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Folfox7 2 down 10 to go

Tom M.
Posts: 174
Joined: May 2019

So far I have been blessed I guess. I get tired at the clinic during my treatment and a little tired for the 2days with my bag buddy. Other than that the only side effect I get is the prickly feeling on fingertips and throth. Blood counts remain good. All in all I feel pretty good. I am attacking this all with a very positive attitude. Faith, hope, and trust. I will update after each treatment. 

Tom M.
Posts: 174
Joined: May 2019

Thanks for your well wishes everyone. The upcoming pet scan is both exciting and scaredy at the same time. But it will tell the tale of where I am at. I feel really good about everything and I also feel good physically. Hoping for a good outcome.

Capox Dude's picture
Capox Dude
Posts: 77
Joined: May 2019

Just keep doing what you are doing, and maintain that great attitude.

Tom M.
Posts: 174
Joined: May 2019

Treatment 11 complete. Went well, as usual the neuropathy right after which will go away before my 12th treatment. Been lucky there I guess. My pet scan is moved up to October 5th. Hoping for a good one. Cea was still 1.8. Will let you all know how pet scan goes.

Trubrit's picture
Trubrit
Posts: 5424
Joined: Jan 2013

Less time to think about it. 

Sounds like all is going well, and than makes me happy. 

Tru

Tom M.
Posts: 174
Joined: May 2019

Thanks Tru. I feel really good. A little tired at times but I'm still getting things done around the house. The nurses say that I did very well on the dreaded folfox7. The pet scan will tell us how well. No matter what I plan to be a long term survivor. Being positive is a big part of the battle as you well know.

Annabelle41415's picture
Annabelle41415
Posts: 6694
Joined: Feb 2009

So glad this treatment has been going good for you as far as side effects.  Wishing you well on the upcoming scan and feel that everything is going to come out just fine.  You have a great attitude and it seems like you just started.  Thank you for the update and look forward to the news of your scan results.

Kim

Trubrit's picture
Trubrit
Posts: 5424
Joined: Jan 2013

I hope the scan itself was fine. Its the waiting for results that get to you. 

I was thinking of you, Saturday. 

Tru

Tom M.
Posts: 174
Joined: May 2019

To my dear friends, I saw the new oncologist this morning before my final treatment. Pet scan looked good she said, I responded well to the treatments. Liver might need some work yet. Showed improvement but she wants me to talk to a surgeon to remove what's left there. All other organs are free and clear. Nothing in nodes. Looking forward to building my blood counts back up. They are in normal range by lab standards but a little low for my normal readings. Cea continues to remain low at 1.9. I want to thank all of you for your words of encouragement. It really helps in keeping a good attitude towards a journey like this. I pray for all of you every day. I will keep you all up to date with things. I WILL be a long term survivor.    Love you all, Tom

 

Trubrit's picture
Trubrit
Posts: 5424
Joined: Jan 2013

Great news Tom.

You have the right attitude all the way, and you will go far with it. 

I hope, if they have to do surgery, that it is an ablation, because that is less invasive and an easier recovery. 

I look forward always to your positive posts. 

Tru

Tom M.
Posts: 174
Joined: May 2019

Well my friends here is my update. I saw the oncologist today and she has decided to keep me on chemo up until surgery. The toned down version. FU5 no avastin. I see the oncology surgeon this coming Monday. I asked about not seeing anything on the PET scan on liver and she told me the tumors drunk but still have to be cut off the liver. Blood work remains good. Cea is at 1.7.  Any thoughts out there?      Thanks. Tom

myAZmountain
Posts: 399
Joined: Apr 2018

Or still an infusion? I have lung mets so not well versed with liver treatment but know many here have had great success with chemo directly infused into liver (HAI??) are you a candidate for that? So the liver lesions no longer light up on PET and continued normal CEA are all great signs. My personal beief is that surgical removal when possible is best. Hope things go well !

Tom M.
Posts: 174
Joined: May 2019

I know that the oncologist is going for removal by surgery. That is the best way. I understand her reasoning for the continued treatments. It is a scaled down version of what I was doing, which I handled very well. I guess I will know a lot more by Monday afternoon after I speak to the surgeon. At any rate I said in the beginning that I will do what the doctor's told me. I intend on being a long term survivor. I will post again when I have more information from the surgeon.

Annabelle41415's picture
Annabelle41415
Posts: 6694
Joined: Feb 2009

It sounds like you have responded very well to treatment and the continuous is until they can get it all through surgery.  The best way is to just "cut it out" and "get it out".  You still remain with that high and positive attitude which is good.  Wishing you the best of luck on your appointment on Monday.  Congratulations to making it through all those scheduled treatments.

