Hi ... again

[Ontario Guy]

Hi, everyone,

My cancer is back and so am I.

A weird tale. Colonoscopies and scans after my 2012 bout with the Beast declared me NED. My CEAs (hi there, Muskoka Mike) over three years were all within acceptable norms. A colonoscopy last fall was clear. But …

I walked into a dehumidifier in the middle of the night last fall and gashed my right leg. It scabbed over. Then the leg began swelling, slowly at first, but enough to reopen the wound. It scabbed over a second time but the swelling continued and the wound opened up again. Lymphedema was diagnosed.

There were a lot of false leads looking for a cause, particularly that obvious culprit, thrombosis. Ultrasounds, a misleading CT, several weeks of anti-coagulants. The leg continued to swell - it became difficult to walk - and the original wound, despite daily attention from visiting nurses, got seriously infected. Finally, on December 23 a CT indicated a 2 cm mass blocking the main lymph duct from the leg.

Merry Christmas.

Another CT on the 28th revealed 9 nodules in my lungs and more lymph node involvement.

Happy New Year. Welcome to Stage IV.

The holiday break slowed down referrals - as we all know, cancer takes weekends and holidays off - but by mid-January my new oncologist and his team had me whisked into chemo for a test run of Irinotecan.

Wow. Having determined that I tolerated “I-run-to-the-can” well (and that it didn’t interfere with 24/7 IV antibiotics), the first full-blast FOLFIRI opened the sluices wide. One month into treatment, my leg weighed 7 kg less and it continues to shrink, helped along by compression bandages. The circumference of my knee is 9 cm smaller than at its peak.

The plan now is to do 3 more FOLFIRIs and then reassess. Chemo is what we all know it is (I had almost forgotten what the fatigue feels like), but I love being able to walk around without appearing to be auditioning for a remake of Frankenstein. The original wound still hasn’t healed - the infection is now MRSA and I have an appointment coming up with an infectious diseases specialist - but it is smaller and the surrounding tissue, which had deteriorated dramatically, shows daily improvement.

As I said, a weird tale. If I hadn’t injured my leg we probably wouldn’t have found out about the mets until much later on. My injury meant early detection.

Cancer is weird.

I won’t say it’s good to be back, but if I have to be back I’m glad it’s here.

Best to all,

OG

[bitchslapped]

That IS a weird, but well-told tale w/lots of twists & turns OG! Too often docs don't refer out to a Dr of ID for infection management when probably they should.
You definitely have a double whammy going on there.
Best wishes to you in getting a good response to FOLFIRI, & treatment plan/options in place @ time of reassessment.

BS

[Lee]

Wow, so sorry you are going through this. Have you had a PET scan? If it's possible, I would push for it, I know Canada can sometimes be a problem. Butt if you are dealing with a recurrence or spread, I would want to get a total picture of what I'm up against. It would appear some of the past test/procedures gave you misleading information.

All the best,

Lee

Edit to add if possible, 2n opinion at a major cancer treatment center.

[stu]

Oh I remember you and I am so disappointed that your back. But a big welcome despite that. Is your function getting better because the treatment is working? I do hope so.
Lots of support for you here,
Kind regards,
Stu

[teri3]

Sorry to have you back butt welcome. Some times things work in strange ways. Hopefully the irontecan will work . I had good results from Folfiri+avistin for lungs mets. Good luck and let us know how things go.
Teri

[Steph20021]

I'm sorry you're back fellow Canuck, but glad your hear. Infectious disease sucks. I had a brief dance with sepsis but my mom got sepsis may 2015 and is still dealing with the fallout: bed sores and physio and infections in her artificial knee and bed sore wound, it's been a lot of IV, homecare, and appointments for my parents. I sympathize with what you're going through.

[Ontario Guy]

Thanks, everyone, for your support and concern.

I don’t think it’s quite the right time for a second opinion. There are three aspects to my present predicament:

- the cancer, obviously
- the infection, and healing the original wound
- getting my leg back to something resembling a normal size.

