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pattyanny's picture
pattyanny
Posts: 523
Joined: Jul 2009

Hi all - especially you veterans of CSN. I have my PET scan scheduled for 4/19. I received a call from Mt Sinai research department, and they want me to participate in a clinical study. After my PET, they want to do an MRI immediately after to develop a new machine that would combine the PET and the camera of the MRI. This sounded promising for future cancer patients, and would give a better picture of what is going on in the body, although it will not help me much now. They said that there is no added risk for me.
So friends, shall I be the test subject? Thanks, Patty

SASH's picture
SASH
Posts: 279
Joined: Apr 2006

I would say sure, why not unless you are claustrophobic or there is a cost to you or your insurance company. Normally trials aren't covered by insurance so you want to make sure that you aren't out of pocket for their research.

ratface's picture
ratface
Posts: 1248
Joined: Aug 2009

I second the motion by SASH, hard to get more veteran than him.

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

I would do it too. Think it will make you feel good.

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

I agree, if it's at no cost to you other than the extra time....

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Valuable additional information can be provided by the MRI. My insurance company actually required me to have the MRI before they would authorize the PET-CT. Not sure why, except Anthem Blue Cross is known to be difficult. My Stanford Tumor Board doctors said they could see important information on both the MRT and PET-CT. So - I second the group opinion that it couldn't hurt. I add the opinion that it might be of help.

Deb L.

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

How could you not want to help others through this crappy damned disease? Why not use your experience to maybe make life easier for the next person down the road?
When I was about to have my modified radical neck dissection at Johns Hopkins, I was asked if I would donate my lymph nodes to science, for a clinical study on HPV's role in H&N cancer.
Of course I said yes. Once those nodes were removed from my neck, it's not like I had any further use for them.
Go for it, gal, and thanks for helping.

--Jim in Delaware

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

How could you not want to help others through this crappy damned disease? Why not use your experience to maybe make life easier for the next person down the road?
When I was about to have my modified radical neck dissection at Johns Hopkins, I was asked if I would donate my lymph nodes to science, for a clinical study on HPV's role in H&N cancer.
Of course I said yes. Once those nodes were removed from my neck, it's not like I had any further use for them.
Go for it, gal, and thanks for helping.

--Jim in Delaware

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Sounds like the kinda scanning I wish I would be subject to on April 8th, instead of just the PS/CS combo. Will make for a longer day; however, if the results are more reliable, it does seem like the route to take.

The bad stuff is the isotopes, which interact with the sugar water. Got no clue on how the MRI magnetic thing might interact with said, if at all. This is my advice disclaimer, by the way. Of note- I still have not had a MRI for C-detection. Sound reasonable? All opinions are welcome.

Go for it, girl. You will be where I wish I will go on April 8th.

kcass

backachedp
Posts: 124
Joined: Oct 2009

How many types of Blue Cross are there?? I have never heard of yours and we have Blue Cross of Texas...I would do the Scan if there is no cost..like others said it could hepl others in the future. I would only do it if you are comfortable with it though....

Hondo's picture
Hondo
Posts: 5812
Joined: Apr 2009

I too dont see where it will hurt anything unless like Kent said having to take the isotopes. At MD Anderson I would have to take the MRI one day and the PET the next day, it would be nice to have one machine to do it all. I guess the good part is all the people you might be able to help in the future by having a better scan.

God be with you.

Trew
Posts: 892
Joined: Jan 2010

I hang out in another section of these boards- but consider cancer like an adventure and take what comes. Maybe this will help us who have other cancers, too. We are all together in fighting this beast.

I wish you well whatever you do.

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

I agree with the others - as long as there is no out of pocket expense to you - I would do it. I think I would feel it was an honor to be a part of something that would benefit others who are fighting cancer.

Please take care and stay strong.

Glenna

Hondo's picture
Hondo
Posts: 5812
Joined: Apr 2009

What ever choice you make Patty know that there are many here behind you cheering you on.

pattyanny's picture
pattyanny
Posts: 523
Joined: Jul 2009

Thank you all for you input, I have researched the machine, and emailed the hospital with the questions you all brought up to me. I am awaiting their reply, but so far no reaction with isotopes, no cost to insurance. I think it will mostly time consuming, and maybe a bit which I thank God, I have! I read up on this technique, and although as I said, it won't help me, it may help future fighters. Hey! BTW - I gained 8 lbs this month! Whoo hoo! Thank you all for your knowledge, and support! Stay well! Love Patty

Hondo's picture
Hondo
Posts: 5812
Joined: Apr 2009

Way to go girl, I will be praying for you, glad to hear you are starting to gain a few lbs back.

