The Colon Club

Send him our best .

He has come so far . I am
Still holding out for a good outcome for him .
Sounds as though he has his own physio in hand .
Stu

Things are moving fast, which I'm happy about. Yesterday we met with both onc and radiation onc. Onc is requesting NGS and PD-L1 testing using fresh biospied tissue from the lumbar tumor recurrence; he's pushing for localized treatment (radiation) but wants a "plan B" in place, too, should systemic treatment be needed at some point. Last week's PET showed "abundant necrosis" at recurrence site, which could mean that the adjuvant Xeloda DH did back in June following LAR had some effect? Anyway, it will be good to get a more recent mutation panel.
Radiation onc made a referral for OHSU, where DH had SBRT in February 2019; in preparation, she scheduled him for an MRI for next week. Our local hospital has SBRT capabilities, but OSHU sees such a larger volume of patients, it's better we go there (considering proximity of tumor to the spine).
Meanwhile DH can now walk unassisted (he only uses the walker to get up from our low couch); he's still dealing with bouts of clustering, but hasn't had any accidents for a while and with careful meal scheduling, he can leave the house for a few hours.

Forging on!

Claudine: It’s great to hear that he’s getting around on his own and can leave the house a bit. He’s showing impressive strength, and getting some QoL back is a huge victory! Good luck with the treatment plan.

Great progress Claudine, very happy for DH. I remember when I was finally able to walk, it was like coming back to life. Also, the necrosis is a great sign! Good news all around, may you continue on this path.

Hi ,

Can’t quite get my head around this . But mum had a gastric bleed . Emergency admission and they found a pelvic fracture due to a trauma incident and incidental finding of a lung met and chest lymph nodes . Only complicated by my dad having a bad cerebral bleed two days later .
To be honest I have not summoned the energy to even react to the cancer aspect . Sneaked back in after all these years . Going for a biopsy as the respiratory surgeon said it’s looking more like her original tumour recurrence than a new lung primary .

She lost half her blood volume due the gastric bleed but despite it remained remarkably stable in theatre . Making a good come back in her strength . Poor dad struggling away and we have sat a few nights with him . He developed AV and a chest infection . We went out to let the nurses do some work . Came back in twenty minutes later and he was semi reclined . Opened his eyes , titled his head and said “ Boo” . Nearly fell off my chair . The staff brought mum down in her bed to say goodbye but they are both holding on .

I am shaking my way through the days but I know they are both made of strong stuff .
Take special care and we will navigate these stormy waters with all the skill and experience at our disposal.
Stu

Stu: Wow, that’s a lot of challenge all at once! I’m sorry to hear this, and I hope both of your parents recover well, and soon. Wishing you strength and clarity as well!

Do you know what caused your mother’s GI bleeding? My mom had a similar incident some years ago that turned out to be an ulcer (lost a similar % of blood volume). She had an emergency surgery that resolved it. Unfortunately, it wasn’t diagnosed soon enough and she had several falls, causing fractures that plague her to this day. But she recovered well otherwise, and is now 90 (not bad!). It sounds like they got to this in time, which is good.

The possible recurrence is really disappointing, especially as your mother was so far down the road. While nodes (plural) sounds a bit scary, your mother is a veteran at this point, so I hope that this development is just another speed bump for her. Perhaps the bleed will turn out to be a blessing in disguise since they found and can now treat the other stuff.

Best wishes to you all!

Hi roadrunner,

I am finding it hard going into the hospital as daily it seems it’s bad news all the way . Doing my best though .

My mum has had gastric varicies from her last larger liver resection . She was on beta blockers to slow the pressure of blood flow as she can’t take blood thinners . To be honest she has been like this for years and no issues . However she was pretty constipated with codeine. Not sure but might have been enough to put extra pressure on them . She has had three scopes and they have injected a lot of them now . But she was tired as they were one a day for a few days .

She is one strong lady and I see her gaining strength . Even if they do nothing I think she has good quality time still .

But if she gets a treatment option I think she will give it a go .

It is pulling me part seeing my dad not having food for so long but thankfully they were able to restart some last night .

Two at once is most taxing and affecting us all .

This is her third recurrence so you are right . We know the ropes and she has absolutely no symptoms . But then again she has actually come to her 13 th year and never had a cancer symptom .
Odd to think it’s been in there for so long .

I have been thinking the same . It could have been months down the road before we knew about this had she not had a bleed and only found out as someone noticed a small amount of fluid at the bottom of her lung and they decided on a chest Ct .

One day at a time for sure ,
Hope all is well with you ,
Stu

Oh Stu I am so very sorry. Both parents struggling at the same time, that is so hard! And I thought your mom was completely “out of the woods”...
Wishing you strength for the days to come - like you say, one at a time. Your mom is a fighter!

Quick update. We flew back last night from Portland (OR), where we met Dr Nima Nabavizadeh, a radiation oncologist and SBRT specialist at OHSU. After reviewing DH's case he agreed to treat, even though "we're entering uncharted territory" (his words) since this will be the third time that area of the lumbar spine gets irradiated (EBRT Spring 2018 and SBRT early 2019). But this is a case where such aggressive, localized treatment is warranted, since DH hasn't developed any other mets despite having been off chemo for almost 3 years. Plus, NOT treating would mean progression, so the risk is worth it. To limit it, sessions will be every other day instead of every day (5 sessions), starting Monday the 14th and ending Wednesday the 23rd - just in time for Thanksgiving! So we're off again to Portland next weekend, incredibly grateful for the close friends we have there that can provide housing and company...

Claudine: This sounds like great news! Good that you found a an open-minded specialist. It seems to be “pushing the envelope” a bit, but that seems to have worked well so far in your husband’s case. It’s clear that cancer care has so many modalities now that they can address uncommon cases like your husband’s in optimal ways, and the trick seems to be finding those willing to do so. Good luck with the “uncharted waters” : )

Thanks roadrunner! Yes, that's what the doc said - places like OHSU are more likely to "push the boundaries" than a smaller, local hospital. He also called his predecessor (now the head of radiation oncology at an even larger place) who did DH's treatment in 2019, and who agrees that re-irradiating is warranted.

Excellent news . Just the window of opportunity he needs .
Hopefully they will write his case up and others will benefit too !

Keep pressing forward .

Mum got an appointment with her oncologist but going to see if we can push it back a week . Just buried dad yesterday and had a really touching tribute to him but feel another week would do her good .
Take care ,
Stu

Quick update. DH finished 5 sessions of SBRT to L3 and L4 at OHSU last week. He came home just in time to celebrate Thanksgiving! The first two sessions were very painful (probably because of inflammation), but the last 3 went fine. He's already noting a great improvement in his ability to walk (he doesn't need a cane anymore), and much decreased back and leg pain. Unfortunately, but not surprisingly, radiation worsened his LARS, so now he's dealing with bouts of diarrhea (in addition to clustering). Hopefully that will improve with time. Next appointment with onc on December 22, and, I suppose, scan/MRI in the next few months.

Sending positive best wishes for moving forward.
Sometimes we do need to just go one step at a time even if it seems we go
one step forward ... 2 steps back !

Every Journey of one thousand miles ... begins with a single step
Keep on stepping forward on the Journey

CRguy

I hope his radiation goes well. *hugs*