Bad Scan - Need Info

[crazylife]

DH was being watched for 3 nodules in lungs which has now progressed to 8 - scattered throughout both lungs. He is K-RAS, TP-53 mutation. Can anyone send me info on any trials he may qualify for? She didn't agree with me to try the laser lung surgery because she said they will most likely come back.

He has only been on Folfox so far. Oncologist is saying to not do chemo right now to prolong life? Wait 3 more months. I am seriously confused and need help. I am a mess.

[TXLiz]

You have every right to be a mess. I don't know much but can you get a second opinion at a major cancer treatment center- if you aren't already receiving treatment from one?

I am new, but that's often the advice given here. I would be extremely upset with progression but no offered treatment.

My prayers to you and husband. Lots of smart people will be here soon to give you good advice.

[Maia]

crazylife, so sorry.
First, what lung surgery? Does MSK have laser assisted lung surgery now? And yes, risk of recurrence would be high --even if you can see here at the forum people NED after 3 years from lung laser surgery, many mets; maybe because she tried something experimental to prevent recurrence. Still, 'high risk of recurrence' against 'not durable response from chemotherapy' --if it is that what they are offering-- certainly it is something to consider.

At the MSK, you might want to try and get your husband in an immmunotherapy trial. Specially, this in which Julie is, with early promising results, so far viewtopic.php?f=1&t=57828
Or you can try the clinical trial finder that Tom has put together --link in my signature. Remember you might have a promising clinical trial in New York or any other locations suitable for you, but you won't be offered at the MSK a clinical trial that they don't have there.

[sdino]

Hi Crazy – My wife has practically the same genetic makeup as your husband. Currently we have had some success w/Folfox+Avastin+Oxi. Interesting that your Onc will not address Lung mets. We are experiencing the same thing. No discussion on mets or a basic plan moving forward to address them. Its chemo then wait n wait n see. Very frustrating for us. Been to Roswell and Sloan – same responses. One suggestion is possible contacting NCI/NIH Dr. Rosenberg’s office in Bethesda, MD for Immunology trials. We have been in contact with them, but chemo has not failed us, so…. it’s a wait n see. Wish you and Husband the very best and if you find something, keep us posted, regards, Sdino

[juliej]

Crazylife, I am so sorry. Damn lung mets!

I don't understand why your onc doesn't want him to do chemo. Very confusing. I would think she'd at least add in Avastin or Oxaliplatin, or see if he responds to Irinotecan. Something seems off. My onc (Dr. K) wants you on chemo if you have any growth or new nodules so this is definitely different from what she would do. Is it because she wants him to do a clinical trial? Some trials require patients to be off chemo for at least 3 weeks to clear it out of their system before starting the trial.

MSK has about 10 immunotherapy trials for CRC right now. Here is a link to those:
https://www.mskcc.org/cancer-care/clinical-trials/search?keys=immunotherapy&disease=2172&location=&phase=All&investigator=

And here's a link to the one JulieYW is doing.
https://clinicaltrials.gov/show/NCT02650713

Ask hard questions and demand answers. See if his onc ordered a tumor sequencing test ("MSK-IMPACT" is the name of the test). That will help them look for mutations that can show which particular drug his tumors are likely to respond to.

This is hard news to deal with, but we are with you every step of the way! Hugs to you and your DH!

xo,
Juliej

[KElizabeth]

Why not Folfiri plus Avastin?
I had a great response from the combo for quite some time. I'm Kras and tp53 also. I've been doing it for 20 months and still working full time. It kicked butt on my liver Mets so went from 8 nice size Mets to two.
If your oncologist is not going to treat your DH, then it's time to interview other oncologists.

[crazylife]

juliej,

As you know, she frustrates me with her wait and see approach for everything. She said wait and see 3 months ago with 3 potential mets and here we are with 7! I questioned her and she said quality of life is important and there are limited chemo options so she doesn't want to exhaust them right away.

The surgeon said he wants to remove one that could end up problematic if gets any bigger. So that will happen and then she wants to see if others grow before putting him on chemo.

I am beyond annoyed! She has never ordered a PET scan. I don't know what to do. I feel like she has written him off because he is stage IV.

[musicluvr]

Dealing with lung mets, too. DON'T SETTLE. MARCH IN THERE and demand treatment.

[juliej]

juliej,

As you know, she frustrates me with her wait and see approach for everything. She said wait and see 3 months ago with 3 potential mets and here we are with 7! I questioned her and she said quality of life is important and there are limited chemo options so she doesn't want to exhaust them right away.

The surgeon said he wants to remove one that could end up problematic if gets any bigger. So that will happen and then she wants to see if others grow before putting him on chemo.

I am beyond annoyed! She has never ordered a PET scan. I don't know what to do. I feel like she has written him off because he is stage IV.

Aaargh! The whole "quality of life" speech drives me crazy when it's given in this way!!! Clearly she is slowing down treatment and I suspect it's for the reasons you mentioned - a bias against Stage IVs. That was the biggest problem with my local cancer center. To them it was a forgone conclusion that I needed to "enjoy the short time I had left" and not try for more aggressive treatment. But then I did some research and discovered there were docs who had another view -- their view was that oncologists were giving up on too many Stage IVs who might be, dare we say, "curable"! That's when I had a consultation with Dr. K at MSK. From the beginning she never mentioned quality of life (which some might view as a shortcoming, but which I saw as someone willing to fight for my life with me!). It takes an onc with a more aggressive attitude towards Stage IV treatment than yours has shown so far.