The cancer is responding dramatically to FOLFIRI. For about 4 days after each infusion, I’m in the bathroom every hour and a half or so, night and day, peeing like a horse, and it’s all lymph. Even my new oncologist is surprised at how well this is going. Since my bloodwork is good, and there is improvement in the original wound, why do anything different? It is not unreasonable to assume that the nodules in my lungs and any other mets not yet identified have been similarly affected by FOLFIRI. There will be scans in 6 weeks when we reassess.

As for PETs, it’s true that no-one even talks about them around here. I don’t know why that is. Any Canucks here have ideas on this? CRGuy?

The ID specialist is a colleague of my oncologist in the same large health centre in London. He has been consulting on my case since day 1, another reason why the original wound is getting smaller.

And when all has been brought under a bit better control we can deal with any leftover swelling reduction through CDT. This will also happen in the same mega centre in London. In the meantime, my visiting nurses (angels all) are getting a headstart through daily wrapping with compression bandages.

Anyway, for now I’m going to trust that my team knows what it’s doing. If we get to a point where I think they don’t, or I’m not sure, I’ll be asking for another opinion in a hurry.

And thanks again, everyone, for being there.

OG

[michelle c]

Bugger! Sorry to hear what you have been going through. Sending best wishes your way xx

[KElizabeth]

Ugh! Sorry to hear your leg has been a stinker. It is good you found the mets. I know it sucks though.
The Irinotecan is pretty predictable once you get going. I pretty much know what's going to happen on each day of my chemo cycle, and that really does Make it easier.
I hope it does some wonders for you! Maybe once your leg heals you can add some Avastin and really take a crack at it.
Best wishes!
Elizabeth

[DarknessEmbraced]

I'm so sorry to hear your cancer is back and that you're having such an awful time with your leg!*hugs* I hope they can find an antibiotic to cure your infection and that your chemo side effects get better!*hugs*

[CRguy]

Jeez Louise buddy !!!! ... just wanna keep things "interesting" I see

The cancer is responding dramatically to FOLFIRI.

THAT is huge ! KEEP on with that response please
the leg and lymphedema = YUP use your experts .. if it's working = keep going !

PET scans in the Canuck heartland .... ?????
No idea WHY they seem to be so elusive / difficult to get / hard to get referred for ... ?????????

seriously, even out here I have had only 1 over the past 10 years of CRC bullshit I've gone thru.
Was a confirmation of a lung met which we basically "knew" was CRC anyway ... BUTT they just wanted to see wazzup in the resta' me
( gladly NUTTIN' !!! )

I think the deal is : PET ( PET/CT ) are $$$$$ and plagued with many false positive findings ... ergo = only use as last resort.
I kinda see that logic and would not use them as a diagnostic screening ... BUTT
... if we gotts a "thingy" .. and we want to see IF the thingy is "hot"
...... Do the effin PET !!!!!

I know Ont is bad for not doing PETs .... BUTT don't know if it is $$$ related OR just not "validated" in the healthcare system scenario ...?????

Keep ON kickin' Canuckian CRC ASS !!!!

Mega CHEERS buddy
CRguy on the Journey with you

[PainInTheAss]

Thanks, everyone, for your support and concern.

I don’t think it’s quite the right time for a second opinion. There are three aspects to my present predicament:

- the cancer, obviously
- the infection, and healing the original wound
- getting my leg back to something resembling a normal size.

The cancer is responding dramatically to FOLFIRI. For about 4 days after each infusion, I’m in the bathroom every hour and a half or so, night and day, peeing like a horse, and it’s all lymph. Even my new oncologist is surprised at how well this is going. Since my bloodwork is good, and there is improvement in the original wound, why do anything different? It is not unreasonable to assume that the nodules in my lungs and any other mets not yet identified have been similarly affected by FOLFIRI. There will be scans in 6 weeks when we reassess.

