Treatment Options

[Guest guest]

Hi Deborah,

I'm sorry you have Achalasia but glad you found this group.

You are wise to consider all options before selecting a

treatment option. First, be sure that you have doctors that

have treated other Achalasia patients and know what they

are doing. This disease is so rare that not all GI's have

the experience they need to effectively treat you.

Please read a lot of the old post here, let us know where you

live. There may be others here who can recommend a

doctor to you if yours is not the best. Don't hesitate to

ask questions. Someone here will be able to answer almost

any thing you want to know.

Maggie,

Alabama

[Guest guest]

Welcome to the group. Sorry to hear that you are having problems. Take some time and look over the site. There is a lot of information in there. I would suggest trying to fine a specialist that deals with our disease. I would also recommend that you write down any questions that you want to ask and take them to all your appointments. That way you will not forget to ask them. Again welcome to our family and I hope you get relief soon.

in Suffolk

[Guest guest]

Welcome Deborah,

Below is my favorite link for researching. Plug in all the key words

and doctors' names and you will be pretty well informed. I posted

about a week ago with a pitch for this website.

I had VATS surgery over a year ago, VATS is through the ribs, not as

many here have had it. I'm doing great... no reflux, no meds, didn't

have a wrap and I eat almost everything.

I live in Long Beach, CA if you happen to be close.

Welcom again.

Sandy in So Cal.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search & DB=pubmed

> Hi, I'm new to this group. I am very glad to see that you

> are out there. I've been having problems for about six

> months and after several tests, now need to figure out

> which way to go next.

[Guest guest]

I have been reading these posts now since last fall, and have been most grateful

for all that I have learned, though often alarmed by same. Hence my current

query:

I was formally diagnosed with CLL in 9/08 (though my doctors noted a high WBC in

3/07, and chose not to pursue it). Am unmutated, 13q deletion only, and

negative for CD38. My last WBC, 2 months go, was 23; my neutrophils, RBC,

hemoglobin all within normal range, platelets declined to 110, went up 155, and

now around 130. I have been in WW and and have deluded myself into believing

that I may have many more years of same.

However, over the past month, I have begun to have symptoms difficult to ignore:

enlarged nodes, extreme fatigue (4-5 hour naps required some days), and last

night, for the first time, night sweats. It may be that I am still a ways from

requiring treatment, but descriptions of the " gold standard " FCR have me so

thoroughly terrified of EVER needing treatment, that I feel the need to educate

myself more thoroughly on my options. I have read on these pages that some

folks receive FR (no " C " --is " C " the most toxic?); someone recently inquired

about R+ABT263--something I've never heard of. I understand that there are

clinical trials for Cal-101 starting up for previous untreated elderly patients

(I am 69 so I guess I qualify. I do have no " comorbidities " , as far as I know;

am very healthy). My question: on what basis do oncologists propose one

treatment or another?: the " flavor " of the CLL one has, based on mutational

status/bone marrow biopsy results/symptoms? Whatever clinical study they're most

interested in at the moment? What sort of options am I likely to be presented

with?

I realize I am probably jumping the gun here, but I am one of those folks who

likes to know as much as possible, as soon as possible, knowledge being the only

thing that gives me the illusion of control. I am already feeling blindsided by

these sudden symptoms.

Any education anyone can provide around treatment options and their

justifications would be greatly appreciated.

Ann Winston

[Guest guest]

Ann - From everything I've heard about Dr. Lamanna you are very

fortunate to have her. FCR is still called the gold standard in many

circles and many get very good remissions from it. Someone on the ACOR

list asked about the length of people's remissions recently and there

were answers of 8 and 9 years and still going strong.

I would ask Dr Lamanna about other options and trials that might fit

your situation if she feels that it's time to treat. It may be that

she doesn't see FCR as the best way to go for you. You might want a

second opinion just for your peace of mind after you have discussed

the issue with her. NYC has some very good people - Dr. Furman, Dr.

Rai, Dr. Asher Kahn (sp?) to name a few. I'm sure others in the group

can add to the list.

Do you have a copy of the LRF booklet on CLL? (lymphoma.org/booklets

- you can order the booklet or read it on line) It has a good section

on treatments, though there are new things coming into the picture

every day.

Do you take a recording device with you to appointments? It's very

helpful, especially when new or dealing with difficult decisions. I

was surprised at how much I missed at some of my appointments, even

though I thought I went in with a good list of questions and took good

notes. It's also easier to really engage in the conversation if you

aren't focused on writing everything down.

I hope you and Dr. Lamanna come up with an option that is comfortable

for both of you!

Pat