Can I please vent?

AnneCan

Hi everyone,

I am feeling pretty stressed. Last Thursday I had a CT scan, scheduled early because my CEA is continuing to rise. I get the results next Thursday (my cancer centre takes 2 weeks to turn the results around). I have had 2 chemo treatments in a row cancelled; my doctor is pretty sure my chemo (folfiri + avastin) is no longer working. If progression is confirmed I will be switched to erbitux + irinotecan, I think. I am very lucky to be KRAS-wild which makes me eligible for erbitux. And I know I am fortunate to have had a good run with folfiri + avastin. I am stressed; waiting to find out is brutal. I have also been sick this week; some kind of bug I think. So I have been in bed a lot, which makes me feel guilty.

On the bright side, my husband just made me a green tea latte, which is delicious!

Thanks for listening.

tina dasilva

Im so sorry
My dearest Anne I'm so sorry to hear about your chemo and on the wait of you ct scan . I wish you all the luck in the world I will be thinking of you . Hugs Tina

pepebcn

tina dasilva said:

Im so sorry
My dearest Anne I'm so sorry to hear about your chemo and on the wait of you ct scan . I wish you all the luck in the world I will be thinking of you . Hugs Tina

Anne I know exactly what you Feel , as you say
it is so brutal some times! Only thing I can say is that I pray for the best results with your scan!
Cheer up Anne!

Unknown

pepebcn said:

Anne I know exactly what you Feel , as you say
it is so brutal some times! Only thing I can say is that I pray for the best results with your scan!
Cheer up Anne!

This comment has been removed by the Moderator

lisa42

be encouraged
Hi Anne,

I'm sorry that you're going through what you're going through! I know the feeling- been there before. As you said, you are fortunate that you're kras wild-type & that Erbitux will be an option for you. I know that it does help many people- Phil has been on it for a few years now I know & he says it helps him.
I'm surprised that you have to wait 2 weeks to get your scan results- that's lousy! I'm not one for having to wait. Is it possible to go directly to the hospital or center where the films are stored and get it there directly? I used to wait at the beginning until I found out I can actually go to the hospital records room the day after my scan and request my report there myself & they have to give it to me. If I ask for it early at the oncology office, they tell me I have to wait until the doctor reviews it, which takes a few days sometimes. So, forget that! I just circumvent the oncology office and go get it myself- it's a patient's right! My doctor nows I do that now & so expects that I will have done that & now he doesn't mind at all.

Take care, my dear- brighter days are ahead & just because the CEA is rising, doesn't mean it can't turn around. Mine had been going up and up lately and finally just recently, it's gone down again (following a change in my chemo dose and also I've been doing some naturopathic cleanse things- I really believe that's what did it).

Hugs to you- stay strong!
Lisa

Lori-S

Vent away Anne
That's such a long time to wait for important information. I hope that your scans come back better than expected and am so glad that you can add erbitux to your treatment. Hand in there. We're all pulling for you. HUGS

Buzzard

Lori-S said:

Vent away Anne
That's such a long time to wait for important information. I hope that your scans come back better than expected and am so glad that you can add erbitux to your treatment. Hand in there. We're all pulling for you. HUGS

My CEA is given to me within the hour of my blood draw...
at my new oncologists and it took 3 days before at my old one.....Its a difference Im sure on machines and technology available to them.....Its kind of a love/hate thing in that I love to find out quickly but I also hate that in a few minutes after my blood draw Im gonna know the verdict...Oh well, I still like it asap...gives me some peace of mind.....
and Anne....its not bad......until they tell you it is......and they haven't told you anything yet....enjoy your quiet time with hubby......love to you, buzz

geotina

Anne:
You go ahead and vent all you want. Been there, done that with George. George's cancer became very active last December and scans were about as bad as they could get, his CEA spiked to right around 200 but last week, down to 80. Whatever the scans are you can't change what is so go ahead and have another latte. Like George you have been in this fight a while with its ups and downs, so prepare yourself for any news you may receive (I know, easier said than done) and move on to the next treatment.

You, like my George, need a break from this crap and I always hope that will happen.

George had a flu/stomach bug a few weeks ago, combined with starting a new chemo, he felt awful but bounced back in about a week, so don't feel guilty about spending a few extra hours in bed, your body needs it.