As for PETs, it’s true that no-one even talks about them around here. I don’t know why that is. Any Canucks here have ideas on this? CRGuy?

The ID specialist is a colleague of my oncologist in the same large health centre in London. He has been consulting on my case since day 1, another reason why the original wound is getting smaller.

And when all has been brought under a bit better control we can deal with any leftover swelling reduction through CDT. This will also happen in the same mega centre in London. In the meantime, my visiting nurses (angels all) are getting a headstart through daily wrapping with compression bandages.

Anyway, for now I’m going to trust that my team knows what it’s doing. If we get to a point where I think they don’t, or I’m not sure, I’ll be asking for another opinion in a hurry.

And thanks again, everyone, for being there.

OG

Where exactly was your mass in your leg? In the upper leg blocking the main lymph flow or near where the swelling is? Did you have any pain or swelling before you bumped your leg? Very sorry your getting this difficult news.

[Maia]

Hi, Ontario Guy! Really sorry you are here again for this reason, and all what you have been through *but* really happy to read that the treatment is going well. Your plan sounds good --let's take care of the leg and present situation first, which you're doing with good results, and wait to see what's needed later. Do you know your MS status (if you're MSS or MSI-high)? That's the only thing I would suggest to find out (it's on the records, probably) while you get better : )

[Ontario Guy]

Thanks, everyone, for your responses.

Darkness: the nice thing about my present set-up is that the ID specialist, who I haven’t met yet but has been consulting since I started treatment, correctly prescribed exactly the anti-biotic I appear to need: Sulfatrim. Infection is slowly diminishing. It will take a long time - MRSA is a nasty thing - but we seem to be winning the battle already. It’s also an oral drug, a lot better than the IV stuff I was on before. I got woken up at 2:30 a.m. by balky pumps a couple of times too many.

PITA: The mass identified as the cause of lymphatic obstruction is on the right side of my pelvis. One of the things that got everyone running around in all the wrong directions was that the swelling was/is pretty evenly distributed all over my leg (from toes to thigh, and occasionally crossing over into my abdomen and - eek - genitals). There were no symptoms of any kind whatsoever until I banged my leg.

Oddly, the only time it became painful was when a well-intentioned internist at our chemo clinic advised me to stop taking anti-inflammatories at the time of our test run of Irinotecan. Within 48 hours I was on Dilaudid. As it happens, my oncologist countermanded the internist’s order and a couple of weeks later I stopped the painkiller. Actually, I kept forgetting to take it.

CR Guy: thanks for the analysis. Our people are really big on CTs and MRIs which seem to have done the job well, at least so far. When we get to reassessment I might push a bit harder for a PET. We’ll see.

Maia: what is MS status (MSS, MSI-high)? Something to do with metastasis, I’m guessing. I should point out that no-one has done a biopsy yet. Everyone from the radiologist who did my CTs to my oncologist to a couple of residents and an intern at the cancer centre all said “uh, yeah, mets; get busy”. Biopsy later, if required. Good decision.

A final thought for this morning. I don’t know if this is the case elsewhere, but my experience with the health care systems in Québec and Ontario is that they are obsessed with looking for cardio-vascular problems to the point of blindness. My GP back in Montréal spent years fretting over my cholesterol levels and blood pressure when it would have been a lot smarter to send me for a colonoscopy.

Recently, I had a near altercation with an ER doctor who had the results of my latest CT in his hands but still wanted to send me for an ultrasound. Why, I asked. It’s been three weeks since you had one. Um, it’s not a blood clot, it’s cancer. Well, there could still be a blood clot. He only backed down after calling my surgeon at home (during the holidays - the guy took the call - aces in my book) and getting told off.

Anyway, thanks again, everyone, for your concern. It’s nice to be among people who know what you’re going through.

