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Makes me wonder....

allmost60's picture
allmost60
Posts: 3153
Joined: Jul 2010

Hi guys,
At my last R infusion 3 weeks ago I asked my doctor a few questions regarding the long term survival rate with Follicular NHL. I could tell he felt a little uncomfortable by my question, so I showed him some information I had printed out and just asked him to give me his honest opinion on what the info reported. After reading the material, he said it was pretty accurate, but new strides are being made everyday and I should focus more on the "hope" that better treatments will be available as the years progress. Well....I'm not depressed by what he said, but it sure makes me wonder about the 8-10 year prognosis. Didn't share this with you to scare or bring fear, just wondered if any of you had this same discussion with your doctors and if so, did you you get a different answer from your doctor than mine gave me? I fall in the "High risk" catagory for the 8-10 year prognosis. Anyways....
Here is the article I printed out and had my doctor read:
--------------------------------------------------------
Follicular Non Hodgkins Lymphoma

Prognostic factors determine both choice of treatment and ultimate outcomes:

Follicular lymphoma is a slow growing disease, and often doctors do not advise immediate treatment, preferring to wait till an individual becomes symptomatic. The course of the disease and the treatment given depends on a handful of factors. Some are related to the disease and some to the person affected. They make up the 'Follicular Lymphoma International Prognostic Index' or FLIPI. Here is a discussion on these factors and how they affect the ultimate results.

The disease stage:
This is a very important prognostic factor. Early stage disease - Stages I and II may be treated in a completely different manner compared with advanced stage disease - stages III and IV. The outcomes are also very different. Early stage disease is usually cured, while advanced stage disease being rarely curable.

The number of lymph node sites involved:
Lymphoma most commonly presents with lymph node swellings. If lymph node masses are seen in more than four different areas, the results of treatment are worse.

Blood test results:
You may have to undergo a number of blood tests once you are diagnosed with lymphoma. Two blood test reports make a difference in prognosis. A high value of lactate dehydrogenase (LDH) and a low value of Hemoglobin (less tha 12 gm/dl) predict worse outcomes.

Age:
The age of the individual is a very important prognostic factor. Persons less than 60 years of age tend to have better outcomes than older individuals.

How does it all add up?:
Based on the five factors mentioned above, follicular lymphoma is divided into 3 risk groups:

•Low Risk (0 or 1 factor) - chances of surviving 10 years is 70%.
•Intermediate Risk (2 factors) - chances of surviving 10 years is 50%.
•High Risk (3 to 5 factors) - a 35% chance of surviving 10 years.

jimwins's picture
jimwins
Posts: 1980
Joined: Aug 2011

Sweet Sue,

A disappointing aspect of our culture/society is how we deal with death
and old age. We tend to keep it swept under the rug and somewhat hidden.
It's almost taboo to discuss and certainly uncomfortable because none
of us wants to deal with our mortality. It is certainly one of the reasons our
"friends" and relatives kind of become distant or weird when they hear about
our cancer, etc. It's also the reason doctors are often uncomfortable discussing
this as well :).

I'll share something with you my oncologist said to me and I'm paraphrasing
from limited memory here. In our initial meeting, I approached her with
statistics and prognostic indicators and the like.

She took me seriously and thought for a moment and basically responded,
"Who's to say you're not going to be in that percentage (even if it's small)
who survives or is cured?".
She went on to discuss how attitude was important during treatment, etc.

During my treatment I had more than one doctor tell me that you can have two people in treatment who are essentially the same on paper (medically) and the one with the better attitude generally fairs better. That unfortunately is not factored into the prognostic indicators as well as other less "quantifiable" things like faith and belief :).

Remember the Native American story of the two wolves in our heart at war (one good and one bad). Which one wins? The one we feed ;).

Sue, you're one in a million so you're already part of a very small percentage
of goodness :). There's no reason why you can't be a member of another small
percentage - right?

Now, feed that good wolf - what was her name - Lizzy? :)

Sending super hugs to my big sister Sue,

Jim

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Sue,
Those same thoughts have gone thru my mind several times. The more I think the more it makes me realize some things. What we have is very slow growing. We and everyone else may have had this for years. If you would not have found that lump you would probably still not know. If I hadn't gone to the urologist I probably still would not know. A lot of this was found by accident. The ones that had to go to the Dr. because of symtoms may be a little different. They may have had it for a long long time. Symtoms started to show. It is rare that someone gets diagnosed real early because theres no need to go to the DR. and they never check for it anyway. Hell,its like pulling teeth to get them to check when you do have symtoms. It makes me wonder where they start with the stats. They do not know how long a person has had this to start. I am going stop here and continue later. May not be able to post. John

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

From what I have read they base their stats on when diagnosed. What if for some reason you would have been diagnosed 20 years ago when you went to the dr. for another reason. Who knows for sure we may have had it that long. Remember they never check for it anyway.I think you know what I mean. Then again it is all stats and we are people and may or may not fall into that catagory. I think everyone is an individual . I have also read that no matter what a person dies of in the end. Heart attack,diabetes.kidney problems,etc. If they were diagnosed with Lymphoma then they become a lymphoma statistic. This I believe is what they are going by.Then maybe I am just trying to think positive and make myself believe this.This is just my opinion and I am sure everyone else has theirs as well. John

jimwins's picture
jimwins
Posts: 1980
Joined: Aug 2011

What? John has an opinion? LOL
Just picking on you.