Take care - Tina

Crow71

Vent all you ned to
I don't understand why some places take so long to read scans. The longest I've had to wait is one day. When I did folfox the first time I would have a scan on Monday and get the results on Tuesday - which was my treatment day.

For the last two scans I got the results within the hour. My doctor knew that we needed the info in order to know how to proceed with treatment and had lined up the radiologist to look at the scan with him as soon as it was taken. He had made me aware that the scan may be unclear, and that I would have to give the radiologist a day or so to really study it. In both cases it was critical to have the info as both scans showed that the chemo was failng and that further treatments on that particular drug were a waste of good tissue.

This is at Wake Forest. It's a big cancer center. It's always crowded and busy; and yet my onc figures out how to make it work. I don't understand why other places can't provide the same level of service. It really pisses me off Anne, that you have to wait so long.

How do you make a green tea latte?

Roger

tootsie1

That's a long time
I'm sorry you're feeling so stressed, but it's understandable. Hope you'll be able to somehow get those results sooner!

*hugs*
Gail

AnneCan

tina dasilva said:

Im so sorry
My dearest Anne I'm so sorry to hear about your chemo and on the wait of you ct scan . I wish you all the luck in the world I will be thinking of you . Hugs Tina

Thanks Tina!
I really appreciate your wishes for luck + sending good thoughts my way.

AnneCan

lisa42 said:

be encouraged
Hi Anne,

I'm sorry that you're going through what you're going through! I know the feeling- been there before. As you said, you are fortunate that you're kras wild-type & that Erbitux will be an option for you. I know that it does help many people- Phil has been on it for a few years now I know & he says it helps him.
I'm surprised that you have to wait 2 weeks to get your scan results- that's lousy! I'm not one for having to wait. Is it possible to go directly to the hospital or center where the films are stored and get it there directly? I used to wait at the beginning until I found out I can actually go to the hospital records room the day after my scan and request my report there myself & they have to give it to me. If I ask for it early at the oncology office, they tell me I have to wait until the doctor reviews it, which takes a few days sometimes. So, forget that! I just circumvent the oncology office and go get it myself- it's a patient's right! My doctor nows I do that now & so expects that I will have done that & now he doesn't mind at all.

Take care, my dear- brighter days are ahead & just because the CEA is rising, doesn't mean it can't turn around. Mine had been going up and up lately and finally just recently, it's gone down again (following a change in my chemo dose and also I've been doing some naturopathic cleanse things- I really believe that's what did it).

Hugs to you- stay strong!
Lisa

Thank-you Lisa!
Lisa,

I really appreciate your kind thoughts. I don't think I can go around the onc for the results. My cancer centre that I go to for treatment is where the CTs are done. I think there must be an issue with a shortage of radiologists or something. A different radiologist also reads each part (chest + abdomen). It has been this long a weight since the very beginning, but because I know my onc thinks my cancer has progressed (my last scan showed a little tiny bit of progression + my CEA is rising), I am even more stressed than normal. My onc has been warning me for months now that a switch was likely to happen + has been watching my CEA + other things closely but I am still finding this period stressful. I am really happy for your decrease in CEA, that is definitely what I need to hear!

AnneCan

geotina said:

Anne:
You go ahead and vent all you want. Been there, done that with George. George's cancer became very active last December and scans were about as bad as they could get, his CEA spiked to right around 200 but last week, down to 80. Whatever the scans are you can't change what is so go ahead and have another latte. Like George you have been in this fight a while with its ups and downs, so prepare yourself for any news you may receive (I know, easier said than done) and move on to the next treatment.

You, like my George, need a break from this crap and I always hope that will happen.

George had a flu/stomach bug a few weeks ago, combined with starting a new chemo, he felt awful but bounced back in about a week, so don't feel guilty about spending a few extra hours in bed, your body needs it.

Take care - Tina

Thanks Tina!
I am glad to hear George's CEA has come down - that is quite a drop! I appreciate all your good thoughts + hope George is feeling well now.

AnneCan

Crow71 said:

Vent all you ned to
I don't understand why some places take so long to read scans. The longest I've had to wait is one day. When I did folfox the first time I would have a scan on Monday and get the results on Tuesday - which was my treatment day.