All the best and my God bless

pattyanny's picture
pattyanny
Posts: 523
Joined: Jul 2009

Thank you Hondo! My prayers are with you as well! Fatty Patty :)

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

It's great to hear that you are finally gaining some weight. I've gained back 5 lbs since my treatment ended last Sept. but haven't been able to put more on. Of course the good weather is finally here and I am outside and more active than I am in the cold weather ;-)

I hope everything goes well and you are able to do participate in the clinical study for the new machine they want to develop. It's amazing to think how much you may be helping future cancer patients. You will someday be "rewarded" for you compassion and courage.

My best to you in all that you do.

Stay strong and keep fighting.
Glenna

pattyanny's picture
pattyanny
Posts: 523
Joined: Jul 2009

Awww, come on Glenna, you can do better then 5 lbs! Peanut butter is great on the calories, although I am not a fan, I bought those pre-packaged sandwich crackers. The Carnation VHC by Nestle is 560 calories a can, and I drink three a day! I make it a point to have a late night snack before bed, which I figure sleeping won't burn off any calories.
I expect more poundage in the future Glenna! Lol! Thanks for your post, and good wishes! Very much appreciated! Press forward in health!
You can do this - although I would bet that your "puppy" keeps you active.
BTW - Who takes who for the walks???? Hee hee!
Love & Prayers, Patty

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi Patty, I absolutely LOVE peanut butter but unfortunately it is the one food I still can't eat. I still have to sip water with a lot of foods I eat but even water won't make peanut butter go down. The last time I tried to eat it I scared myself because I couldn't swallow it and thought I was going to suffocate myself, finally after several sips of water it went down. LOL- now my goal in life is to be able to eat an English Muffin with PB ;-)

I'm really not worried too much about my weight because the clothes I wore pre-cancer still fit, a little looser, but they still fit. I think the reason my weight hasn't gone up as much as most people think it should is because I lost so much muscle in my legs and arms and haven't gotten it all back yet. Now that the weather is finally warming and the snow is gone I am able to go for walks which will hopefully help me regain the muscles in my legs. I'm also working in the yard and my flower gardens so that should help my arms.

As for "who takes who for the walks" - my 95 lb "puppy" (I only weigh 103) - he NEVER walks, my husband has to walk him and I walk my husband's black lab (only 90 lbs) as he is a lot mellower than mine. They are the "craziest" dogs you will ever meet and spoiled rotten, their names really fit them - mine is Jughead and my husband's is Meathead. Very fitting I think - LOL

Take care of yourself and keep eating.

Love and prayers to you also,
Glenna

pattyanny's picture
pattyanny
Posts: 523
Joined: Jul 2009

DUH! Yep~ Now I remember being horrified by even the thought of a teaspoon of peanut butter! Ugh! And so sorry - did not mean to sound critical about your weight gain - by any means - 5lbs is great! I find it is difficult to write and express myself the way I want to sometimes. I am happy to hear your clothes fit, that is a great indicator. I had to buy new, but now some old ones are fitting better.
That muscle loss is so upsetting to me. I walk a lot too, the arms and legs look "flabby" - if that is even possible at our weight! I have been raking those darn leaves, (which somehow all ended up in my yard!)and that was good for the arms. I cannot wait to garden - great idea! I enjoy getting immediate satisfaction of the beautiful flowers, and eventually the delicious veggies! Thank for reminding me and giving me something to look forward to! It is still a little cool here yet to plant.
Had to laugh about Jughead & Meathead, because just from the pic, I could picture you flying down the street behind him! Lol! They must be great company!
Take care, and press forward in faith! Patty

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi Patty,

I did not take your previous response as critical at all, actually took it as you teasing me about being so slow at gaining weight ;-) I know what you mean about not always being able to express yourself the way you want. When I type a response I mean it one way but the person reading it takes it another way. That's why I use so many smiley faces in my responses so people will know I'm not being critical.

I know what you mean by the "flabby" arms and legs. When I describe myself now I say I am a skeleton with skin hanging on it. It's a good thing I'm too old for short shorts or any type of shorts for that matter and my sunbathing days are over.

