My mom has stage IIIb

beckiz

I have been following stories on here for a couple months now and thought this may be a great place for advice. My Mom is almost 59 and was diagnosed with EC Stage IIIb T3 N2 MO squoamos cell in March. Since then we went to the Mayo Clinic in Rochester MN where she had several tests. Her final PET scan showed her tumor was 10cm large and was located 10cm down and they said it was in 6 nodes. After meeting with the thorasic surgeon we were told she was not a candidate for surgery due to the location of it. He said there would be a slight possibility it would be an option if the chemo and radiation shrunk it alot.
Moms first symptoms started in Dec 09 having heartburn and then swallowing issues in January. In March she started 5 1/2 weeks radiation with 2 rounds of chemo each lasting 4 days. She left Mayo 2 weeks ago and has been pretty sick from the chemo and ended up w/ a blood transfusion in the local hospital (which worked w/ Mayo dr's). Her next steps are to go to Sioux Falls, SD on Monday to meet with a chemo dr so she can do 2 more rounds of chemo. One will start the end of May and the other the end of June. Mayo dr's said that she would have another PET scan towards the end of June to see if the tumor shrunk, etc...
Her Mayo radiation Dr told her she has a 1 in 5 chance or 10-15% chance of survival?? But yet I've read some great survival stories.
Now that she has been home her bad heartburn has come back and alot the the excess saliva crap that she had prior to treatment. Anyone know what this would mean??
This a great place for families going through this. Mom stayed at the Sara Schulze ACS house while in Rochester, wonderful place. I had never heard of this cancer until it struck our family. Any advice anyone has would be great.

Donna70

just a word of hope
Hi,
I was stage III with lymph node involvement and it was squamous about the same place down but my tumor was just 4 cms. Chemo and radiation destroyed it before my surgery, they said nothing was left of the tumor so though our sizes are different maybe your mom will have good results. The chemo is rough, I wound up with 3 pts of blood after my last chemo. I did have a positive node after surgery so had clean up chemo. About the heartburn ask your mom's dr to prescribe something for the heartburn, my gi dr gave me a liquid Zantac Rx and I take it before bedtime, no reflux or heartburn. About the saliva problem, think it is a normal thing but maybe someone else can help you. I would try every option they give you, and pray like the dickens that the tumor shrinks so she can have surgery. There are Stage IV survivors out here. Maybe someone can help with more suggestions. Stay strong!! I will keep you and your Mom in my prayers.
Donna70

beckiz

Donna70 said:

just a word of hope
Hi,
I was stage III with lymph node involvement and it was squamous about the same place down but my tumor was just 4 cms. Chemo and radiation destroyed it before my surgery, they said nothing was left of the tumor so though our sizes are different maybe your mom will have good results. The chemo is rough, I wound up with 3 pts of blood after my last chemo. I did have a positive node after surgery so had clean up chemo. About the heartburn ask your mom's dr to prescribe something for the heartburn, my gi dr gave me a liquid Zantac Rx and I take it before bedtime, no reflux or heartburn. About the saliva problem, think it is a normal thing but maybe someone else can help you. I would try every option they give you, and pray like the dickens that the tumor shrinks so she can have surgery. There are Stage IV survivors out here. Maybe someone can help with more suggestions. Stay strong!! I will keep you and your Mom in my prayers.
Donna70

Thanks so much. I am glad
Thanks so much. I am glad to hear that your situation turned out postively. Yes, the heartburn went away once she started treatment and now that she has been off for 2 weeks it came back. I will mention to her the liquid form as these local dr's try and give her pills and she still has a tough time getting some pills down. Thanks for the prayers, they are a powerful thing.

