Saw my onco Tuesday, was nervous.

camul · February 2016

Pharmaceutical Company approved Opdivo for a year at no cost. But when it was brought up, dr. Said he would go over it if it was approved, but day they called me (BristalMyer), then just b4 5p, Dr's office called to schedule infusion for the next week.

By Tuesday I had read everything g on the trials and pleaebos and did not feel good, so I called Tues at 9a and asked them to put everything on hold

Well Tuesday Feb 9th was my onco is it and Iwas nervous, felt he had done so much to get this and I was not comfortable doing it. First thing he sad when he. A me I the room was he needed to go over some things he wanted me to be aware of the possible side effects, that it was not a cure, purely to help with oain. His concerns were rather than help there is a possibility that my quality of life could be worse. It would be palliative treatment and it did not make sense to do the Opdivo without doing Quadromet the whole body radiation that has its own set of side effects, low white counts, as well as no red could ts that could mean transfusion. Not guaranteed side effects, but not oncommon. There fore it could mean Nuepogen or Nuelesta shots, and /or transfusions, as the radiation kills all the cells and it takes 3-4 weeks to see if it. Omes back, coupled with the possible adverse effects of the Opdivo which most common are blood clots, PE, low ccounts.

With my cancer being aggressive and advanced, hewanted to be sure I knew what I was doing. Told him those were all the razors I decided against it. At this point, we know where it it, I am not cureable, the chances of my body being able to fight the cancer and the side effects may be more than my body can do. He was so great, and said he understands my decision, that again the risks were greater than the benefits.

It felt so good when he said after reading deeper, he was afraid I was gun how to start it without understanding the possibility that in trying we could be shortening g my time, or making the quality less than doing g nothing g but letting go it take its course. He acrually said it was so nice to have someone who was totally prepared and had read up on all of it and was able to make my own 'infomed' decision. He said most just listen and say ok.

I asked where he is on the hospice issue, he said at this point, he would prefer that I continue seeing him for at least the next 2-3 months as he would like to see what my body does. The tumor markers continue to jump, I ran out of Aromas on for the last few weeks, but ordered more now, but he is seeing if that ups the tumor markers he did Tuesday, and compare it with the months while being back on Aromason. So no hospice for a few more months, unless my legs get worse where it is too hard to get i.

Started on steroids to try and strengthen my legs, so far has only made me Hungary and not sleeping g, and they gave me ritlin to try and perk me up from all the pain meds.... haven't needed it with he steroids.

Told him what I neededwas o be down in SO. CAL In the 85 ¤ weather, that would cure most of my ailments.

Thinking of Vick Sam and Victoria and Gagee... living in paradise ♡♡♡

Hugs to all,

Carol

cati0314 · February 2016

Prayers

You are very strong and I wish you good days ahead! Thank you for posting. We care! Sharon

disneyfan2008 · February 2016

hugs

hugs

aisling8 · February 2016

disneyfan2008 said:
hugs
hugs

That sounds like

a very rewarding oncology visit. He listened to you, you listened to him, there is respect, and good decisions were made and affirmed. These seem like such important decisions you're making and to be able to do it together with a medical professional who's paying attention, well, that would just make me feel a whole lot better. I'm hoping the steroids help you.

And yes, the weather is warming up after being cold (what we think of as cold:). The nights are still cool. But the most important thing: the water. The ocean is a dreamy blue-green, nice waves, super crisp horizon, and no crowds (yet). When I go to extension classes, I drive down Del Mar Heights Road to get to Torrey Pines Road and, truly, that view right there is good for whatever ails you -- the bright blue Pacific filling your windshield.

A big huge hug to you, friend.

xoxo

Victoria

jennytwist · February 2016

aisling8 said:
That sounds like
a very rewarding oncology visit. He listened to you, you listened to him, there is respect, and good decisions were made and affirmed. These seem like such important decisions you're making and to be able to do it together with a medical professional who's paying attention, well, that would just make me feel a whole lot better. I'm hoping the steroids help you.