Yes, gardening is good exercise. It is beneficial to your arms and legs. It's still too early here for planting, I live in NH so we definitely can not plant before Memorial Day but I have been raking leaves and clearing fallen branches from my gardens. I've also been digging up some of my Iris to break off the new growth and replant them. I was excited when I did this as I now have over 30 new Iris plants, all purples and yellows. They won't flower this year but next year I will be inundated with Iris, I plan on being here next summer for the show ;-)

Yes, seeing me try to walk my dog is quite a show - I'm only 5 feet and 103 pounds so you can just visualize me with a dog who is almost my size, actually when he stands on his hind legs with his paws on my shoulders he is as tall as I am - LOL They certainly are great company and I would be lost without them.

Just a quick update - I went for my second scan yesterday and will get the results on Wednesday the 14th. I'm nervous, as usual, but I have many great friends and family who are praying for me and I continue to pray daily for everyone on this site.

I may go back to drinking a few Ensure Plus each day to try to put on a couple more pounds as I usually lose a couple pounds in the summer because I am much more active.

Hugs and prayers to you Patty!!

Glenna

pattyanny's picture
pattyanny
Posts: 523
Joined: Jul 2009

Glad we understand each other, and appreciate your blogs. They help so much.
I plan on getting out in the yard to do some raking today, and try to build up some arm mass. I have my PET on 4/19 and awoke in a panic and anxiety mode, although it is a week away! I have been taking care of my Mom, so that has kept my mind off my own health.
But now.... the waiting, and count down is just overwhelming. I will participate in the MRI test scan after my PET, but will have the PET results that afternoon. They wanted to do a volunteer breast test MRI, but I quickly explained, due to the weight loss, that may be difficult since they too disappeared along with my butt! Lol!

I pray you have clean results, and happy news on Wednesday! Press forward in faith, He has not let me down yet! God bless you Glenna! Your friend, Fatty Patty :)

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

As my husband says - my shoulder blades stick out more than my breasts do ;-) Fatty Patty is only in your dreams -hahaha

I'm excited for you and the upcoming PET, it will be so much less anxiety on your part knowing you will get the results the same day. You will do good, I can feel it.

I pray that we will both get good scan results. As you said - He has not let you down yet and I know he won't now. You have been through too much already.

I've been raking and digging in my gardens for several days now, I don't see any change in my arms except they really, really ache ;-( No pain, no gain - Right???

God bless you also Patty and stay in touch.

Your friend,
Glenna

pattyanny's picture
pattyanny
Posts: 523
Joined: Jul 2009

Glad to hear you are getting outside and out those arms! Just don't overdo, you are burning calories too, so replenish with the Ensure.
I,myself, had good intentions, with raking gloves and sunscreen at the ready. I made it to the back porch, and the wind blew me back inside! Lol! It was too chilly for these bones! Maybe tomorrow :)!
Thanks for the good wishes & prayers! I will be praying hard for you for your results on Wednesday. Keep the Faith! Love Patty

pattyanny's picture
pattyanny
Posts: 523
Joined: Jul 2009

Hey Glenna - What about Jughead & Meathead? Can't the help in the garden? They must have some pretty big mitts - good for digging! Lol! I can just picture that one!

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi Patty - unfortunately my dogs are too lazy to dig ;-( They are 8 and 9 years old and their idea of work is to get up from one spot and move to another so they can lay in the sun. What a horrible life - hahaha!!

I know what you mean about the wind blowing you around. It has been sunny and reasonable warm for the past few days but the wind has been quite strong which makes it rather unpleasant trying to work so I use that as an excuse to sit in a lounge chair in an area protected from the wind. Sometimes I sit there and read and other times I just look at the beauty that surrounds me, my spring flowers are blooming, the trees are getting buds and the birds are all flocking back. Nature is truly beautiful and I am blessed to be able to live in the country.

I got incredible news yesterday, the doctors can't find the tumor in my lung anymore. My rad. doc said there is scar tissue in my lung and if the tumor is still there it is so small that it is hiding behind the scar tissue. If my next scan comes back as good he is going to move me to a 6 month schedule. I had been told by the surgeon who did the original biopsy that there were lymph nodes involved so I asked the doc yesterday about them and he said no - there are no nodes involved. I can't believe the incredible feelings I had after leaving his office. Miracles do happen!! I know it was my cancer team and modern medicine that got me to this point but I truly believe that all the prayers and support I have received had a lot to do with my quick recovery. It has only been 11 months since my original diagnosis and I'm doing much better than I ever thought I would.

I am going to start another post to let everyone know about the great results I received and hope it will give others hope and encouragement. Miracles do happen - eleven months ago I was told by the surgeon who did the lung biopsy that I was inoperable and incurable and that he couldn't tell me how long I had to live. That was before they even found out that I had another type of cancer on my larynx. I left his office thinking I would be dead by the end of the year. Now look at me, I will probably outlive the surgeon who gave me the discouraging diagnosis and prognosis!!!