For the last two scans I got the results within the hour. My doctor knew that we needed the info in order to know how to proceed with treatment and had lined up the radiologist to look at the scan with him as soon as it was taken. He had made me aware that the scan may be unclear, and that I would have to give the radiologist a day or so to really study it. In both cases it was critical to have the info as both scans showed that the chemo was failng and that further treatments on that particular drug were a waste of good tissue.

This is at Wake Forest. It's a big cancer center. It's always crowded and busy; and yet my onc figures out how to make it work. I don't understand why other places can't provide the same level of service. It really pisses me off Anne, that you have to wait so long.

How do you make a green tea latte?

Roger

Thanks Roger!
Roger, thanks for being so pissed off on my behalf; I really appreciate it! My scan results always take ~ 2 weeks. I go to the 2nd largest comprehensive cancer centre in Canada (in the top 10 or so in North America) + I get great care overall, but this is one thing that drives me crazy!

This is how we make green tea latte:

We use Matcha green tea. It is Japanese, which I have read is better for you than Chinese. Matcha tea is made with the whole leaves + is ground up finely. It is actually bright green in colour. There are several brands of this type of tea; the one I use is called "DO". You can google Matcha (Macha?) green tea + get lots of info. Because you use the whole leaf rather than just infusing the leaves in water, it is supposed to be higher in vitamins + antioxidants. It is quite expensive, might be cheaper in the US, but you only use a small amount + it lasts a long time. You add milk, vanilla + sugar + + warm up with the Matcha. It is very yummy! You can also just use this to make regular green tea. We buy it at smaller grocery stories with a "health section", but it can also be ordered on the internet.

By the way, your avatar looks delicious!

AnneCan

tootsie1 said:

That's a long time
I'm sorry you're feeling so stressed, but it's understandable. Hope you'll be able to somehow get those results sooner!

*hugs*
Gail

Thanks Tootsie!
I really appreciate your good thoughts!

AnneCan

Lori-S said:

Vent away Anne
That's such a long time to wait for important information. I hope that your scans come back better than expected and am so glad that you can add erbitux to your treatment. Hand in there. We're all pulling for you. HUGS

Thanks Lori!
I really appreciate the hugs + good thoughts + I think of you + your son often.

AnneCan

Buzzard said:

My CEA is given to me within the hour of my blood draw...
at my new oncologists and it took 3 days before at my old one.....Its a difference Im sure on machines and technology available to them.....Its kind of a love/hate thing in that I love to find out quickly but I also hate that in a few minutes after my blood draw Im gonna know the verdict...Oh well, I still like it asap...gives me some peace of mind.....
and Anne....its not bad......until they tell you it is......and they haven't told you anything yet....enjoy your quiet time with hubby......love to you, buzz

Hey Buzz!
Thanks, I know you are right (aren't you usually?)

AnneCan

pepebcn said:

Anne I know exactly what you Feel , as you say
it is so brutal some times! Only thing I can say is that I pray for the best results with your scan!
Cheer up Anne!

Thanks Pepe!
I am definitely trying to cheer up. Thanks for your good wishes.

Lovekitties

Dear Anne
No need to feel guilty about taking some much needed rest. Your body lets you know what it needs. And any way, every gal is entitled to some 'pamper me' time.

Hope you can put aside the worries about the scan. After all, you can't change the results and whether you know today or next week, you know you are still in this fight with all your might.

Don't let cancer and all that comes with it get you down emotionally. Too many wonderful things to do no matter how much time is left for each of us.

Hugs,

Marie

luvmum

All my best wishes to you!!!
Hi Anne,
I am so sorry to hear your current situation! I cannot believe you have to wait two weeks before you get your result! On my birthday (a few days ago), my mum had her PET scan and I was so nervous and anxious that I could hardly eat anything! I know it must be so stressed!y friend asked me not to take CEA and scan results too serious as long as there are plans lining up for you! She has been fighting for a long long time... so just keep you positive attitude and thoughts and you will be fine!!!
You are alway my support and inspirations! I will pray for you for a positive outcome!
Best,
Dora

Love2Cats

Hi Anne
I am sorry to hear that. Nothing is worse than having to wait and worry. I am thinking positive thoughts for you.

Sandy