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Re: If you want prayer stop in here!

Posted: Tue Aug 13, 2019 3:40 am
by Pyro
Thank you folks, I KNOW it helps. My oncologist punted until next week, told me I still needed to heal from my emergency blockage surgery. I’ve missed 3 infusions at this point and I don’t meet with the oncologist until next week, he knows where my heart lives in this issue. Comfort care sounds so good.

Re: If you want prayer stop in here!

Posted: Sat Aug 17, 2019 9:09 am
by Mohrfamily
Please keep up the prayers my DH had and MRI this week that contradicts what the PET says that his liver is worse the MRI and CEA say smaller not bigger!

Hope is alive and well in His name and my soul!

Re: If you want prayer stop in here!

Posted: Wed Aug 21, 2019 5:16 am
by jep
Hey everyone . . . my husband and I will be heading off the the hospital this morning for his ARP surgery (he is also have 2 para aortic nodes removed) . . . Please pray for him . . . thank you!
jep

Re: If you want prayer stop in here!

Posted: Wed Aug 21, 2019 5:29 am
by Wewillfight
@pyro

I pray for you.

Just wondering would youse consider trying the stivarga+keytruda combo before stopping chemo or is that what you have tried.

All the best to you and fam

Re: If you want prayer stop in here!

Posted: Wed Aug 21, 2019 5:52 am
by stu
All the best Jep ! Looking forward to hearing he is safely through .
Stu

Re: If you want prayer stop in here!

Posted: Wed Aug 21, 2019 9:08 pm
by boxhill
I have been thinking about our member from New Zealand who is a Salvation Army member and quite a devoted Christian (self described). I wondered if anyone here might know how he is. I haven't seen a post from him for a long time and I have been worrying. Unfortunately I can't recall his screen name.

Re: If you want prayer stop in here!

Posted: Wed Aug 21, 2019 9:57 pm
by CrossfitChick1980
Hello, I would like to request prayer. Ever since my husband passed away, I have been struggling in so many ways. For those who pray, please pray for me, our 4 daughters, and the will to continue on despite this life being so different.

Re: If you want prayer stop in here!

Posted: Thu Aug 22, 2019 4:46 am
by Mohrfamily
Jep, pyro, and Cross fit

I will think of you all today (continued for pyro)

My husband is terrified of surgery also but understands its a necessary thing if he wants "cured"

CrossfitChick1980 : I hope and pray for your "new normal" to ease in difficulty as time passes.
I pray that this is a post I never have to make on behalf of my husband's own diagnosis as our children are 5 and almost 8 and my step son 11 next week! You and your family are in my thoughts and prayers

Re: If you want prayer stop in here!

Posted: Thu Aug 22, 2019 8:49 am
by Pyro
Wewillfight wrote:@pyro

I pray for you.

Just wondering would youse consider trying the stivarga+keytruda combo before stopping chemo or is that what you have tried.

All the best to you and fam


I am MSS, that being said I did Keytruda and it failed. I’ve tried all primary and secondary treatments, I’m not a trial type of person either. I will not go into the last best days of life suffering from chemo/treatment.

Re: If you want prayer stop in here!

Posted: Fri Aug 23, 2019 1:12 am
by Wewillfight
Pyro wrote:
Wewillfight wrote:@pyro

I pray for you.

Just wondering would youse consider trying the stivarga+keytruda combo before stopping chemo or is that what you have tried.

All the best to you and fam


I am MSS, that being said I did Keytruda and it failed. I’ve tried all primary and secondary treatments, I’m not a trial type of person either. I will not go into the last best days of life suffering from chemo/treatment.


Totally with ya but this is becoming a main stream 3rd line of treatment now off label

https://www.targetedonc.com/news/regora ... h-mss-mcrc

I hope you are doing okay.

Re: If you want prayer stop in here!

Posted: Fri Aug 23, 2019 1:01 pm
by Pyro
Not with this.....

All-grade treatment-related adverse events (TRAEs) were seen in 100% of patients. The rate of grade ≥3 TRAEs seen overall was 40%. The most common grade ≥3 TRAEs were rash in 12%, proteinuria in 12%, palmar-plantar erythrodysesthesia in 10%, and liver dysfunction in 6%.

Re: If you want prayer stop in here!

Posted: Fri Aug 23, 2019 3:10 pm
by Wewillfight
Did you have bad reaction from keytruda when you tried the monotherapy?

You withstanded alot with other chemo agents ... i wouldnt think reactions will be any worse than say cetuximab which but significant time for many and is manageable

Just spinning this as gunning for you to beat this awful thing

Youre a warrior - i wish you all success with any option chose.

Re: If you want prayer stop in here!

Posted: Sat Aug 24, 2019 1:02 am
by Rock_Robster
Pyro wrote:Not with this.....

All-grade treatment-related adverse events (TRAEs) were seen in 100% of patients. The rate of grade ≥3 TRAEs seen overall was 40%. The most common grade ≥3 TRAEs were rash in 12%, proteinuria in 12%, palmar-plantar erythrodysesthesia in 10%, and liver dysfunction in 6%.

Full-dose Rego has a pretty disappointing TRAE profile, so it would be interesting to combine a PD1 inhibitor with the results of the REDOS trial = dropping the Rego dose way down and seeing if the same response can still be achieved.

Re: If you want prayer stop in here!

Posted: Sun Aug 25, 2019 10:27 am
by Pyro
Wewillfight wrote:Did you have bad reaction from keytruda when you tried the monotherapy?

You withstanded alot with other chemo agents ... i wouldnt think reactions will be any worse than say cetuximab which but significant time for many and is manageable

Just spinning this as gunning for you to beat this awful thing

Youre a warrior - i wish you all success with any option chose.


I appreciate your help but I’m not beating this awful thing. 90 chemo treatments and multiple surgeries on the same organs only to have it come back in those organs tells me something. I’ve been through to much treatment pain to ever do it again, it’s just too much, patients quality of life is so low on these treatments and I’ve lived it for 4 years. I’m terminal, I’m not going out with chemo in my veins nor be the person that enters hospice 2 days before passing. I have vacations planned and most of my bucket list is complete. I’m a Christian and will go somewhere better where my insides don’t hurt most of the day. I feel better now, mostly recovered from my blockage surgery and going to live it up for a while.

Re: If you want prayer stop in here!

Posted: Mon Aug 26, 2019 3:06 am
by stu
Hi Pryo ,

You remind me of someone from my youth . He always seemed talented , musically, intellectually but his sense of humour was what set him apart . He became a thoracic surgeon and to broaden his training he left our shores for a bit and went to one of your finest hospitals . It was there that he discovered he had a rare blood cancer . The reality not lost on his wife , also a medic . He took what he could but also knew when to stop and allow his faith to take over . He wrote a small book . For me a difficult read but a reality .After he wrestled with where you are at and came to a decision and proceeded in that path he focused more on making his days count .

Hope we can support you here as you live life to the fullest where you can . That’s what matters now . Keep the photos coming and we can keep you in our hearts and prayer .
Stu