dj/utvolsfan update (lymphoma...yuck)

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dj/utvolsfan

dj/utvolsfan

Well-known member
Joined
Jul 28, 2005
Messages
412
Location
Hurricane, West Virginia
I know I might run into some resistance as to why I am posting cancer ...aka...'ethel' updates on this website....as opposed to an 'ethel' website, but i don't have the guts to 'cross over' to a different and more intimidating website......all i can say is there is comfort among friends.......

No news on bone marrow biopsy but pet scan showed hot spots..tiny ones and only a couple....but was still bumped up to higher stage...Oncologist this morning told me I had the cancer of choice....although I don't exactly remember putting in an order.......However, I have been really pumpheaded so who is to say????? :rolleyes: A little 'ethel' humor for you. ;)

One question for you....I'm being pushed by oncologist to join a small clinical study which includes using only one drug as opposed to the more traditional chemo along combined with this one particular drug. What I want to know ...who in their right mind would choose the path of least resistance at this time in their life? My prognosis is very, very good and it seems rather risky to gamble it away on a study. Oncologist looks at me like I am a freak of sorts.....since I am poo-pooing the study idea in favor of knock your socks off chemo.

Muga study on heart this afternoon... Testing effectivness of my heart muscle. Yikes! :eek: Port for chemo will be surgically placed in chest next week. Dang, right when my modeling career was bound to take off....... Looks like chemo will be Thursday and Friday........i can do this......i can do this....i can do this.......

Many, many heartfelt thanks to all the people who responded with prayers and thoughts. Dennis, Glenda ...you are so inspiring. The books that were recommended are on my shopping list. I am finding it easy to be peppy and optimistic with the help of my friends. Hugs to all.

Any recommendations on any particular books regarding nutrition?
Thanks so much
Debbi
 
I am sorry to hear this. My wife just had her port removed Tuesday. She had chemo and radiation for a lump in her breastand 5 lynphnodes under her arm which were all surgically removed. She is starting to recover nicely and feels great. The drugs put her down pretty good but I guess thewy work.

GoodNews! Her hair is growing back and coming in dark brown without the gray she had before.
 
Debbi,

You know me and the way I look at these type of things. It sucks and it is scary but your strength is deeper than even you know. As far as where you post what don't give it another thought; people post evrything from new baby pictures to questions about pot:eek:

You know who holds the future so tuck in that bottom lip and step up to the plate. I got your back, we all do.

Prayers and Hugs,

Tom
 
Are they going to give you only the one drug and give you a whopping dose of that one? It might make a difference if the onco explained more about the study and why he thinks it's a good idea. They are starting to tailor drugs more for the patient and their particular set of circumstances, and there are a lot of different types of things being tried.

You will get through this, really. I'm two years out from chemo.
 
Debbi,

That's a tough call. Were it me, I guess I would be inclined to go with the previously tested regimen with a good track record rather than the "study" version. But I would check out why the on-doc thinks the study is such a terrific idea. Maybe it has something promising to back it up?

I know that's wishy washy on my part. Just wanted to let you know that I, like so many here, are thinking of you and wishing you the best.
 
Debbi,

I don't have any real ideas about the two different methods of treatment. I guess what I would probably do is find out all the information I could, pray about it a lot, and then go with my heart feelings no matter what the specialist says?? And you can post about whatever you like - we are your friends here and want to support you in any and all ways possible - *hugs* - Jeanne
 
Debbi, I don't know anything about treatments for cancer. Seek out places to learn. But please, know that you are family here. You're stuck with us. And we want to be here for you for any kind of support you may need.
 
Debbi,
I am sending hugs and good wishes. I know you will get through this with flying colors (just what are flying colors anyway??????).
I am sure it is tough to decide on traditional treatment or become part of a study. I personally am a firm believer in studies and experiments because those things are what has kept us all alive. However, it can be different when it hits so close to home.
I would ask a lot of questions as to why this study might benefit you. As Nancy said, if it is something that targets your specific problem it might work out better.
Take care.
 
Deb:
Until now, you were a planner without a plan....Now that you have direction, you will overcome that fear that comes from not knowing. You should reward yourself for the courage you have shown during this long waiting time. As you said to me when I was having difficulty, "get on with it and get it done..." Watch out ethel, you are about to be evicted....

Nutrition information to follow...

