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So the news was not good....

Posted: Sat Oct 17, 2020 8:48 am
by Monimom
We went to my husbands appt..to get the results of the CT scan as well as for his 3 week avastin treatment..
Right out of the gate we knew something was amiss, as his dr wanted to speak with us before any bloodwork was done...
She informed us that the scan that was done has shown the cancer is growing, the tumors on both lobes of liver increased 1 cm each, and the area on his lung that months ago she brushed off as likely nothing / focal scarring has now become something as it has increased a bit in size. She told him the next line of treatment she has is for him to go back to infusion of 5fu/ Irinotecan and Panitumumab... she told him to stop taking the Xeloda ,sure wish we she wouldv'e contacted us AS soon as she got the results he couldve canceled his prescription as its doing nothing. I asked her if the dose was different trying to rationalize why its doing nothing suddenly, she said its a maintenance dose, ... ideally she wants hm back on Oxaliplatin, but he has terrible neuropathy so thats not an option, crazy ALL the avastin etc . really did very little.. his tumors are only 1 cm smaller now than when he began 1 yr ago

We left without any bloodwork or treatment , he told her he wants to think about plans moving forward, we discussed with his Onc. about contacting Dr. Kemeny, she agreed to help with whatever our choices are , this practice has an alliance with MSK, I would assume this will help if Dr. Kemeny is open to seeing him. again finacially/insurance wise .... I am stumped as to how we can make this can happen , I believe he is no longer going to try to find work and he's were going to try to get SSDI benefits but we know there is a 2 yr medicare wait...

this is overwhelming and a shock , but honestly it's not ... its surreal , I read posts and signatures on this forum and completely comprehend the monster that were fighting..
I am praying for peace with all decisions that he/we make , as all of you know NONE of this is easy

I have sooo many problems with the way she has handled this with brushing of the lung area and not checking his CEA for 3 moths..etc..., but realize that focusing on that is not going to help this situation whatsoever... so Mon we will be contacting Dr. Kemeny , but in the mean time he's not on any chemo, this is scary considering how it grew in 4 months while ON chemo... once again thank you for any replies they ALL help
Blessings,
Moni ;)

Re: So the news was not good....

Posted: Sat Oct 17, 2020 9:22 am
by boxhill
I'm sorry to hear about the bad news. I hope things go well with Dr. Kemeny.

Re: So the news was not good....

Posted: Sat Oct 17, 2020 10:30 am
by martd
SSDI has a compassionate process for stage 4 cancer patients. It only takes a few months. I would suggest starting immediately, it's also surprisingly easy they were very helpful. After qualifying for SSDI he will then become eligible for medicare.

Re: So the news was not good....

Posted: Sat Oct 17, 2020 10:55 am
by Claudine
Dang, I am really sorry to read this.
But denial has never healed anyone, and when it comes to cancer, knowledge is power. It seems from your post that despite the bad news, your husband isn’t throwing the towel but may be considering other options? Maybe options that are more aggressive than just chemo? From everything I’ve read on this forum, Dr Kemeny seems to be an expert in the field of liver mets so contacting her is a fantastic idea! It’s also great that your husband’s onc is supportive of you getting a second opinion/support from a larger center.
Also, lung mets have been successfully treated with cryoablation or radiation, especially if it’s just an isolated one.
I hope you can start on the path of a new treatment plan soon XXXXX

Re: So the news was not good....

Posted: Sat Oct 17, 2020 12:34 pm
by DarknessEmbraced
I'm sorry it wasn't better news.*hugs* I hope all goes well for you with Dr. Kemeny. :)

Re: So the news was not good....

Posted: Sat Oct 17, 2020 12:43 pm
by FightCRC
If you're husband was on maintenance chemo, then this is what occurs: The patient is on it until there's growth/progression. It's totally expected.

The idea is to stretch things out as long as possible. It's known as the "chemo-for-life" plan. But it also means that once the chemo stops working, you are out of options. And it will eventually stop working. "Chemo-for-life" is treatment with no curative intent.

It's the default approach for vast majority of oncologists/hospitals. It is also, IMO, limited, conservative, and lazy. It's one major reason why 5-year survival stats for mCRC are so dismal. Again, IMO.

To this point, surgical resection remains the gold standard for cure. There are no guarantees. But it's your best shot/hope. Without it, the outcome is all but guaranteed

If your oncologist doesn't chart a path to possible resection from the outset, then they have you on the "chemo-for-life" plan, even if that's not what they're saying out loud. Most oncologists won't consider surgery. But that's not their call. That's a surgeon's call. Has your oncologist had you consult with a surgeon yet? My guess is no.

For all newly diagnosed patients out there, fight to see a surgeon as early as you can. Don't be passive; don't wait until things get desperate to get proactive. If you're diagnosed at Stage IV, things are desperate enough already.

I hope you do see Dr. Kemeny. The whole point of HAI is to get unresectable patients to resection. It doesn't always work, but at least she'll try. Extra-hepatic disease can be an exclusion, but we've seen her accept patients with limited lung mets. That was our experience with her, as well. I wish you and your husband the best of luck.

Re: So the news was not good....

Posted: Sun Oct 18, 2020 1:25 am
by cartech78
I agree with what FightCRC said above. Dr. Kemeny is my doctor as well. When you want to be aggressive she’s the right doctor for that if/when possible. Hopefully you get out to see her soon and she formulates a plan to get you back to shrinking tumors as opposed to only keeping the stable. Good Luck!!!

Re: So the news was not good....

Posted: Wed Oct 21, 2020 9:46 pm
by Monimom
Hi again, I have set up the account with MSK and forwarded records, we are awaiting their contact to set up an appt. hopefully.... I am getting nervous though about the fact that as of now my husband is not doing any type of chemo at the moment, the day we went for the CT scan results he had just started his Xeloda cycle and thought he was getting Avastin, but his Onc. said no, and to stop the Xeloda, she had gotten pre approval for the next line of therapy but we said we wanted to talk about it firsrt and potentially seek other options ... so this is where we are, she is on standby if he wants to start the other chemo... and were afraid of the time he's off it growing even more... any one face gaps in treatment like this ??? the fact that it was already progressing while on chemo, makes this even more frightening.. and please tell me you opinions, at the mentioned appt. his Onc didn't physically examine my husband, nor did they do any bloodwork.. I presume because she knew she wasn't giving him the Avastin infusion , but you'd think she would still care to check on him no???
I appreciate any input,
thankyou
Moni : )