My Stivarga streak has ended

[JJ2212]

So, after 26 cycles (months) on Stivarga, my good luck has ended. My last CT scan showed progression

I've had a crappy few months that can now be explained by cancer progression. What the docs suspected to be a pulmonary embolism turned out to be an enlarged lymph node blocking my middle right lung lobe, which is completely collapsed. The lymph nodes in my neck that lit up on my PET scan are no longer thought to be inflammation but are deemed to be mets. Stivarga managed to kill off my lower left lobe thingy that we'd been tracking for 2 years, but a new one popped up in my upper right lobe, with a couple more spots too small to measure.

My onc and his resident were sympathetic, but reminded me that my response to Stivarga had been exceptional. I was considered a rock star on the trial, knowing that the average progression-free response was around 3-4 months, whereas I had a good 2 years.

So, another go-round the roller coaster is about to begin. I have an appointment with the radiation oncologist on Wednesday to see what my options are for my lymph nodes causing collateral breathing issues. On e same day, I start FOLFIRI for the first time.

I'm doing OK but I have tons of questions about the best approach to take, and very little interest in doing reasearch. I know I need to be my own advocate, but radiation to the lungs scares the crap out of me and I feel like hiding my head in the sand. Silly me, I'm currently obsessing about wether or not I'll lose my hair.

Also, the timing sucks. I was leaving for an amazing 2-week trip to Hawaii with my favorite peeps in 10 days. I had to cancel the trip, turning what was to be an amazing time into a bummer for everyone involved.

So, there you have it. I'm left wondering if this the beginning of a downward spiral, or just another bump in the road.

Thanks for 'listening'.

Janie

[Maia]

So sorry to hear. Where are you treated, in Montreal? Do you know your MSS status?

[Maia]

You might have immunotherapy options. Like this trial
https://clinicaltrials.gov/ct2/show/study/NCT02554812

You can put Canada in the search box of the Clinical trial Finder in my signature.

[CRguy]

Janie,
please check out my post : BCCA POG program updated
and ask your docs if they are connected with this program or have access to it ?

Sending best wishes and posi-Vibes your way my friend
keep fighting the good fight !

CRguy

[JJ2212]

Thanks Maia and CRguy. I'll look at those links before my next appointments.

I'm mss. My onc recommended I try FOLFIRI since it is the usual 2nd line of treatment and often a required step before going down the clinical trial route. Is that trur, or just BS on his part?

[Maia]

Is that trur, or just BS on his part?

It is not BS because, yes, many trials (specially, those that are for chemotherapies) ask you to exhaust standard of care options first. BUT it is not true!! MANY (immunotherapy) trials are for people just diagnosed (I'll post one in a minute), others are for Stage I, II or III patients (who, obviously, had only on line of chemo) AND many clinical trials for stage IV admits patients who just had maybe 1 line of standard of care and consent on the trial. In fact, for immunotherapy to work, you NEED to have some remaining immune system, preferably some liver good function --all that is gone for many who had all chemo lines.

[DarknessEmbraced]

I'm so sorry!*hugs* I hope your new treatment will help!*hugs*

[Lydia666]

Janie, if you want to grab a drink with me, i am here.
Are you sure you can't go to hawaii? It's not that much of a delay.
All the best dear friend!

[KElizabeth]

You may have a good response on Folfiri and maybe the devil you know could be no worse than the devil you don't.
Folfiri isn't the worst. I have tolerated it well enough to be employed full time and still cart my kids everywhere. I've had no hair anywhere for 17 months and I'm quite used to it now. I don't have to do hair stuff in the morning and have had baby soft skin without shaving. The worst of it is the diarrhea but it's not much worse than I had with Folfox. I guess I'm trying to say that trying folfiri and loosing your hair for a bit is not worse than cancer taking over your lymph system.
BTW,I found a really cool hat maker on Etsy. Let me know if you ever need the link.
Do you know if you are KRAS mutated or wild type?
I've had Avastin each cycle with folfiri and it has kicked some serious behind! I think if you are wild type they will give you erbitux before Avastin, but I could be wrong. I think both are very good at what they do.