And yes, the weather is warming up after being cold (what we think of as cold:). The nights are still cool. But the most important thing: the water. The ocean is a dreamy blue-green, nice waves, super crisp horizon, and no crowds (yet). When I go to extension classes, I drive down Del Mar Heights Road to get to Torrey Pines Road and, truly, that view right there is good for whatever ails you -- the bright blue Pacific filling your windshield.

A big huge hug to you, friend.

xoxo

Victoria

Keeping you in my prayers....

...and sending gentle hugs to hold you!

Sounds like you are in good hands - such an inspiration you are to all of us!!

much love,

Jenny

camul · February 2016

aisling8 said:
That sounds like
a very rewarding oncology visit. He listened to you, you listened to him, there is respect, and good decisions were made and affirmed. These seem like such important decisions you're making and to be able to do it together with a medical professional who's paying attention, well, that would just make me feel a whole lot better. I'm hoping the steroids help you.

And yes, the weather is warming up after being cold (what we think of as cold:). The nights are still cool. But the most important thing: the water. The ocean is a dreamy blue-green, nice waves, super crisp horizon, and no crowds (yet). When I go to extension classes, I drive down Del Mar Heights Road to get to Torrey Pines Road and, truly, that view right there is good for whatever ails you -- the bright blue Pacific filling your windshield.

A big huge hug to you, friend.

xoxo

Victoria

Thank you Victoria!

That is one of my favorite drives, I love coming around the bend just past Del Mar where the cliff is just peeking heading south. My niece lives in Solana and they keep posting pics from there Patio of the ocean, mostly sunsets... that is when I am big enuf to say I get green!! But the ocean has always been the one place I could just sort thru whatever was bothering me. Here we have the beautiful mountains and rock formations, but the away people drive on the mountain passes scares the check out of me..

It really was one of my better appointments. Not because of where I am physically, I almost went ahead and did treatments that I felt were not for me because I figured if he was putting it out there it must have merit. And it does, but not for me at this point. I followed my gut and as nervous as I was, I really felt strongly that it was not right. I am at peace with where I am and that is the difference.

Now I can do what I need to do to live my life whether months or a year. Now it is all about living.

Hugs,

Carol

lintx · February 2016

camul said:
Thank you Victoria!
That is one of my favorite drives, I love coming around the bend just past Del Mar where the cliff is just peeking heading south. My niece lives in Solana and they keep posting pics from there Patio of the ocean, mostly sunsets... that is when I am big enuf to say I get green!! But the ocean has always been the one place I could just sort thru whatever was bothering me. Here we have the beautiful mountains and rock formations, but the away people drive on the mountain passes scares the check out of me..

It really was one of my better appointments. Not because of where I am physically, I almost went ahead and did treatments that I felt were not for me because I figured if he was putting it out there it must have merit. And it does, but not for me at this point. I followed my gut and as nervous as I was, I really felt strongly that it was not right. I am at peace with where I am and that is the difference.

Now I can do what I need to do to live my life whether months or a year. Now it is all about living.

Hugs,

Carol

Your decision sounds good.

Carol, I can tell how much thought you've put into the decision. It seems like a relief. I know you had a lot to think about and work through. Thanks for keeping us updated. You've got all of us praying for you and thinking about you. No matter where we are in this crazy mess, it's one day at a time for everyone. Hugs to you, Linda

Pixie Dust · February 2016

FIGHT-FIGHT-FIGHT

Carol, you are such a strong person and an inspiration to us all. Let me tell you something. My ONC told me once anybody has any kind of cancer there is never a cure. He told me there is not a cure for cancer. You can be in remission or cancer free but never cured. He said there is always that chance for it to come back so you are not alone. Sure you are alot worse than others but I know you will not give up. Who knows, maybe an other day will bring another treatment that will be for you. God Bless You, HUGS, Pixie Dust

aisling8 · February 2016

Pixie Dust said:
FIGHT-FIGHT-FIGHT
Carol, you are such a strong person and an inspiration to us all. Let me tell you something. My ONC told me once anybody has any kind of cancer there is never a cure. He told me there is not a cure for cancer. You can be in remission or cancer free but never cured. He said there is always that chance for it to come back so you are not alone. Sure you are alot worse than others but I know you will not give up. Who knows, maybe an other day will bring another treatment that will be for you. God Bless You, HUGS, Pixie Dust

Following your gut

I've had situations where I've followed what I know to be right and it turned out to be, well, just right. Sometimes we just know. And it seems like you are absolutely clear on this one what the right path is for you. I can feel the peace in your words.