It might come to the point where you have to say we have different goals. We want the most proactive and aggressive treatment because he is still strong. We don't want a "wait and see" approach anymore since it has only resulted in the appearance of more mets. When I went to MSK (against the advice of my local onc) I said simply "if I die without even trying a more aggressive approach, I'll always wonder if it would have made a difference." See if being very upfront about what you want moves her at all.

In the meantime, it sounds like he's headed for surgery? It makes sense to remove the large one that might be problematic later. Ask the surgeon if he can take a biopsy of any nodules in the same area while he's there. That would confirm whether or not they are mets. Just ask the surgeon, don't even bother asking the oncologist. The surgeon can inform her if he says it's doable.

The next thing is to find some type of chemo or immunotherapy that prevents any new nodules from forming and gets him to a stable stage. Then an IR doc (ask for a consultation with Dr. Solomon at MSK for this) might be able to RFA the other nodules. This can be done concurrent with chemo so there's no downtime from treatment. That's a one-two punch: chemotherapy to destroy the cancer cells that aren't visible yet and RFA to destroy the existing nodules.

I understand the shock, sadness and anger you feel about the new nodules. Bad news is never easy to hear. I learned how to compartmentalize those feelings, recover, and move forward. There is no choice. There was a period where my life was a puzzle of shifting pieces; we moved and mixed them around until they fit. Finally everything just seemed to go together. My "expiration date" was 2013. Think about it. Stay strong and stay aggressive about his BEST treatment options.

Hope this helps!
Juliej

[stu]

So sad to hear this. But you know I have had to get my wee Scottish Elbows out a time or two. Sometimes you are backed against a wall and you have to put your husbands desires for treatment forward. They took a look at my mum's age and did not want to touch her but then got a surprise at how fit she was. One surgeon wanted to observe . Observing something go from asymptotic to symptomatic does not seem like quality of life to me. Reducing the tumour load certainly does so I can't see how her approach works. 18 months later my mum is still in good shape with a more aggressive approach .
Hope you get a plan in place,
Kind regards,
Stu

[crazylife]

Thanks all! We don't want to leave MSK but I feel like we don't have a choice. They don't reassign to another oncologist which is unfortunate.

We have an appt with Dr. Hochster at Yale. I've heard he is aggressive with treatment and very well known and respected within the CRC community.

Juliej - I feel the same. I will always wonder the outcome had we not been aggressive as possible. He is doing so well. Runs 5 miles a day and lifts weights. Best shape of his life.

[rp1954]

She didn't agree with me to try the laser lung surgery because she said they will most likely come back.

#1 Always ask the relevant surgeon(s) about their advanced surgical capabilities and experience. The med oncs we discuss here are frequently biased and way behind the curve on advanced surgeries.
#2 The med oncs mostly pay attention to the high priced, highly advertised stuff. Kras mutant cells can have a nasty habit of rapid growth and metastasizing, but they may be actively stopped when smaller by milder means that are not standard but are better documented every year now. Even in 2010, we found there were cheaper, better answers available immediately for Kras tumors and we monitor (some of) them to varying degrees with CA199 and LDH added to the CEA, CMP and CBC. The first CA199 (all markers really) done near a pretreatment maximum is a very important piece of information for Kras directed treatments.

CA199 and LDH are quickly munged by heavy chemo (e.g. Folfox and Folfiri) and are probably a large part of why US oncs don't use them. This has not been our experience with metronomic oral chemo with milder drugs and natural adjuncts. Oncologists in other countries also use these markers.

...Wait 3 more months..

With viable Kras mutant cells that's a bad move for us, the markers and mets can move so fast. So we went with the immunotherapies that were available to us OTC or off-label and added them to metronomic (daily) oral chemo and IV vitamin C, with a high quality of life.

We try to avoid waiting on resistant providers and find ones that will help us, even if it's one time on an overseas consult (e.g. emailed records and a phone call).

[juliej]

Good job getting a second opinion appointment with Dr. Hochster!

We don't want to leave MSK but I feel like we don't have a choice. They don't reassign to another oncologist which is unfortunate.

One other possibility is asking for her to "conference the case" with other MSK oncologists, in particular with Dr. Kemeny. Then see what their take is on her "wait and see" approach.

[crazylife]

[quote="juliej"]Good job getting a second opinion appointment with Dr. Hochster!

JulieJ - have you heard good things? A friend who works in oncology research recommended him for CRC.

[juliej]

JulieJ - have you heard good things? A friend who works in oncology research recommended him for CRC.

I have heard him speak on panels and he is very smart -- on top of all the latest advances and trials and very well respected in his field. Just be very upfront about your expectations - for example, you don't want a "wait and see" approach now that there has been spread in the lungs. Talk about a plan - see if he agrees with resection of the largest nodule and ask about biopsies of any nodules in the vicinity at the same time. Come with lots of questions - ask about adding in Avastin after surgery or what he thinks of existing immunotherapy drugs or trials.

Hugs!
Juliej