Cole

Hello and so sorry you are having to go through this. Glad to report though that if indeed you are Lynch Syndrome positive, stage for stage outcomes are better than for those in the general population. Unfortunately, you are at very high risk for developing other gastric cancers as well as urinary tract cancers and annual screenings are your best chance of staying on top of things. My husband had stage IIIC colon cancer, right side of colon removed followed by 9 months of chemo before he was 50. He was genetically tested at that time but found to be negative. Six years later, right ureter cancer (a rare cancer hardly occurring in the general population but NOT so rare for people with Lynch). This resulted in removal of right ureter along with right kidney. Fortunately only Stage 1A and no chemo. Re-tested and this time, positive for MLH1 gene mutation, Lynch. Last year, developed mild heartburn, endoscope done, nothing found and heartburn went away. May this year, started up again, another endoscope and tumor found and staged at 2B, possibly 3A in stomach. He has had three chemo infusions and just completed surgery for removal of 2/3 of his stomach four days ago and is doing well. This will be followed by three more rounds of chemo. Please, be very, very proactive and advocate for yourself. It's not just the colon you have to worry about...it's the urinary tract and gastric system. Make sure they put you on an annual screening for all these tests for early detection. My favorite saying is "my husband may have Lynch Syndrome BUT Lynch Syndrome DOES NOT have my husband." Early detection is the key for survival for Lynch patients. Best of luck to you and please feel free to message me anytime you wish.

thanks for encouraging me to walk...i did that today, i walked to store instead of driving with my daughter, just for a few minutes, it felt great. thanks!!!!!!!

Hi Cole.... just was reading some answers to questions and agreed with an answer u posted about neuropathy! I also remembered u had posted on one of my questions- the "now what" one... im better today than when I posted last month! Gotta keep on going and not let the scary stuff take over as u said. I saw that u hv 3 small children- cant imagine going through all of this with little ones. You r a strong woman!! :-) I hv 3 grown girls... a blessing all three! I finished my chemo on April 30th- so im just behind you in all this! Wish u all the best! Prayers your way! Keep in touch if you can... we're all family now right!!

Best wishes to you in your healing! I appreciate your response to my question as I feel you really are in the place I am! It is hard to be a mom of young children (mine are 8 and almost 5) and not worry about the possibility of them losing you. I feel such pain thinking of how it would impact their lives ( and my husband too). It is comforting to know I am not alone in my worries! Thank you!

Hi Cole, you were one of the first people I started following and know you were ahead of my husband in treatments. So I hope you are coming to the end of your treatments soon? Just been catching up on your wall - somehow I missed some updates - and so sorry to hear your baby needed surgery too. I hope your baby is recovering well and that things are starting to look up for you. All best. xx

Thank you for your kind thoughts. I am sure you know being married to a marine. He is the best man but not a great patient. I wish you well too. I am so happy you are able to have a normal life. Your husband is right, take it easy. Best regards, Gracie

Hi Cole! So sorry this happened to you with a young baby. Hope you're keeping your spirits up. I'm just starting week 3 of chemo/radiation. It's going to be a long journey, but at stage 3A we have great odds in our favor!

Hugs, I know how hard it is to be in the hospital over a Holiday - I spent Rosh Hasahna (Jewish New Year) 2099 in the hospital spiking 103 and fighting an infection. Thanksgiving 1995 I was recuperating from my Nephrectomy, performed the day before and on a liquid diet.

Hope they let your family bring in dinner with all the trimmings and that you feel well enough to eat it.

Healing vibes and prayers.
Sue-Rae

Hi Cole,

Checking in to see how you are doing.

Hang in there. I am finishing up my last week of radiation and chemo after almost 5 wks and I have had issues upon issues. I am scheduled for surgery in December and then FolFox for 5 months and surgery again. It seems like such a long journey but coming to this website has given me such great support so you are at the right place. Kids definitely help keep you positive. Take it one day at a time. Best wishes for us all to kick this!!

