To do what the docs suggest, or not?

[skypup]

SMR, thank you so much for your story. What kindness to tell me of your husband's story; it's comforting to know his thinking was much the same as mine. What makes me smile most is feeling how you so understood him on his journey. Love is the best.
Hugs!

[Cherie]

xox Luv U!! Just sent you a letter.

I'm not going to tell you what to do but rather what I am doing. My oncologist refuses to give me more chemo. The hair and the skin, and travel, time, pain, and money are not little things these are huge and yes you might get more time but also a lot more suffering. Its not about time but quality for me and that's why I'm doing the vitamin c. I have energy through the week and by all accounts from the outside world I look cancer free. Thats how I chose to live my time I have left. I'm not giving up I just want to live it to as "normal" as I can. I am not going to win this battle but I can still have some fun in my life.

xox

[Ceebo]

Cherie, do you mind if I ask how much Vitamin C you are taking? So glad it's working for you and you are experiencing a good QOL. --Cindie

[Delinda2]

Skypuppy, I won't offer an opinion, other than to say yours is the only one that counts. I'm writing to thank you and the many others who have so generously shared the decision making process with us. I fear it's something too many of us will have to face as time passes. It's such an intimate thing and I appreciate being allowed to hear your thoughts. It's already helped me to clarify my own thoughts and feelings. I've learned I'm definitely a "quality over quantity" type of gal. I hope you are comfortable and that your heart is filled with light. Hugs to you dear one. XXOXO, Delinda

[pukalania]

Hi Skypup
We are in similar situation... Decided to try TAS102 even tho it's not listed as a trial in wa onc is able to get it as a compassionate use.. So you may be able to get it where you are if interested ... It's similar to 5fu but in oral form...good luck and hugs

[jjlist]

I can't make that decision for you. I can only support it. And I would support without question the one you choose. Lets face it, there is no cure for cancer yet. We get poked, cut, infused and radiated in the hopes we respond positively. It's a guess as to which statistic we ultimately will belong to. Drs try to save lives. That's their oath. Personal Quality of life is the factor I will rely on. Drs don't walk in your shoes. My current "signature" doesn't show huge setbacks I have gone through in the last 3 months. I haven't done what the drs have suggested for them. If when I get worse, I am leaning towards no treatment. My setbacks are past treatment related. My quality of life since my diagnosis has been manageable but far from what it was pre diagnosis. Now it's worse. We all have an expiration date. And it's not resettable. Modern cancer treatments have prolonged life but at what cost to the patient?

[Maia]

My beloved Theresa, I know that whatever you decide to do, it will be exactly the best thing for you. You're one of the persons who, to my eyes, have made the most intelligent, good-results-oriented *and* quality-of-life-oriented decisions that I have ever seen. Plus, you're a compassionate, honest and humble person... what else you could possible need, to know that everything will be fine for you, wherever the path leads you.
Saying that... I don't think your gut lacks intelligence. Many things can be done with lower doses/alternative schedules you can get from your standard-of-care providers; with over-the-counter stuff, with out-of-the-standard-of-care... *and* good quality of life. Cherie had some good ideas going on there.
Would you let us know about if you had that scan done..?
I'm so sad I've let you down and I have not been here for you. Truly sad. I'm so sorry, skypuppy.

30-ish old skin, uh?? beeeetch!

[skypup]

Thanks, Maia, for just being you! And resurrecting this thread let me read all the caring and wise responses again, which was good.

Pukalania, how great that you got TAS-102 on a compassionate use status! Please let us know how it goes. I'll PM.

UPDATE: After a careful reading of my latest CT report, it seems one of the most disturbing pieces of news for me recently, which led me to discontinue iri+erbi, was a false positive (docs didn't bother to mention this--when I asked, I got a squishy answer as if I were angling to cause trouble about the false positive. Not.) Which means that iri+erbi was seemingly working all along. Jeez. So I'm back on it and not worrying about the kidney or bone mets until I get confirmation from my next set of scans. I've greatly reduced iri dosage from 180 per meter squared to 100, and did a 20% reduction on standard Erbitux dose. I'll probably go lower still. QOL: I only have 2 bad days with this regimen. Pain has gone to near 0 for the first time in over two years, how weird is that? Skin problems are not happening yet.

Thanks for the honest feedback and kind support, everyone!

[Maia]

I'm tearing up out of relief.

Low doses, continually, like the humble, formless water that finally overcomes the hardest stone... and cancer is not even the hardest of the stones.
You go, flower girl.
((hugging you in my heart))

[bitchslapped]

UPDATE: After a careful reading of my latest CT report, it seems one of the most disturbing pieces of news for me recently, which led me to discontinue iri+erbi, was a false positive (docs didn't bother to mention this--when I asked, I got a squishy answer as if I were angling to cause trouble about the false positive. Not.) Which means that iri+erbi was seemingly working all along. Jeez.

Well, my God, how dare you question how THAT happened. This gives you free reign to question everything moving forward, don't ya know. I'm sure the relief overshadowed the desire to jump out of the chair & bitchslap someone.

Best Wishes
BS

[justin case]

UPDATE: After a careful reading of my latest CT report, it seems one of the most disturbing pieces of news for me recently, which led me to discontinue iri+erbi, was a false positive (docs didn't bother to mention this--when I asked, I got a squishy answer as if I were angling to cause trouble about the false positive. Not.) Which means that iri+erbi was seemingly working all along. Jeez.

Well, my God, how dare you question how THAT happened. This gives you free reign to question everything moving forward, don't ya know. I'm sure the relief overshadowed the desire to jump out of the chair & bitchslap someone.

Best Wishes
BS

I agree with Lois, although she is not close enough to us, to express (don cha know), quite as well as we do I don't often respond to these threads, but I am concerned for your well being, and I just wanted you to know.
Michael

[skypup]

UPDATE: After a careful reading of my latest CT report, it seems one of the most disturbing pieces of news for me recently, which led me to discontinue iri+erbi, was a false positive (docs didn't bother to mention this--when I asked, I got a squishy answer as if I were angling to cause trouble about the false positive. Not.) Which means that iri+erbi was seemingly working all along. Jeez.

Well, my God, how dare you question how THAT happened. This gives you free reign to question everything moving forward, don't ya know. I'm sure the relief overshadowed the desire to jump out of the chair & bitchslap someone.

Best Wishes
BS

I agree with Lois, although she is not close enough to us, to express (don cha know), quite as well as we do I don't often respond to these threads, but I am concerned for your well being, and I just wanted you to know.
Michael

Aw, thank you!!!

[ANDRETEXAS]

Skypup...glad things are better. I guess it's another example of where worry gets you nowhere....especially over something that might not exist yet (thanks to false positives) geez.....

[Voxx66]

This sounds like very good news - and I think we can really use some around here. Very happy for you.

[Maia]

Dear Skypuppy, I just wanted to add: you started this post on April 28th, and were wondering about Erbitux; maybe you're not aware that on April 30th, the FDA approved ramucirumab for mCRC.

Ramucirumab (Cyramza)is a human VEGFR2 antagonist (let say, a cousin of Erbitux; but the rash doesn't seems to be a common side effect).
It has been approved in combination with Folfiri for the second-line treatment of patients with metastatic colorectal cancer. It has a relatively known profile, since it has been approved, previously, for gastric and non–small-cell lung.
So, *if* you're up to it, when/if you need it (not now! thank you, false positive), maybe your onc should offer you this, a difference from three days before. : )

I have not seen this posted and I'm thinking of Voxx also... I may post later, in a separate thread.

So, bottom line: everything changes, you never know!