Can you tell I'm putting off work around the house?

Hugs,

Jim

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Paybacks are a B*T*H...LOL John

allmost60's picture
allmost60
Posts: 3153
Joined: Jul 2010

Thanks guys...I'm fine and not depressed or anything like that, it's just the way my doctor acted and how "matter of fact" his opinion was. Just left me a little un-nerved...ya know? You better believe my sweet Lizzy keeps most of my fears at bay, but every so often when she's laying quietly asleep in my arms, that awful feeling of holding her EVER coming to an end just makes me weak in the knees. The newest article on FNHL I read for June 2012 pretty much said what we've read in all of the old out-dated articles. Just wish the scientists would hurry up and flood us with some really fantastic cures! All's good guys...this old bird isn't anywhere close to giving up! Love ya's....Sue
(FNHL-2-3A-6/10)

jimwins's picture
jimwins
Posts: 1980
Joined: Aug 2011

I saw your "Tweety Bird" post on the expressions :).
It was very funny. I copied it and sent it to a bunch
of my friends - LOL.

Hugs

allmost60's picture
allmost60
Posts: 3153
Joined: Jul 2010

I was a little hesitant to post "Tweety", but, funny is funny, no matter how you slice it! Glad you liked and shared!...Sue

miss maggie
Posts: 929
Joined: Mar 2010

Dearest Sue,

Reading your post really upset me. It's so unlike you. I so wish you never had this
conversation with your doctor. At the same time, I am glad you shared your darkest
moments. It is good to let us know how you feel. Otherwise, how would we be there for you.

I have to admit, I have been a bit sad lately. I have been reading all the new posts.
Some of the news has not been good. So far that is. Hopefully things will change for the
better for those strugglng right now. Sometimes I think ignorance is bliss.

You are not an old bird. Old birds don't do what you do. Love you so. Love Maggie

allmost60's picture
allmost60
Posts: 3153
Joined: Jul 2010

Good morning Maggie,
Nothing is happening and I'm doing fine. At my last Rituxan infusion I decided to ask my Onc a few more questions than usual and ended up leaving his office less confident as when I went in. That will teach me to be so darn inquisitive..ha! Actually I had read a new study regarding first line treatment for Follicular NHL and wanted to get some feed back from my Onc. The study showed a longer remission period when first line treatment consisted of a different protocol than what I had 2 years ago. I was curious to find out why CVP-R treatment was chosen first for me instead of trying something else. I think he felt I was questioning his judgement, so his answer was just a little too insensitive...kind of cut and dried and curt. Then...alot of folks here in our group were posting about relapsing just a couple years(or months) after their treatments were finsished, which didn't help matters any. I'm fine Maggie, and have since decided to remember that only God is in control of my destiny...not me or my Onc, or the chemo they used! I'm getting close to finishing my rituxan (4 more to go), so I think I allowed the fear of relapsing creep into my thinking which I usually don't do. Anyways...all is good sweet Maggie, I'm still babysitting Lizzy(have her today), and I'm feeling fine, so don't worry about me. Thank you for caring...you are a sweetie indeed. Hope your doing good. Love you...Sue
(FNHL-2-3A-6/10)

miss maggie
Posts: 929
Joined: Mar 2010

Dearest Sue,

I am sure you and I share the same highs and lows.

I can understand you questioning your oncologist. Did he think you were questioning
his decision to use CVP-R instead of the protocol with a longer remission? I can't tell
you. Was he having a bad day? Either way, I'm sorry he ruined your day. Since you haven't
reached remission, I understand your concern. Then reading all the relapses, doesn't help.

The good news, 4 more treatments of Rituxan. My opinion, you seem to be doing so well.
Something positive has to be happening from the Rituxan treatment. You have to
remember, your dx is treatable. I am doing well, thank you for asking. Think about
your vacation in Agust. Love you too.

God Bless and blessings love maggie

anliperez915's picture
anliperez915
Posts: 742
Joined: Sep 2011

Hi Sweet Sue,
I haven't had that discussion with my Onc and truly I don't think I want to have it. Just know that you're not alone when thinking of "survival rate". I also go there but I stop myself and I say to myself (which I do often) lol, the Doctors are not God! Only God will say when and where! Stay strong sweet Sue (((HUGS)))

Sincerely,
Liz

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