Kim

Tom M.
Posts: 174
Joined: May 2019

Oncology surgeon said that lesions that were on my first pet scan are not visible on my latest one. She ordered a CT scan of the liver. November 13th. I'm Stoll on the chemo without the avastin. Didn't miss a cycle. I think the oncologist is just playing it safe. Any tips for my mouth. It hurts a lot. Didn't have that with my first 12 treatments. Other than that everything is good.   Thanks,  Tom

abita's picture
abita
Posts: 1014
Joined: Dec 2017

What is she expecting to see on a CT that isn't picked up on a pet scan?

Tom M.
Posts: 174
Joined: May 2019

I don't know. I guess she's just making sure. There were 5 lesions there back in March after my colon resection. After 12 treatments of folfox7 and a rescan nothing. Sounds good to me. I go day to day. Only way to deal with all of this.

Annabelle41415's picture
Annabelle41415
Posts: 6694
Joined: Feb 2009

Mine gave me "miracle mouthwash" and it helped a lot.  My sores weren't really as bad as some get, but enough to make it difficult to eat certain foods.  Miracle mouthwash isn't really a prescription (according to my doctor), but something that pharmacist knows how to make.  Glad to hear that spots seem to have disappeared on this last scan.  Good luck on the CT scan coming up.  Hope you get some relief for that mouth.  Please ask your doctor their recommendation also.  Some people swear by the salt water swish as well.

Kim

Tom M.
Posts: 174
Joined: May 2019

Thanks Kim, got some miracle mouthwash at drug store in town. Relief after one dose. Looking forward to emptying the bottle. I will post again after ct scan results.   

Heather MM
Posts: 5
Joined: Nov 2019

I used a q-tip and would hold the numbing solution to them. That way I didn't make my whole mouth numb. I was worried about accidentally biting myself. I wish I had gotten the solution earlier in treatment it was a real game changer.

Tom M.
Posts: 174
Joined: May 2019

That's a good idea too Heather. Thanks.

Annabelle41415's picture
Annabelle41415
Posts: 6694
Joined: Feb 2009

So glad that you got some and it gave you relief that fast.  Keep using it as long as you are having problems.  Wishing the doctors would tell the patients about it before we have to ask.  That is why this board is so important - we can share so much information.

Kim

Tom M.
Posts: 174
Joined: May 2019

Still waiting to hear from liver surgeon. CT scan showed 3 10mm lesions on right lobe. So 2 are gone and remaining 3 got smaller. Blood work remains good and cea is staying low. Feeling good all around will tell more when I find out.

Tom M.
Posts: 174
Joined: May 2019

Well I guess today was my last chemo day for awhile. Laparoscopic liver resection is set for 1-7-2020. Has anyone had this done?

beaumontdave's picture
beaumontdave
Posts: 1135
Joined: Aug 2013

Has got to be better then my liver surgeries. A foot down and a foot to the right really leaves a big thing to heal up, not to mention the cutting of major muscle nerves that won't be healing back. It also lead to major hernia surgery after treatment. The onc/surgeon said after that had he known the exact situation with the mets, he wouldn't have had to "go big". Cold comfort, but hey, I'm here and clear over five years later, so I'm not complaining. I hope the same for you, Tom, that you too get to this point where it's all hazy memories..............................................................Dave

Tom M.
Posts: 174
Joined: May 2019

Thank you Dave. God bless.

Tom M.
Posts: 174
Joined: May 2019

Nothing??????

Trubrit's picture
Trubrit
Posts: 5424
Joined: Jan 2013

I think I've heard of others having laparascopic surgery, not sure if it was colon though; maybe liver. 

Hopefulyl this will bump your thread to the top, and folks will flock to answer. 

You're on my calendar for the 7th.

Enjoy your Christmas or holiday season - whatever its called now. 

Tru

Melanie67's picture
Melanie67
Posts: 25
Joined: Jan 2019

Hi Tom. Mine was open resection with colon and liver done at the same time So I don't really have an answer for you. But I will keep you in my thoughts and prayers. 

Tom M.
Posts: 174
Joined: May 2019

Sometimes I tend to over think things. I am not in control. Thanks for your well wishes. Just had blood work again. All looks good, cea is at 1.6. It has remained below 2 for a long time now. Chemo is off in preparation of having surgery in January. I guess I'm letting the being put to sleep thing get to me. I know all will be okay. I like the oncology surgeon a lot. I know she will do a great job. I will keep you all up to date. Have a very blessed Christmas and happy and healthy New Year's.

SnapDragon2's picture
SnapDragon2
Posts: 516
Joined: Nov 2019

Merry Christmas to you and your family, Tom!  I'll be thinking about you in Jan.  I am also having surgery in Jan (7th).