Tina Blondek

Welcome to You and Mom
Hi Beckiz,
Welcome to our family of ec survivors and fighters. I was a caregiver to my dad who beat ec cancer, and passed away in March due to mets to his liver. Your mom has as much chance of survival as do all of the people here. I heard once someone say, cancer is a disease, not a life sentence. How true is that? Just take this journey one hour at a time. Ask many questions, and get the answers. Start a journal. If you or mom are not happy with what the drs say, get a second opinion. That is always recommended. As far as her heartburn coming back, I would check with her dr. and see if they can prescribe a liquid form of acid reflux med. I think that the excess saliva is a normal response. Again, mention this to the dr. You and mom have to have a very close relationship with your drs. and nurses. I had my dad's drs cell phone #, and did call it a few times. There is also a great discussion board here for caregivers. Prayers will be being said for both of you daily. What are your names? Keep in touch. Do not give up, until there are no other places to go to find and get answers!
Tina

beckiz

Tina Blondek said:

Welcome to You and Mom
Hi Beckiz,
Welcome to our family of ec survivors and fighters. I was a caregiver to my dad who beat ec cancer, and passed away in March due to mets to his liver. Your mom has as much chance of survival as do all of the people here. I heard once someone say, cancer is a disease, not a life sentence. How true is that? Just take this journey one hour at a time. Ask many questions, and get the answers. Start a journal. If you or mom are not happy with what the drs say, get a second opinion. That is always recommended. As far as her heartburn coming back, I would check with her dr. and see if they can prescribe a liquid form of acid reflux med. I think that the excess saliva is a normal response. Again, mention this to the dr. You and mom have to have a very close relationship with your drs. and nurses. I had my dad's drs cell phone #, and did call it a few times. There is also a great discussion board here for caregivers. Prayers will be being said for both of you daily. What are your names? Keep in touch. Do not give up, until there are no other places to go to find and get answers!
Tina

Thank you all for your
Thank you all for your support and the wonderful information. My Mom's name is Betty and mine is Becki. We went to a new chemo Dr today in Sioux Falls, SD and he was so positive. He said over half of his patients have survived long term, it was good to hear that. He said squamos stays more localized so again hope that is true. Her lymph nodes in her neck were no longer swollen so I think that is a good sign. Mom starts chemo, round 3 next Monday. She is doing 5FU and dont' recall the name of the other one right now. Then she will have round 4 in June and then a PET scan...so the waiting game.
William when you mentioned the misdiagnosis part I have heard that also as we know of someone in our small town that was told Stage 2 at Mayo and then during surgery they found out it was Stage 4. I'm hoping that's not the case as Mom overall has stayed pretty healthy. I understand it is a hard cancer to stage.
This last round of chemo got her down but she is really a trooper overall. We continue to think positive but ever since the dr told her the statistics it makes it much harder to stay that way. But our family told each other that we will not "go there" as we did when she was first diagnosed and there's no sense in it. Today her new Dr was great so we are happy to have him!! Thanks again everyone.

Betty in Vegas

beckiz said:

Thank you all for your
Thank you all for your support and the wonderful information. My Mom's name is Betty and mine is Becki. We went to a new chemo Dr today in Sioux Falls, SD and he was so positive. He said over half of his patients have survived long term, it was good to hear that. He said squamos stays more localized so again hope that is true. Her lymph nodes in her neck were no longer swollen so I think that is a good sign. Mom starts chemo, round 3 next Monday. She is doing 5FU and dont' recall the name of the other one right now. Then she will have round 4 in June and then a PET scan...so the waiting game.
William when you mentioned the misdiagnosis part I have heard that also as we know of someone in our small town that was told Stage 2 at Mayo and then during surgery they found out it was Stage 4. I'm hoping that's not the case as Mom overall has stayed pretty healthy. I understand it is a hard cancer to stage.
This last round of chemo got her down but she is really a trooper overall. We continue to think positive but ever since the dr told her the statistics it makes it much harder to stay that way. But our family told each other that we will not "go there" as we did when she was first diagnosed and there's no sense in it. Today her new Dr was great so we are happy to have him!! Thanks again everyone.

Oh for heaven's sakes
I hate statistics. When Layne was first diagnosed we heard them all. And someone, a kind angel named Jimmy, told me "statistics are for groups, not for individuals. Every individual is different. You are a statistic of ONE." And you know what, loved that so much, I made a tee shirt for it haha.