Hi, and welcome, although I am so sorry you have to be here, especially with a new baby. Just wanted to pass along to you that am also a Stage IIIA, and just passed my 3 years from diagnosis and 2 years from final chemo & surgery. So far, all is well. As my surgeon put it "You are going to have a bad year." All things being equal, it was an unpleasant but manageable year. Take it in small bites - one chemo down, 5 to go - and you will find the time passes quickly. It seems like you have a great attitude...keep that going as best as you are able. Please feel free to ask ANY questions - we are here for you!

Wow a new baby congratulations and sorry in the same breathe - You R very young my heart goes out to you - Cole let me tell u we are not close in age I am in my 60's but I have gone this round twice - I was in the hospital 4 out of 6 times this second go round but the cancer is in remission - This site helps a lot u can ask questions and know what to expect --- it's the support of friends and family that keeps u going - everybody acts differently to the chemo - good luck sista - here if u need a friend - always hoping to give that support since I have had it twice one step at a time that's all we can do - hugs

Hi Cole,

Just read your profile. With the exception of our ages (I was diagnosed at 45), our stories are quite similar. I was diagnosed with Stage IIIA and I am now approaching my 2-year anniversary to being "unplugged" - my final chemo (12 rounds FOLFOX) and 3 years since my initial diagnosis. Hang in there. It isn't pleasant by any means, but it isn't terrible. You'll have good days and yucky days and honestly, my good days far outweighed my yucky days. Keep in touch and let me know how I can support you!

You R very young my heart goes out to you - Cole let me tell u we are not close in age but I have gone this round twice - is it great no but I did what my Doctor ordered work the programs they r the best ever my Docs - I was in the hospital 4 out of 6 times this second go round but the cancer is in remission - I hope u realize its a tough road but this site gives u the help u need so use it talk with people that have your problem - for me that helped a lot that way I could ask questions and know what to expect - does it feel sucky how bad this hurts yes - will tomorrow get better yes and no - it's the support of friends that keeps u going - everybody acts differently all bodies react differently some stronger then others - just know in the end we all have one goal shrink the cancer or remove it - if we have to feel this bad lord please make it worth it - we'll remission for me again - good luck buddy - here if u need a friend - always hoping to give that support since I have had a really rough time both times but here I am still working it one step at a time - hugs

Cole kelt me tell u we are not close in age but I have gone this round twice - is it great no but did what my Doctor order work yes they r the best ever - I was in the hospital 4 out of 6 times this second go round but the cancer is in remission - I hope u realize its a tough road but this site gives u the help u need so us it - does it feel sucky how bad this hurts yes - will tomorrow get better yes and no - it's the support of friends that keeps going - everybody acts differently some stronger then others - just know in the end we all have one goal shrink the cancer or remove it - if we have to feel this bad lord please make it worth it - we'll remission for me again - good luck buddy - here if u need a friend

Cole hang in there I would be the worst to say everything comes up roses but in the long haul the crap u go through has worked for me + 2 so I have had to endure this not once but twice but bother times god willing hit did what we prayed it put the Cancer on hold - to be honest it sucked the second time worst then the first but if I have to give it my opinion - yes second time sucked but it removed the cancer - just gave faith that everything u go through this the goal is and at the end please Cancer be gone - I have been blessed to have wonderful Doctors that don't sauger coat it - stage 4 both times but again stage 4 beat - dig deep and hold on tight it's hard but u can do it my friend - big hugs - I am there for u

You have a curable stage so it is ok for them to know that you are going through a challenge. It will be a year before you have your full energy back and there will be times when you need to ask them to go easy on you. In the long run it will be a good experience for them to take care of you and to see that people emerge from tough times intact. When they are older this will hold them in good stead. Just be sure they never get the sense that you are not sure this will all work out.
In my case I let my son drag me to the gym because I didn't want him to think I had given up on my overall health. Because of that I discovered that cardio exercise actually gets rid of the side effects of chemo for almost 24 hours. Later I did a literature search and learned that it also increases the cure rate.
I'm sorry you have to go through this with little ones. It will be ok and you will be fine. Good luck

Sending prayers for your and your family

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