Isle of View,
Blanche
 
((((((((((((Debbi)))))))))))))

((((((((((((Debbi)))))))))))))

There is not much I can offer as far as advice. I just want you to know that you are in my prayers everyday. I admire your courage.
 
geebee said:
Debbi,
I am sending hugs and good wishes. I know you will get through this with flying colors (just what are flying colors anyway??????).
/QUOTE]

Gina,
To answer your question:

Color(s) has numerous meanings. An early use of the word is flag, pennant, or badge.
"Passed with flying colors" comes from sailing ships that, when passing other ships at sea, would fly their colors (flags) if they wanted to be identified.

Alternatively,

A metaphor drawn from parades, which do not merely pass, but rather do so with flags raised, "with flying colors."

Debi,
My mom had exactly the same type of cancer as yours so I know something about the choice you face. I think if Mom had been offered similar treatment options, she would have learned all she could about the trial, and if it looked promising, gone with that.
But the circumstances are different, and only you can make the choice.
My prayers are with you as you make your decision.
Mary
Click to expand...
 
Praline...........as are you in mine!!!!!!!!! ..........So funny, there you are in New Orleans where I once lived...........And as I read your signature quote......Bloom where you are planted....I have a big smile on my face as those are the same exact words my mom told me as I was adjusting to life away from home for the first time...there in New Orleans!!! I took her advice and it didn't take long before I had made the Big Easy my home!

Mary - What I have chosen is chemo along with the drug used in the study..Rituxan. This drug has been found to be incredibly successful regarding length of remission. I am still reading up on the study plan and I still have lots of questions but I believe I have made up my mind to go the chemo/rituxan route and I expect everyone of you to shave your heads in solidarity!!!! :eek: Totally kidding.........I think I will buy a funky little pink wig like was worn in Lost in Translation.......or maybe not!

Isle of View 2 u 2!!!
DJ

Praline said:
There is not much I can offer as far as advice. I just want you to know that you are in my prayers everyday. I admire your courage.
Click to expand...
 
Had lymphoma before in remission

Had lymphoma before in remission

I had lymphoma when I was 19 years of age been in remission for 20+ years.
I went through radation and chemo and then exploratory surgery, But noe they do things so different cant believe all the new stuff they do. I just know if they catch it in the right stage it is cureable. Check out alot of information in it.
Don't make any quick decisions. You will be in my prayers.Crystal
 
Oh Crystal,
You are so encouraging. I am thrilled to hear that you are doing so great.....20 + years later! Hooray! Thank you for sharing!
Continued good health to you!
Debbi
 
You're going to be just fine....

You're going to be just fine....

I had a neighbor who was diagnosed with very late stage lymphoma. While she was having her chemo., her husband started having an affair (he "just couldn't handle her sickness"!) As her chemo destroyed her CA, she started becoming this totally kick -*** sort of woman. She threw her bum of a husband out, got custody of her three kids, went back to school and got a law degree, and started working out like her life depended on it. End of story is, she's fine today and works as a ruthless divorce lawyer for low income women, and says that her CA was the best thing that ever happened to her. I think it's been about 10 years since her Dx. Sometimes these life shattering events actually turn out to be life altering events. As she allowed herself to get angry at everything happening to her, she also got stronger, and we all think she scared that ole' cancer right out of her!

You must still be in an early stage. Why didn't they pick up any of this in all your pre-op work up at Cleveland Clinic? I thought they were better than that. I wish Drs. still treated like the old days when they told you what was going to happen. Now we have to figure out all these options, like WE have the medical degree!!! I thought they usually offer the experimental if the tried and true wasn't working. I would probably try to get it all.

You sound like your attitude is headed in the right direction. Now you just start some ***-kicking, and get that "ethel" moving on out of there!!!

You're in my thoughts!:)
 
Debbi. You have such a wonderful attitude. Don't ever hesitate to bring your questions on any matter to this forum. We welcome them. We'd be mad :mad: if you went elsewhere with them! :)

I love what Blanche said about having a plan, now. And I suppose, too, the phrase from your mother, to bloom where you are planted, could actually refer to this bout with cancer, too. You have learned how to bloom. I know you will succeed with this journey, too.

I have a Nutrition book that I like because it breaks down all the information in usable tables. I don't really know what you had in mind, but this one is great for fact finding about almost every kind of food. Nutrition Almanac, fifth edition. by Lavon J Dunne http://www.amazon.com/gp/product/00...9670/ref=pd_bbs_1/102-7099854-8064969?ie=UTF8

Please know that you are in my thoughts!! Keep up the great work and great thinking.

Marguerite
 
I don't know anything about cancer drugs but you sound very positive about the whole thing and that can only be good!! Please continue posting about how you get on - I'll be looking for updates and keeping you in my thoughts!
Loads of love
Emma
xxx
 
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