10 replies to this topic

[markmendonca]

is anyone live in boston that has cml ? i am taking tasigna 800mg a day as of sunday they called me and said to stop taking it for a few weeks because my liver was at 118.. there are great people here and they told me that this happens.i am trying to get a new doc. in boston now i am not happy with the onc i have at mgh... they tell u what to do and i need someone to explain it to me this is my live. they said my  hair would not thin out and it did... i told him my back and hip hurts so much he looked at me and said realy u r the first and did not give me notthing for the pain . it just sucks

                                                                                                                       Mark Mendonca

[MACELPatient]

Mark

I'm from Taunton and I have CEL (not CML).  I am currently being treated at BIDMC.  Wonderful Oncology/Hematology Department there if you need any references.

As far as pain, the only thing I take is Naproxen, and that is rare now.  I am >18m since my diagnosis and in full remission(zero evidence of genetic mutation in BMB).  I take 400mg of Gleevec daily with minor side effects (GI issues mostly)

[markmendonca]

i do not no what CEL is but i am so happy you are doing fine. i just got off the phone with Skittles she is so nice and makes you feel happy and full of hope.. thanks Etaunton for replying back some day i hope we can talk on the phone. and what would be great is if we ALL CAN GET A CUP OF COFFEE .. that would be great someday. GOD love you all.

[Ly1je2ma3]

Hi!  Thought I'd introduce myself, Lynda, from Waltham & have CML.  I have a female friend with CML in Taunton.  What's going on in Taunton?  She and I are both about 5 yrs out.

We both go to Dana Farber (amazing place) but have different doctors.

[Judy2]

Hi Everyone from the Boston area. I also live in the Boston area, maybe someday we could form a group. I know I am very anxious about the whole CML thing, I wonder if a "face to face" support group would help. I'm curious as to who are the top oncs at DFCI ? How do they go about things there? Is there a support team or do you just meet with your onc.? Are you assigned a social worker or is that something that is done only if you request it? Are you seen in a clinic or a private doctor's office? I guess I'm just feeling a little lost. Thanks for any help.

Judy

[MACELPatient]

CEL is Chronic Eosinophilic Leukemia.  You can see my posts under the "Rare Leukemias" section.  Basically I have a genetic mutation that causes my marrow to produce too many eosinophils.  Gleevec was found to work wonders on my form, even more so than those with CML, and in 2008 Gleevec was approved as a treatment for my disease.  I go about my normal life, with little anxieties or worries.  I don't know why, I guess I have faith in my drug.  I see my doctor every 4m now.  My next appointment is actually in 2 weeks.  I see Dr Tzakanus at BIDMC.  You all have a great resource here to help find information on CML.  I have only heard of a few people with my disease and information is harder to find.  That's the one thing I've taken upon myself.  I learn all that I can about my disease.  No idea how or why it came about.  Bum luck I guess.  I'm on here at least a few times a week so I'll keep an eye out.

[markmendonca]

i think we all should meet up for coffee my wife can cook some great azores food or just  coffee .. we could do this once every 2 months????? but we should do it what do u all think ?? i live in peabody Ma. we can meet in the middle some were i am ok with that to

[Ly1je2ma3]

Sorry it took so long.  I'm having trouble navagating the site (I know, no excuses). 

Mark,

I have not met anyone with CEL.  Actually, I was unaware of that particular disease.   Have you tried calling the local LLS (Natick) and ask for their 1st Connection assist?  They may be able to hook you up.  Being on Gleevec, you still belong here with us too.  It's gret it's working so well for you.   I go every 3 months and my next DF visit is 12/2.  Earlier than yours?

My friend, Kathy, has a friend in Montreal on Tasagna.  I'm sure, if interested, she'd ask her to email you.  In addition, one of the 2 guys I recently met also switched.  He's in FL now but he'd talk to you, I'm sure.  BTW: Kathy is well connected.  Is the 1st Connection contact for the CML LLS patients and was volunteer of the yr a couple of yrs ago.

I think we should meet too.  I notified another friend on the cape, have a friend in Taunton and recently met 2 guys (1 on Tasagna) with CML locally.  They both spend the winter in FL but I'll email them too so their included.  We could start a CML Group for emails so we never leave anyone out.  I had Club CML and then Club Blood (40 members) a few years ago.   We made it a social club rather than a support group and went to dinner, beach parties, barbeques etc.  Fun!  I was hurt in an accident (6/08) and let it go and focused on recovery.  I'm better now.

Judy,

I see Dr Wadleigh at DF.  They all work as a team and meet regularly to discuss anyone who's "intersting" for any reason.  They have social workers that you can see if requested.  I spoke with John Harraras (spelling?) initially.  He was nice.  There are support groups there and at the LLS Natick location 1X a month.  DAngelo is one of their tops docs who I think worked with Druker but as I said, they all work together and all experts.

For the sake of convenience when we schedule a meeting, we should list our cities/towns.  Maybe even share personal emails/#s then.  ?

Lynda (me): Waltham..I live right off 95 exit 26 if any of you are in the area, your welcome to come by.  Note: I have 2 little noisy dogs.  Friendly though.

Mark: Taunton

Judy: Boston area?

Skittles: ?

My friend, Kathy: Cape ) ..........emailed to ask if interested today.  Expecting a "yes".

My friend, Lisa (Taunton): Haven't contacted yet but works and has a young son.  May be hard for her to meet.  I'll check.

Sandra: Lincoln...a woman I met at my gym

2 new guys met recently who are in FL: 1) Wakefield in summer

                                                                    2) I forget but can look him up later

There are a couple of others that I've not been in touch with.  If we meet I'll hunt down everyone I ever met.  1) mid state, I remember.  If all showed, we'd be a group of 10/11 or so.  Maybe we should start another thread entitled "CMLr's in the Boston area forming a Group"????

Very happy to meet you guys.   Happy Thanksgiving!

CMLynda

[MACELPatient]

I'm Bob by the way, not Mark.  I was responding to Mark's post.

I believe my appointment is on Dec 9.

I haven't felt the need to do any outreach.

I'm doing just fine doing my own research and being on the forum here.

Everyone have a nice Thanksgiving!

[Ly1je2ma3]

Thank you.  You too.  You know where to find us.

[markmendonca]

Hi this mark from boston we have ant talked in a long time just wanted to no if u r doing great i hope u r ... what r u taking agine?