Bad MRI results...

[lpas]

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.

[BeansMama]

Hey there Mama Beans.
Holding up my sword on your behalf to cut that sticky cancer monster down! I will be praying my most warrior-driven prayers to whip it's sucky cancer butt so that you can have your surgery and get NED! It's okay to feel down. We will do our best to lift you back up on our many hands and hearts, which are with you, behind you and beneath you.
All my love, dear.
Hugs and Prayers,
Tracy

Thank you Tracy, hearing that it grew was devastating. Praying the new cocktail works and starts it in the other direction.

[Marylandmaniac]

Wow I am so sorry to hear this. Hopefully this new cocktail will work or you can try immunotherapy. Have you taken turkey tail mushroom? It is a supplement you can buy from Amazon. There are so many good reviews on it and NIH has done trials with it for breast cancer with good results. I take it every day. I am not sure if it is just chemo or if it is chemo plus my supplements but I have responded very well to chemo. I take 4 to 6 grams a day. NIH has shown up to 10 grams is not toxic. My doctor is okay with me taking it.

I wish I could give you a big hug. Sending a virtual hug to you.

Thanks for the hug Maryland, I will have to look into the turkey tail and talk to my onc. I currently don't take any supplements for fear of a reaction with my blood thinner. I really should take the time to research what I can take and what I can't. If anything I would think it would help my body rebound from the chemo better.

Let me know if you doctors approve it. Shoot I will send you a bottle if they okay it. My gift to you.
I take D3, turkey tail and cur cucumin BCM-95. These I take every day. I take some things when I do chemo - L glutamine for neuropathy. I read a guy's post on here about fasting during chemo. It made a lot of sense but I am not sure I could do it because I wear the pump for two days. 4 days of nothing but water would be torture for me.

[BeansMama]

Wow I am so sorry to hear this. Hopefully this new cocktail will work or you can try immunotherapy. Have you taken turkey tail mushroom? It is a supplement you can buy from Amazon. There are so many good reviews on it and NIH has done trials with it for breast cancer with good results. I take it every day. I am not sure if it is just chemo or if it is chemo plus my supplements but I have responded very well to chemo. I take 4 to 6 grams a day. NIH has shown up to 10 grams is not toxic. My doctor is okay with me taking it.

I wish I could give you a big hug. Sending a virtual hug to you.

Thanks for the hug Maryland, I will have to look into the turkey tail and talk to my onc. I currently don't take any supplements for fear of a reaction with my blood thinner. I really should take the time to research what I can take and what I can't. If anything I would think it would help my body rebound from the chemo better.

Let me know if you doctors approve it. Shoot I will send you a bottle if they okay it. My gift to you.
I take D3, turkey tail and cur cucumin BCM-95. These I take every day. I take some things when I do chemo - L glutamine for neuropathy. I read a guy's post on here about fasting during chemo. It made a lot of sense but I am not sure I could do it because I wear the pump for two days. 4 days of nothing but water would be torture for me.

Thank you for the info! I don't think I could fast either. Especially since the put me on dronabinol - the marinol pill. Kind of gives me the munchies, but I suppose that is better than being nauseous.

[Lee]

BeansMama,

(((HUGS))) So sorry to read this latest turn of event. Don't give up the hope and I hope your Dr is successful in another route that will kill those nasty cells to the next universe.

Thinking of you, all the best,

Lee

[mariane]

Beans, I am so sorry. I keep praying for you.
Good Luck!

[testing765]

My thoughts and prayers are with you.

[jortego128]

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.

[Willow.NZ]

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...

[Wonderfullymade]

[quote][/quote]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

[BeansMama]

BeansMama,

(((HUGS))) So sorry to read this latest turn of event. Don't give up the hope and I hope your Dr is successful in another route that will kill those nasty cells to the next universe.

Thinking of you, all the best,

Lee

Thank you Lee, I'm not going to stop fighting, I'm hoping this new cocktail makes it shrink so I can have the surgery. I'm still hoping for surgery.

[dudette]

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!

[Yolanda]

So sorry to hear it! It is so frustrating to not be able to just power through and leave it behind! Putting plans and life on hold yet another week, month, who knows? I hope for you this new treatment is a raving success!

[BeansMama]

Beans, I am so sorry. I keep praying for you.

I started chemo with FOLFIRINOX and got the 50% shrinkage after just 3 treatments. I wish you the best response ever. Walking helped me a lot surviving this tough chemo. I used to walk even with the 5FU pump. You will survive it. You are young and strong. There will be hard days. After my 4th FOLFINOX treatment I felt to tired to climb the stairs to my kids room to prepare clothes for them for the next school day but by the end of the chemo week I felt relatively back to my normal self.

Are you getting EMEND for your nausea? It helped me a lot.

With FOLFIRINOX you will need the regular Neupogen shots. I did Monday, Wednesday and Friday on the next week after chemo. It is very important to receive treatments regularly. No chemo breaks to get the best possible response so watch your WBC and platelets numbers carefully, please. I even checked my numbers on Friday before Monday chemo to be sure I will receive it every two weeks without any delay. No delays to get the resection.

I also ate eggs as I wrote you sometime ago. It helped keeping protein level in order and quickly rebounce after chemo. Dry prunes usually helped me to resolve my constipation. I had usually constipation during the first week and then run to the can.

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

Good Luck!

Thank you for the information Mariane!

I am getting Emend on infusion days, nausea has just been particularly bad for me. My onc wants me to do 7 Neupogen shots after the round so that is what i will do. My platelets are pretty low but I don't know how to get them back up.

[BeansMama]

My thoughts and prayers are with you.

Thank you.