Best,

OG

[Maia]

Maia: what is MS status (MSS, MSI-high)? Something to do with metastasis, I’m guessing. I should point out that no-one has done a biopsy yet. Everyone from the radiologist who did my CTs to my oncologist to a couple of residents and an intern at the cancer centre all said “uh, yeah, mets; get busy”. Biopsy later, if required.

Of course, get busy first, that was the right decition. MS ("microsatellite status") is not related to metastasis, it's there (one way or the other) since the primary.
Since the last time you were around, , determining MS status has been a game changer, recently, to know if certain immunotherapies work for CRC RIGHT NOW (those with MSI-High, a %5 of CRC) or if a combo of immunotherapy + something else is needed (for MSS, the %95 of CRC). The combos for MSS are being explored in clinical trials (SO many) but for those MSI-High, treatment has changed dramatically, already. You can check on this forum those who are MSI-High (in their signatures), and they are doing pembrolizumab (Keytruda) or nivolumab (Opdivo).

You're invited to see this video from some weeks ago:

http://www.onclive.com/peer-exchange/cr ... tal-cancer

Friday, Feb 17, 2017
"MSI Status and Immunotherapy in Advanced Colorectal Cancer"

"Why do we, all of a sudden in every patient with colon cancer, need MSI (microsatellite instability) testing? "

(...)
John Marshall, MD: Well, to be fair, let’s say I do this and I get back a positive result for MSI. I can just go get a checkpoint drug? What are you talking about?

Johanna Bendell, MD: So, interestingly enough, both pembrolizumab and nivolumab are compendia listed for patients with microsatellite-instable colorectal cancer. So, in some senses, yes, you can. I would actually recommend getting these folks on clinical trials.

John Marshall, MD: Should I give a frontline patient a checkpoint inhibitor right from the get-go?

Johanna Bendell, MD: That’s a huge question that we don’t know the answer to yet (...)

John Marshall, MD: Tony, I’m going to put you on the spot. You have a patient with metastatic colon cancer, it’s MSI-high, they’re a brand new diagnosis. What’s going to be your frontline treatment?

Tanios Bekaii-Saab, MD: I actually would use a PD-1 inhibitor. I’ve had more than just anecdotal experiences with patients who were very symptomatic, high tumor burden, who actually had significant responses to PD-1 inhibitors. Those are patients that do moderately well with chemotherapy, and we always have the opportunity to put them back on chemotherapy. (...)

Alan P. Venook, MD: (...) as Johanna said, though, the NCCN guidelines include both nivolumab and pembrolizumab, recommending MSI testing right off the bat. In fact, we’ve had no trouble getting either of those drugs for patients with metastatic colon cancer." (...)

John Marshall, MD: Could you just give us a little summary of where we are in developing immunotherapy for microsatellite colon cancer?

Johanna Bendell, MD: Microsatellite-instable colon cancer is only about 5% of patients with metastatic disease. So, what do we do for the other 95% of patients? Is there a way to convert these patients into responders for immunotherapy? That’s the big subject of research right now. I presented probably just the first crack at it, and certainly, there are a lot of studies that are coming that are looking for different ways to try to rev up the immune system to have more of an immune presence within the cancer cells, to bring T cells into the cancers to get that immune therapy going and working for those patients as well. This particular study was using a MEK inhibitor, cobimetinib, to do that, and we know that when you give a MEK inhibitor in tumor models, it increases CD8-positive T cells within the tumor, it increases expression of class 1 MHC. So, when we gave that in combination with a PD-L1 inhibitor, atezolizumab, we saw some responses in patients with microsatellite-stable colon cancer. It’s just the first step along the way, and I think there’s a lot more development to come. "

Panelists: John Marshall, MD, Lombardi Comprehensive Cancer Center; Alan P. Venook, MD, Helen Diller Family Comprehensive Cancer Center; Tanios Bekaii-Saab, MD, The Mayo Clinic; Johanna Bendell, MD, The Sarah Cannon Research Institute

Thinking of it, I'm going to post it separately