what if you don't do chemo?

[pete305]

by earlier posts my husband discloses his solitary liver met, his recent RFA, and the oncologist recommendation for 6 months of chemo with something other than oxaliplatin, most likely irinotecan. this time it's me writing, the wife. husband has decided that he does not want to do chemo. he actually has an appt with his oncologist on monday to discuss his prognosis. i tried to tell him to start and he could stop any time it got overwhelming. so now i'm wondering if anyone else been down this road. is this a normal apprehension? can he change his mind and start later? where do i go from here?

[Maggie Nell]

Is your husband still scheduled for surgery on November 16th and going ahead with that?

Original cancer surgery was 2 years ago and just in September a liver met was found after routine CEA and followup PET. Met with the liver surgeon on October 10 after the MRI confirmed the size and location of the single lesion. Options of resection vs ablation were discussed and surgeon recommended ablation due to it being a single lesion with a 3.9 x 3.8 size. Surgeon said the ablation procedure would be done "next week or week after. as soon as it can be scheduled" sent hubby to get the EKG to get it out of the way and speed things up. Well, the surgery finally got scheduled: NOVEMBER 16th. Is it usual for surgery to be almost 6 weeks after all testing has been done and over 2 months after initial met discovery? It there anything we should do? Very uncomfortable waiting this long - especially considering the size of the lesion.

UPDATE: went in to the oncologist today (10/19) and while he was not there his office informed us that the oncologist agreed to surgery first, chemo second when he communicated with the surgeon (on 10/11) believing that surgery was going to happen THE NEXT DAY. while we were told the oncologist has tried to contact the surgeon, we did not know if he succeeded or not. we were advised to contact the surgeon's office again. we did. we were told again that the surgeon was in surgery and the delay was due to operating room scheduling. this is totally unacceptable. we have dealt with cancer treatment at loma linda in california, at vanderbilt in tennessee, at small hospitals in between, and have never been pushed off the way we are here.

[NHMike]

You make this decision at every stage of treatment. Anyone reading these boards knows that pre-surgical chemo and radiation can be painful and cause serious problems and we do it anyway. Then there's surgey - I certainly asked myself - do you really need to do this surgery after all, I feel fine right now. And I face the same thing soon - post-surgical chemo and I've read about Oxy and I'm pretty sure that my surgeon and oncologist are going to recommend it. And I'll do what they recommend. They've been right so far.

[pete305]

Maggie Nell - after the oncologist got involved the surgeon called on a monday (10/23) and set the surgery for wednesday (10/25). pathology confirmed the CC metastasized to the liver. RFA via laparoscopic procedure.

i know my question is a sensitive one. i know every step of the way is a new decision, but what happens when someone says no? how do you support them? how do you know if it's a real decision or just momentarily frozen with fear or tired of going back over and over and over again to the doctors? when is it too late to reconsider? we've been down that road before. he has been getting ongoing treatment for prostate cancer since 2008 and the first chemo series started almost 2 years ago. i guess i was just reaching out to see if someone else has been there.

[pete305]

You make this decision at every stage of treatment. .......
. They've been right so far.

NHMike, wishing you the best and brightest road to recovery.

[Maggie Nell]

Maggie Nell - after the oncologist got involved the surgeon called on a monday (10/23) and set the surgery for wednesday (10/25). pathology confirmed the CC metastasized to the liver. RFA via laparoscopic procedure.

i know my question is a sensitive one. i know every step of the way is a new decision, but what happens when someone says no? how do you support them? how do you know if it's a real decision or just momentarily frozen with fear or tired of going back over and over and over again to the doctors? when is it too late to reconsider? we've been down that road before. he has been getting ongoing treatment for prostate cancer since 2008 and the first chemo series started almost 2 years ago. i guess i was just reaching out to see if someone else has been there.

It is a curly conundrum, that's for sure, for you as the spousal caregiver. I can only speak from my experience as a daughter-caregiver to a mother who had
declined life-extending cardiac surgery and it rather felt like she had rolled the dice to play craps with my life. I didn't get to have a say in her decision, but was
expected to smile, put on a brave face and abide by a decision that flew in the face of common-sense, but she'd been through the wringer and it was her body,
her life, her right.

Who supports you when you want to choke them and ask "Why don't you want to stay with me as long as you can? Don't I matter to you?" ....yet there
is also braided into this, is their perception of how the traipsing back-and-forth to doctors is impacting on you and if you're looking a bit ragged around
the edges and the loved one doesn't want to drag you down with them. Who cares most...

I could say that it's too late to reconsider when you're pushing up daisies.

You've been down this road before, it's not looking so appealing anymore. I trust that a new path appears for you and that your husband's vacillation on this
matter is allowing that new path time to show up.

[zephyr]

As someone who has been on both sides of this issue, first as a caregiver and now as a patient, it's the patient's choice. It's not a question of whether you want to live: it's about quality of life, it's about how much is enough, it's about dignity, it's about facing your demons and coming out on the other side of being ok with what happens, it's caring enough about loved ones to fight but also loving them enough to let go so they can move on with their lives. Just my experience.

Now, having said all that, if I were to make the decision to quit chemo, I would probably turn to a naturopath who specializes in oncology and/or give the Rick Simpson oil (RSO) therapy a try. I'm still on chemo but also seeing a naturopath to help with side effects, and the change in my quality of life has been nothing short of amazing. I was very close to the edge of that ENOUGH! cliff when the caregiver of another CRC patient gave me the name of the doctor. Unfortunately it's pricey and probably not covered by insurance but if it's the last shot, it might be worth trying for a month and seeing if makes a difference. I met a breast cancer patient there last week who elected not to do chemo but was having good results with whatever she was doing - her circulating tumor cell levels had dropped significantly and she sure seemed to have a lot of energy. As for RSO therapy, if you don't live in a medical marijuana state, RSO is going to be a challenge.

I don't mean any of this as advice or a recommendation ... just passing along my own experiences. I sincerely hope it doesn't offend anyone.

[rp1954]

There are two directions you could try. First, formulas that extend daily oral chemo at lower doses with other off label ingredients as Maia and I have discussed. Second, immune boosting formulas that may be helpful, perhaps exemplified by WhiteSwan's mom, but with more ingredients for mCRC.

We have used additional selected supplements in these approaches to reduce both chemo side effects and cancer debilities as well as improve chemo performance. We see immunochemo as the nicest treatment approach with many startling successes. However, a patient typically has to direct the treatment and consult with several sources, or DIY parts of it.