Bad MRI results...

[BeansMama]

FOLFIRINOX is a tough cocktail. DK37's post on the effects of fasting prior to and during chemo treatment days are extremely intriguing-- please read it if you havent yet, maybe its something that may help you during the treatments.

Also, there were many, many Opdivo/Keytruda/ Atezolizumab trials for MSI high CRC patients just a year ago. I havent looked lately, but please give serious consideration to checking into them.

God bless you and I will pray for your healing.

Thank you,
My onc is looking into Opdivo I believe, not sure which others.

[BeansMama]

I truly am sorry that the news is not good right now. With so much to fight for I hope you will respond to the next line of treatment. While there are still options there is always hope...

Thank you

[BeansMama]

Ugh--so sorry to hear this news. I don't post so much these days but have been following your story. Maia gives excellent advice about immunotherapy. There was another member here (MichelleCairn, maybe?) who applied to the pharmaceutical company's patient assistance program for access to Keytruda. I'd strongly advise looking into this, particularly if you're concerned about your eligibility for a clinical trial. There are a few other Lynch-positive members here who've had amazing success with these drugs and, if I'm recalling correctly, the side effect profile is a LOT better than either FOLFOX or FOLFIRI.

Best of luck! We're all pulling for you to get that surgery.

Thank you, we are looking into the immunotherapy. my oncologist is doing the research.

[chrissyrice]

Hey BeansMamma,

I just wanted to let you know I am sending you prayers and peace.

Sounds like you are going to get some good treatments with the new drugs out there to treat your tumors.

You can rely on us to support you and we love your positive attitude.

Chrissy

[BeansMama]

Immunotherapy is a good advice as well since you are Lynch positive. Don't give up. You have more than one option.

I would ask about immunotherapy also. I am still not understanding if it is for Lynch or MSI (or if they are even the same thing) but I have had good success with it, my last scan was mixed....but it did eat one of those suckers so I am anxiously waiting my next scan in Dec to see what it has done since August.
I did have first the colon removed and then liver resection but those dang lymph nodes kept popping up so I dont know if they are wanting to resect your liver first or what...
I have been on it a year now and am just starting to have some side effects...
Still keeping you in prayer that your resolution will come quickly!
Wonderfullymade

We are looking into immunotherapy drugs. Thank you for the information! They will not resect my liver until the tumor shrinks again.

[Marejenny]

Hey there again, BeansMama,

I request from the whole group online tonight, let's pray, sing, play guitar, whatever mode you choose, say to God, please shrink that tumor!!!

[BeansMama]

Fudge!

Not sure if this was already brought up, but could you try TACE, SIRT or some other chemo embolisation of the liver to get the fricking thing to shrink? It seems that systemic approaches fall on deaf ears with your cancer - just thought this because you had no response to Cetuximab and Folfiri - so maybe local treatment is worth a try?! Just throwing around ideas because I am rooting for you to have this surgery.

Bon courage!

They have mentioned liver targeted therapies, but they are also afraid of damage to my liver which would mean I would never be able to have the resection.

[Lee]

BeansMama,

Thinking of you,

(((HUGS to BeansMama)))

Lee

[BeansMama]

Immunotherapy is a good advice as well since you are Lynch positive. Don't give up. You have more than one option.

I would ask about immunotherapy also. I am still not understanding if it is for Lynch or MSI (or if they are even the same thing) but I have had good success with it, my last scan was mixed....but it did eat one of those suckers so I am anxiously waiting my next scan in Dec to see what it has done since August.
I did have first the colon removed and then liver resection but those dang lymph nodes kept popping up so I dont know if they are wanting to resect your liver first or what...
I have been on it a year now and am just starting to have some side effects...
Still keeping you in prayer that your resolution will come quickly!
Wonderfullymade

Thank you for the information on the immunotherapy, we are looking into it. My surgeon won't do the resection of my liver unless it starts shrinking again.

I am worried they won't even with getting a strong chemo cocktail.

Thank You For The Prayers.

[mariane]

All the best for you,

[WriterGirl1969]

Just wanted to check in on you, Beans. How's it going? You doing okay? Any changes?
We're thinking about you!!!

Hugs and Prayers,
Tracy

[Lee]

Just wanted to check in on you, Beans. How's it going? You doing okay? Any changes?
We're thinking about you!!!

Hugs and Prayers,
Tracy

Ditto to what Tracy said. Thinking of you!

(((HUGS)))

Lee

[Rob in PA]

Thinking of you beans mama. Haven't been on here for a while and just saw. Kick butt!

[LPL]

Hi BeansMama,
Sending a Lot of warm hugs & positive vibrations to You from France. I've not read here lately, have had an accident (so unable to be the caregiver in our home - in wheelchair now) and I just saw this post/thread.
Have you started the new treatment? If so I hope it is kind to You and terrible to the tumor!!
Kind Regards /LPL
P.S. If I could I would send some of my platelets to you, I have too many...

[BeansMama]

Just wanted to check in on you, Beans. How's it going? You doing okay? Any changes?
We're thinking about you!!!

Hugs and Prayers,
Tracy

I'm hanging in there. My first treatment with Folfirinox and Avastin was very difficult. It made me really sick. I'm finally feeling more like myself and I go for my next treatment tomorrow.

We will have to have a frank discussion with my oncologist, either we need to manage the side effects better or we need to reduce my doses. The biggest issue is hydration to flush the chemo out of my system. The metallic taste is so bad I just don't want to eat or drink. It may come down to trying to see if I can get an infusion nurse that comes to my house to give me iv hydration. Hubs would bring me to the oncs office to get it but it would take so much out of his workday it would make things difficult.

I'm hoping everything I am going through is worth it. Hubs said seeing me so sick is very hard on him. I'm glad he finally opened up to me about it and I understand where he is coming from. I know it is hard on the girls too.

We are banding together to get through this, I just hope we can make the upcoming rounds easier.