[rp1954]

...So, there you have it. I'm left wondering if this the beginning of a downward spiral, or just another bump in the road.

It often depends on what we do. Often standard medical "actions" are doing nothing - waiting and watching, unfruitful searching for a trial, or going home empty handed from the dr. We don't really believe in any form of doing nothing.

I'm not a fan of chemo vacations. whether witting, unwitting or an oncologist's "I've got nothing more". Prolonged vacations, even short ones can rapidly lose ground in mCRC. We've seen it many times here. Some people have had slow growing mCRCmets or slow rising markers, but many are pretty fast, like markers doubling in 1-5 weeks even without inflammatory distortions.

From my perspective you have 2 ready treatment choices:
1. Folfiri + whatever alternative add-ons that have some experience that you can develop some confidence with
2. EXACT (celebrex + metronomic xeloda) + " " ...alternative add-ons " " "

The other thing that you can do is target and monitor more markers than standard clinical medicine, more like researchers and some alternative doctors. I've listed more commonly available lab panels and marker add-ons that are useful to us for mCRC. There are other markers that are far more specialized, pricey and tedious to get, like cytokines. We've used a variant of the second option to get highly consistent lab readings without much inflammatory distortion.

The most basic blood marker add-ons are probably LDH, ESR (sed, sedimentation rate), hsCRP and CA19-9. The first three panels are very inexpensive for the lab to run. These three are included in many custom "Chem23" or "Chem26" packages that could replace the common CMP package (roughly a Chem20) for nominal costs in some labs. I'm not kidding, a lot of people are dying because they are missing $25 - $100 worth of information in their blood tests, plus the incremental treatment costs. Our "incremental treatment costs" actually save us a lot of money.

[Maia]

From my perspective you have 2 ready treatment choices:
1. Folfiri + whatever alternative add-ons that have some experience that you can develop some confidence with
2. EXACT (celebrex + metronomic xeloda) + " " ...alternative add-ons " " "

I agree, rp1954, of course. I just got tired of pointing out to Xeloda + Celecoxib (ADAPT) --since it's not a magic bullet, with spectacular results, people get the feeling that 'it doesn't work' (but the same is not said about things with such a modest benefit like Stivarga (when any) or Lonsurf--. Not everyone responds, but I wonder how many would benefit with slower progression or even same stability from trying ADAPT/XCEL, instead of chemo breaks OR when no option is left.
The science for metronomic dosing is there too --it's quite proven that re-visiting agents, at lower and continued doses *resensitize* to the already used chemos-- why don't try that?
And you also can add a chronomodulated dosing of Xeloda --why don't try that, for less side effects and more effectiveness, if at the end of the day one is taking the same maximum tolerated dose? Literature is also there.

And of course you also can do all the careful extra-labs monitoring that you do for your loved one, rp1954, and all those careful arranged supplements and off-labels. But you have to agree that that takes a time and understanding of chemistry that it results difficult for most people : )

I prefer to point people to immunotherapy trials these days (well, since years... but now results are more usual and people start to "believe" the science), since it's something becoming standard of care, that at least some oncologists start to see *not* as last resource.
Sorry for the mini rant. A close friend got bad results and I'm kind of down and angry today.

You DO have many paths to follow, Janie. The fact that *you* responded so well to a drug for which usually there is so little benefit (and so bad effects) is very encouraging! Where are you treated? Can you travel, inside Canada?

[JJ2212]

So I had my first FOLFIRI treatment today. It wasn't as fun as I expected

I usually just slept through FOLFOX infusions, but no such luck today. I has a small allergic reaction and we had to stop the infusion to get some benadryl going. It's a few hours later and I feel like I have a really bad hangover, without the party that comes before it.

Oh well. One down, who knows how many to go...

Janie

[Achilles Torn]

Hey Janie,

I might have missed it in your posts but are you getting Avastin (Bevicuzimab)? Or if you are KRAS wild Erbitux ?

You probably are but if not ask your Oncologist

Cheers
AT

[Lydia666]

Well done, Janie! I am glad one is out of the way. What's the frequency of treatments? How many are they aiming for?

Keep us posted on the results.