Tom M.
Posts: 174
Joined: May 2019

Surgery date now 14January and pre op testing is on the 31st of December. Surgeon says she's confident she will get it all. I feel good about the whole thing. Looking forward to being a long term survivor. February 14 will be my 1 year anniversary of my diagnosis. Good luck to you Snap Dragon2. You will do fine.

beaumontdave's picture
beaumontdave
Posts: 1135
Joined: Aug 2013

If you have a surgeon speaking that confidently, you're in good shape for this gig. Mine was a stone wall, not much warmth or encouragement. Best part comes when you wake and know that it's done and all you have to do is heal up and go forward. Merry Christmas and Godspeed on this procedure and your recovery.....................................................Dave

Tom M.
Posts: 174
Joined: May 2019

I feel really good about the whole thing Dave. I have since day one. I'm not backing down to anything. Thanks for your support.

Trubrit's picture
Trubrit
Posts: 5424
Joined: Jan 2013

I have bumped you over a week on my calendar. 

I am wishing you a Happy New year. 

Tru

Tom M.
Posts: 174
Joined: May 2019

Thanks Tru. Always love hearing from you.

Tom M.
Posts: 174
Joined: May 2019

Merry Christmas to all my brothers and sisters on this site. God be with us all as we March on.

Tom M.
Posts: 174
Joined: May 2019

Tru or Kim, I haven't seen JanJan on here lately.

Trubrit's picture
Trubrit
Posts: 5424
Joined: Jan 2013

Sadly our dear Jan passed away in September. 

She fought well, and while our hearts are broken, we can be assured that she did not lose any battle, but moved on. 

May we all have her strengh. She suffered more than most, and bullied on until the end. 

Here is the link we posted about her passing JanJan.

Take heart! She would not want any of us discouraged.

Tru 

Tom M.
Posts: 174
Joined: May 2019

I'm so saddened to hear this. May she rest in peace. I will remember her and her family in my prayers. God rest her soul.

Steelkiwi686's picture
Steelkiwi686
Posts: 67
Joined: May 2019

Hi Tom M

Just had to drop a note saying you are often in my thoughts and I am cheering you on from the sideline, along with many others. 
Your strength and determination during this journey is inspiring.

Looking forward to hearing updates once surgery is behind you.

Steel

Tom M.
Posts: 174
Joined: May 2019

Thanks Steel, we're all in this together, attitude is paramount. I'll post after the liver surgery one week from today.

Capox Dude's picture
Capox Dude
Posts: 77
Joined: May 2019

I will be at MD Anderson meeting with my surgeon to see if I am going to follow you with lap liver mets surgery.   Soooooooo........I'll race you to NED buddy! Cool

Tom M.
Posts: 174
Joined: May 2019

Sounds good to me.

AnneO1965's picture
AnneO1965
Posts: 179
Joined: May 2019

I wish you much luck on your surgeries... I'll keep you in my prayers.

Tom M.
Posts: 174
Joined: May 2019

Thank you Anne. Prayers are always welcome.

Tom M.
Posts: 174
Joined: May 2019

Well my friends January 14th has come and passed. When they had the scope in there it seems a couple of lesions were in an area that were hard to get at on the back of the liver. To make a long story short I will go back on some chemo and have to have a more aggressive surgery at a later date. Yes I was disappointed however I feel really good therefore I refuse to get down. I trust in my doctors. My faith is strong as I continue to move forward in a positive direction with it all. Any input on this is most welcome. When I know more, you all will know more.  Tom

Tom M.
Posts: 174
Joined: May 2019

I forgot to mention, she also took a biopsy.

Trubrit's picture
Trubrit
Posts: 5424
Joined: Jan 2013

to hear that you are feeling well.

Sorry about the stubborn leisons and the ongoing chemo. But, you know we've all beent here and will be with you as you move forward. 

Take good care as you heal. It is easy to overdo it too early. 

Tru

Tom M.
Posts: 174
Joined: May 2019

I have a follow-up visit with the surgeon on the 28th. I'm writing down questions for that visit. The laparoscopic diagnosis gave her a more detailed look as to my situation. She mentioned being opened up with a combination of cutting and ablation for the next procedure. I'm learning so much through all this. Attitude, attitude, attitude. I'm in this to win it.

Trubrit's picture
Trubrit
Posts: 5424
Joined: Jan 2013

I had an ablation - probably told you that before - and it was a doddle.  Tiny incisions as opposed to the huge incision our resection friends have had.  The only problem I had after about three days of mild discomfort, was remembering that I had had liver surgery, and not doing too much.  

I hope that ablation is on the table for you. 

And yes, attitude is HUGE and you've got it. 

Tru

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