had to cancel. Does anyone know of a Hospital in Boston who specializes in this type of Cancer? Thank you, Roberta

[Jph02006]

I'd stick with Dana Farber. I have had very good experience with them.

John

[maggiesgrandmom]

Alot of people here can identify with everything you are feeling. So glad your sons are supportive and helpful. Almost all of us hate the term "good cancer" ! The other thing is many of us have a local hematologist oncologist and then a further away specialist. Hopefully you can find a local doctor who will work with one from Dana Farber. Good luck and keep reading and asking questions.

[caven]

Hi: Regardless of inconvenience of extra travel time & potentially extra cost, I can think of NO location better than Dana Farber in your region. If you're accepted there as a patient then that move alone is extending the quantity & quality of your life ~ that's where your access to clinical trials might make <all> the difference. Best wishes, Caven

[gp7591]

Roberta- Thank you for your post- and you are in the right place for great, up to date information and recommendations from people who are dealing with CLL. I live outside Philadelphia, so I go to the University of Pennsylvania- where the renowned Dr. Anthony Mato trained (my doctor was his boss and teaches CLL medicine at Penn), but I have read many good comments about Dana Farber in Boston for CLL. That is one of the top places in the country and I highly recommend that as your first choice. The best thing you can do is find a genuine, experienced CLL specialist- not just an oncologist/hematologist. CLL specialists see CLL patients every day- and are often involved in research (and certainly up to date on current developments in CLL). A regular oncologist/hematologist may be smart, but may also not be totally up to date on all the latest CLL research- which is crucial. Go to Dana Farber. I think you'll be very well served there. Wishing you good health!! Best, G

[maggiesgrandmom in reply to gp7591]

Hi Gene, Who is your dr. going to be now that Dr. Mato has left? Do you know where he went? I am not sure who to go. I feel like Dr. Porter is not as "interested" in CLL because he takes care of many more serious cases.

Thanks

Janice

West Chester

[gp7591 in reply to maggiesgrandmom]

janicelee- Mr doctor is Dr. Stephen Schuster at Penn. He trained Dr. Mato. I tried to get an appointment with Dr. Mato last Fall, but he had stopped taking patients because he was about to leave and go to Memorial Sloan Kettering in New York. Dr. Schuster trained Mato and teaches CLL medicine at Penn. He is also listed on several of the research papers Mato did on CLL clinical trials at Penn, so I think he's a CLL expert. I like Dr. Schuster, although his schedule is very hectic. If you think you want to switch to Schuster at Penn, always try to get a MORNING appointment; by the early-mid afternoon, he's usually running behind by at least one hour or more. Penn is a highly respected medical center, the best in the Philadelphia and tri-state area of PA, NJ and DE. Other options are Fox Chase outside Philly, which is also good and to go to see Mato in New York, but that would involve some travel. Where are you a patient now? I think Penn is the best bet in this area and it is nationally renowned. They are the developers of the T-cell therapy which has been used on CLL patients and is considered "breakthrough" treatment. Let me know what you decide to do... Wishing you good health! -G

[Mcpill]

Wishing you well. I too live near Boston for which I am so thankful. Tufts Medical Center is excellent for blood cancers, including CLL. I see Dr, Kenneth Miller at Tufts, and am very happy with my treatment there. I am 17p del, diagnosed in March, 2014, Started Imbruvica April 2015, and switched to Venclexta Sept. 2017. Entire staff at Tufts is excellent, and I have never regretted my decision to go there. Being in Boston provides access to many excellent facilities. Good luck with whichever you choose.

S

[MsLockYourPosts Passed Volunteer]

You can't do much better than Dr. Jennifer Brown and her team at Dana Farber! Once you are established there you could work backwards and ask for a referral to someone closer to home for routine follow up if that is too far to travel on a regular basis. Weather where you are presents challenges that some of us don't have to deal with.