FCR right now?

[Guest guest]

Hi All,

I am 59 yrs old. I was newly diagnosed with CLL/SLL in

January this year. My presentation was very swollen

lymphatic tissues in my throat thus threatening my airway. I

finished radiation treatments in April which were suppose to

make this tissue " melt away " . The radiation did not work

well. Now my oncologist wants to start prednisone, Bactrim,

and FCR this week. The only problem at this time is my

compromised airway. My CBC is good with WBCs within normal

limits. I am unmutated IVGH, zap-70+, CD38neg.,

translocation with 10 and 14 chromosomes. I had already

made an appointment with Dr Coutre at Stanford on the 19th

and I would like to see him first...only 9 days away. I am

not experiencing trouble breathing although I do have throat

irritation and coughing. I also do moderate aerobic

exercise (training for team in training with LLS) with no

problem. Has anyone else had a similiar experience or has

some wisdom on the matter?

Thanks so much,

Peggy

[Guest guest]

Peggy,

I would want to see your CLL specialist first before

starting FCR. Especially since your appointment is only 9

days off, can you move your appointment up? Has your

oncologist given you a specific reason why to start FCR so

quickly?

Tipton

age 67, dxed in 2001, FCR in 2005, relapsed in 2007, rituxan

infusions since 2010. My quality of life is excellent.

Peggy wrote:

/message/15512

[Guest guest]

Hi Peggy -

If it were me I would not start any treatment until I saw a

CLL expert doctor. Dr. Coutre @ Stanford has an excellent

reputation as a CLL specialist. Keep your appointment w/Dr.

Coutre and see what he recommends.

I think it's important to have a CLL specialist doctor as

part of our medical team. For me the best option worked out

to be having a CLL expert doctor (mine is @ UCSD) along with

a local hematologist/oncologist (H/O) plus a good primary

care physician. My CLL specialist is a 3-4 hour drive from

where I live I found ax excellent local H/O willing to work

with my CLL expert doc.

Local H/O doctors do not see many CLL cases since it is

relatively rare so they are probably not up on all the

latest CLL research. So it's best to see an expert doctor

that specializes in CLL.

You might also avail yourself of all the excellent info for

the " newly diagnosed " that has just been posted on this

site in the past few days. The postings are

full of info and links to the some of the best resources for

info. It would take ages for you to find all this on your own.

Warm regards - Patti

Peggy wrote:

/message/15512

[Guest guest]

Peggy - I have to agree with the others - see Dr. Coutre

first. If you are having no problems other than your tonsils

the solution could be as easy as removing the tonsils,

something a few people on another list have had done with

success. I'm sure Dr. Coutre will have seen cases similar to

yours and will have some ideas about how to deal with your

issue. The one nice thing about CLL is that one usually has

time to seek a second opinion - more if one feels the need.

I can't imagine that waiting a week or two before starting

treatment, if you decide to do that, would make a difference.

Pat

[Guest guest]

Hi All,

Thanks to everyone for your encouragement and experience.

Also for validating for me that FCR, perhaps, may not be the

way to go right now due to low WBCs, good RBCs, and

platelets low normal. I haven't heard of surgery for CLL but

maybe that is possible. The area does extend down to my

voice box though, and I believe that is where the problem

lies now. I am going to wait to see Dr Coutre. I hope he has

seen this situation and that he has a more creative

approach. I really feel that my airway is not going to

suddenly close up within 8 days.

Take care all,

Peggy