Take care my friend and keep eating. You are in my prayers, Glenna

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

As my husband says - my shoulder blades stick out more than my breasts do ;-) Fatty Patty is only in your dreams -hahaha

I'm excited for you and the upcoming PET, it will be so much less anxiety on your part knowing you will get the results the same day. You will do good, I can feel it.

I pray that we will both get good scan results. As you said - He has not let you down yet and I know he won't now. You have been through too much already.

I've been raking and digging in my gardens for several days now, I don't see any change in my arms except they really, really ache ;-( No pain, no gain - Right???

God bless you also Patty and stay in touch.

Your friend,
Glenna

staceya's picture
staceya
Posts: 702
Joined: Jan 2010

Patty..I'm right with you
I'm 91 pounds and look flabby (I know I shouldn't complain about these sorts of things, given the whole picture of what is going on..BUT) my legs look they are 100 years old!! Rode the bike for a tiny bit today. I do feel so weak..My arm weight routine currently consists of reading a heavy book!! so maybe my arms only look about 98 years old.
The rest of me is 49..
Where are you? I am in Montana and we won't be planting for a while.
Stacey

pattyanny's picture
pattyanny
Posts: 523
Joined: Jul 2009

I know exactly what you mean - heavy book! Lol! I read somewhere to start out doing repetitions with soup cans. Maybe I will start off with tomato paste 6oz!
My legs look like pencils so I will be thankful if I can find some long capri pants. It may be a hot summer with this crazy weather.
I am in NY, so Mothers Day is planting day here.
I know the flabby, wrinkling arms and bod are nothing compared what we have all been thru, but it is nice to share and laugh about these changes with a fellow member.
I am just happy that I may celebrate another birthday this month! 54 years old, body -98,
mind - 26 year old hippy who still wears a dungaree jacket! God bless you!
Love & Prayers, Flabby Patty

staceya's picture
staceya
Posts: 702
Joined: Jan 2010

I should clarify, I am only reading the heavy book, not actually doing any reps!
But holding it should count for some sort of exercise!

Hondo's picture
Hondo
Posts: 5812
Joined: Apr 2009

Glenna / Patty

5 lbs is good, after my last treatment in 2005 till this day I have only gain 14 of my 48lbs lost back, the nurse smiled when she told me I am gaining weight last month, eating too much veggies I guess.

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Oooops!! It's been a long time since I double posted.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

You are incorrigible, Glenna.

Take care,

Joe

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi Joe, isn't you calling me incorrigible sort of like the pot/kettle thing??? LOL

Take care and keep blogging as they always make me smile ;-)

Glenna

SASH's picture
SASH
Posts: 279
Joined: Apr 2006

If you enjoy peanut butter try the whipped peanut butter it spreads really thin. I thought I would never eat peanut butter again, but this version I can do without problems when put on toast or waffles. This helps it melt which makes it not so sticky. Add your favorite jelly to also help with the stickyness. I also add chocolate chips, chocolate syrup or m&ms to give it even a better flavor. :D

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Thanks Sash, I'll have to try the whipped peanut butter, I have to admit I've never heard of it but will look for it when I go shopping. I really miss my peanut butter!!! I sound like a little kid - LOL

Stay strong and keep smiling,
Glenna

SASH's picture
SASH
Posts: 279
Joined: Apr 2006

The whipped peanut butter is a version of Peter Pan. I think they call it Tinkerbell.

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Sounds more like Dumbo to me ;-)

denistd's picture
denistd
Posts: 505
Joined: Apr 2009

I weighed 160 going into treatment, went down to 144 after treatment was done and having a hard time eating. My wife and I decided to get 2,500 calories a day into me. This meant 4 cans a day of the stuff sent to me by Apria (thru peg)Drink 4 ensure pluses a day and whatever else I could get down me orally, peanut butter being one of them. When the peg was removed (4 weeks after treatment was finished)I started eating almost anything, but with a lot of water, ate lots of protein bars, cinnamon raisin bread, meat and fish. I now weigh almost 170 lbs and intend to maintain at that. I finished treatment on June 17th 2009.

pattyanny's picture
pattyanny
Posts: 523
Joined: Jul 2009

Good for you denistd! Sounds like you are doing well! Keep up the good work, and stay strong! Thanks for the post! Patty

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