Layne wears that one a LOT.

So, you don't listen, and you tell her to fight ...that there is only one person who says when her days are over on earth and that is God. Until he says "come home" she is here...I know several stage IV survivors who are 5-7 years out.

Having great family support is a HUGE thing and I think that your mom has a lot going for her.

Having good support from those who have walked the walk is also very important. I hope that you will come here often. These folks are my second family.

beckiz

Betty in Vegas said:

Oh for heaven's sakes
I hate statistics. When Layne was first diagnosed we heard them all. And someone, a kind angel named Jimmy, told me "statistics are for groups, not for individuals. Every individual is different. You are a statistic of ONE." And you know what, loved that so much, I made a tee shirt for it haha.

Layne wears that one a LOT.

So, you don't listen, and you tell her to fight ...that there is only one person who says when her days are over on earth and that is God. Until he says "come home" she is here...I know several stage IV survivors who are 5-7 years out.

Having great family support is a HUGE thing and I think that your mom has a lot going for her.

Having good support from those who have walked the walk is also very important. I hope that you will come here often. These folks are my second family.

Thanks Betty in Vegas, I
Thanks Betty in Vegas, I completely agree with your words on statistics. They should never throw that out there as initially when we found out I went on line and searched this cancer and was shaken by what you read AND THEN I found this site which is so supportive and is real.

Unknown

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stephendconley

bad heartburn
i was not long ago diagnosed with the same cancer and stage as your mom. i recently finished chemo and radiation therapy and am waiting at home for pet scan to happen and surgery scheduled. I too have noticed a rather sharp incerease in heartburn symptoms since completeing treatment. i was told that this is due to the radiation shrinking, killing, the tumor and basically buring my throat. and now that the treatment has ended that my esophageal is trying to repair its self with new healthy growth which is very sensitive to anything i eat....even oatmeal or pudding. I was prescibed something called "magic mouthwash" which does seem to help with the pain of eating if i swallow some right before i eat. i have also found that the most comfortable way to sleep is upright in my lazyboy. Helps keep the acids in my stomach i guess. hope this helps a little. god bless you

Daisylin

stephendconley said:

bad heartburn
i was not long ago diagnosed with the same cancer and stage as your mom. i recently finished chemo and radiation therapy and am waiting at home for pet scan to happen and surgery scheduled. I too have noticed a rather sharp incerease in heartburn symptoms since completeing treatment. i was told that this is due to the radiation shrinking, killing, the tumor and basically buring my throat. and now that the treatment has ended that my esophageal is trying to repair its self with new healthy growth which is very sensitive to anything i eat....even oatmeal or pudding. I was prescibed something called "magic mouthwash" which does seem to help with the pain of eating if i swallow some right before i eat. i have also found that the most comfortable way to sleep is upright in my lazyboy. Helps keep the acids in my stomach i guess. hope this helps a little. god bless you

Hi and welcome,
just wanted to welcome you to this site. This is a great resource for you, and hope you are able to find help, encouragement and answers here. There are many survivors posting here, and I'm sure would love to gain knowledge from your experiences. They can also give you advice and hints to help you through your upcoming surgery.

You may wish to post a separate note introducing yourself. The one that you have replied to is fairly old, and the person that you are replying to no longer posts here, for whatever reasons.

I'm glad to hear that you have found some tricks to help you maintain your eating and sleeping.
be well,
Chantal

Heeran

Mayo Clinic
Hi,
My mom has also been diagnosed with the squamous cell and we're still in the process for staging. I'm trying to do all the research I can right now to put together a good team and I keep coming across the Mayo Clinic. What was your experience with them. In Omaha, we have the Creighton University Esophageal Center and the head doctor there perform 30-40 esophagectomies a year. Trying to determine if we should look into the Mayo Center and risk the discomforts of travel. But then again, I keep hearing Dr. James D. Luketich's name over and over again.