Now, about that neice of yours sending pictures from her patio of the ocean. I'm envious. I can take pictures of a sunset from my patio, but there won't be an ocean in them:)

xoxo

Victoria

tufi000 · February 2016

Okay

I feel I am walking next to you through this and grateful that, like me, you appear to have great docs. I am here as close as possible.

Wish I could whisk you off to Monterey to the Monterey Inn and langor at Otter Point, my personal recover place. The gulls complain and try to steal the otter's food but they have a sense of humor that restores me an I feel you would get that too.

another day dear ninja

Sherry

Double Whammy · February 2016

tufi000 said:
Okay
I feel I am walking next to you through this and grateful that, like me, you appear to have great docs. I am here as close as possible.

Wish I could whisk you off to Monterey to the Monterey Inn and langor at Otter Point, my personal recover place. The gulls complain and try to steal the otter's food but they have a sense of humor that restores me an I feel you would get that too.

another day dear ninja

Sherry

Ok

You have made your decision, an informed one, and one in which you had choices and trade offs. I am so happy the drug company agreed to provide the drug so you did have that choice and not a situation where you had no choice. Your oncologist must be a really good guy to go out on a limb for you like he did and to be honest and open about the drug and its side effects and how it would likely effect you. Wow.

Suzanne

GreeneyedGirl · February 2016

~♥~

Carol~ there is something about the expansive ocean~that just seems to help ease our thoughts~to temporarily float away, or just roll with the tide. For me it helps to broaden my thinking as I look out at the horizon and just "be".... thoughts come and go like the waves~ it is so soothing. I hope for many opportunities for you to get down in the So. Calif. sunshine. the heat just is good for the bones. You are your best advocate when it comes to your health care, and I am glad that things lined up with your gut feelings and what the Dr. presented at your appt. All I know about the drugs and chemo, I learn from you sisters who have or are walking that path~ it seems overwhelming, the information one must take in, process and then decide upon. I can only imagine the emotion, frustration that comes with it all.

~M

camul · February 2016

GreeneyedGirl said:
~♥~
Carol~ there is something about the expansive ocean~that just seems to help ease our thoughts~to temporarily float away, or just roll with the tide. For me it helps to broaden my thinking as I look out at the horizon and just "be".... thoughts come and go like the waves~ it is so soothing. I hope for many opportunities for you to get down in the So. Calif. sunshine. the heat just is good for the bones. You are your best advocate when it comes to your health care, and I am glad that things lined up with your gut feelings and what the Dr. presented at your appt. All I know about the drugs and chemo, I learn from you sisters who have or are walking that path~ it seems overwhelming, the information one must take in, process and then decide upon. I can only imagine the emotion, frustration that comes with it all.

~M

Thanks all of you.

I think most of you get it. It is never easy, there are no perfect scenarios to this fight. We do the best we can with what we are given and some of the choices are right for some but not all. But I honestly feel like I made the right decision for me and I am at peace with this whole mess called cancer.

Love you all.

Carol

VickiSam · February 2016

camul said:
Thanks all of you.
I think most of you get it. It is never easy, there are no perfect scenarios to this fight. We do the best we can with what we are given and some of the choices are right for some but not all. But I honestly feel like I made the right decision for me and I am at peace with this whole mess called cancer.

Love you all.

Carol

Carol

Informed, researched done and now a plan in place - wonderful to have options

To be at PEACE with your decision and comfortable with your Oncologistis half the battle

Hoping for stronger days for your you.

Vicki Sam

Saw my onco Tuesday, was nervous.

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