Can someone help out JGwright? He needs answers....

LilChemoSmoker

Hello everyone, if you are like me, you probably read Jerry's post to read "Breast Cancer centers in Washington." He is actually looking for a cancer center in Washington and is flailing around for information. Please reply to his post here made today Oct. 29th entitled "Best Cancer Centers in Washington." THANKS!!

Hugs,
-Michelle

jgwright

Call me Jerry...
And YES, I need help. Although I have difficulty swallowing, as long as I take small bites, eat slowly, and chew it up good, I have no problem eating just about anything. Had pizza last night, spaghetti is great, and for breakfast, oatmeal, or eggs, homefries, and sausage, with great ease. Which doesn't sound typical. So I'm not "malnourished".

The PET scan shows a 5cm by 3.5cm tumor in the esophagus, some lymph involvement, some reactivity on the T-12 and T-9 vertebrae and possible left-side basal ganglial involvement. Going for a MRI sometime this coming week. But I've NEVER had an esophageal ultrasound.

So... Am I really Stage IV? Curious minds want to know...
--Jerry

LilChemoSmoker

jgwright said:

Call me Jerry...
And YES, I need help. Although I have difficulty swallowing, as long as I take small bites, eat slowly, and chew it up good, I have no problem eating just about anything. Had pizza last night, spaghetti is great, and for breakfast, oatmeal, or eggs, homefries, and sausage, with great ease. Which doesn't sound typical. So I'm not "malnourished".

The PET scan shows a 5cm by 3.5cm tumor in the esophagus, some lymph involvement, some reactivity on the T-12 and T-9 vertebrae and possible left-side basal ganglial involvement. Going for a MRI sometime this coming week. But I've NEVER had an esophageal ultrasound.

So... Am I really Stage IV? Curious minds want to know...
--Jerry

I'm not a doctor but....
Hi Jerry,

I am not a doctor, but I can share about my experiences. My husband was diagnosed in June of this year. A year before that he had began to have difficulty swallowing bread (his favorite food ever!) and needed a chaser sometimes to make it finish the journey down. He tolerated this as it progressed to a level of questioning he could no longer ignore in June of this year. Yet, even at this point, though he struggled 'at times' could also tolerate ANY kind of food, and for that matter, still does to this day without a stent, or a stretch. On initial exam by a GI he was told that it was probably a "shelf" of skin that a lot of men his age develop at the junction of the stomach, that simply needed a stretch to correct. He was scheduled for an endoscope and colonoscopy in the same day. He figured that since he was going in, might as well go all the way and have his first colon well-check. The doctor came in after his exam and said, well, your colon looks great and you got some big problems going on upstairs and if you hadn't have come in today we wouldn't have seen you in six months. That began the biggest roller coaster ride of our sixteen year marriage. His tumor was 5cm and had penetrated all four layers of the esophagus and had penetrated the mucosa lining. He also had 7 lymph nodes that showed hot on PET. Problem for my husband was that the metastasis to two of the nodes were outside the tumor region (one in front of the kidney and one paritoneal). With the vascular involvement of one around his heart, kidney and paritoneal zone he was inoperable and terminal, as radiation to these spots was not an option. His options were to take palliative chemo and rads to decrease the size of the originating tumor and extend life for two months possibly or have palliative pain management and keep his quality of life as long as possible. My husband chose to keep his health as long as possible, because he did not want to risk the side effects of treatment causing a less quality of life. My husband had no other involvement at the time and is 5 months forward and now has mets to the spine and hip bones. This disease moves fast and there are many factors that have to be taken into account before you definitely "know" you are stage IV.

Being that they haven't done an EUS (Endoscopic Ultrasound) I am confused as to how they may know the exact size of the tumor and it's progression through the walls of the esophagus (unless on endoscopy they were able to see the tumor on the inside through all layers). They would still need the EUS to know it's exact size. Have they told you if your tumor is HER2-nuetral/negative or if it is Her2+? This will tell what line of chemo you can have. Different chemo treatments available have different success rates.

Last and not least, if the hot spots in your spine and brain are indeed cancer then it has metastasized to "other" regions and would be considered Stage IVb. I would definitely get the 2nd opinion regardless, just to make sure they are reading your results the same. An EUS would be in order in my opinion.

I know that all this may be overwhelming, but in my opinion you are already behind the ball on this as it has been months since the onset of your symptoms and you will need a lot of answers going forward in order to make a right choice for you and your family. I don't envy your position right now as it is still so raw with us, having just been there 5 months ago. This is an aggressive cancer and is considered a "beast" around these halls. Regardless of your treatment options and the decisions you and your family will soon face, know that we here care and will be here with you as much as we can. This is a great family of people here that are ALL walking this walk of the "Beast" and there is much to be learned if you keep us posted on details and we respond with our own experiences.

Tell your wife that there is also a board here for caregivers on CSN as well as communicating in these halls as there is much for her to learn about this disease as well as gaining support for what she is also facing in this fight. It will take much communication and information for both of you to ride this roller-coaster and we understand here.

Hugs,
-Michelle

jgwright

LilChemoSmoker said:

I'm not a doctor but....
Hi Jerry,

I am not a doctor, but I can share about my experiences. My husband was diagnosed in June of this year. A year before that he had began to have difficulty swallowing bread (his favorite food ever!) and needed a chaser sometimes to make it finish the journey down. He tolerated this as it progressed to a level of questioning he could no longer ignore in June of this year. Yet, even at this point, though he struggled 'at times' could also tolerate ANY kind of food, and for that matter, still does to this day without a stent, or a stretch. On initial exam by a GI he was told that it was probably a "shelf" of skin that a lot of men his age develop at the junction of the stomach, that simply needed a stretch to correct. He was scheduled for an endoscope and colonoscopy in the same day. He figured that since he was going in, might as well go all the way and have his first colon well-check. The doctor came in after his exam and said, well, your colon looks great and you got some big problems going on upstairs and if you hadn't have come in today we wouldn't have seen you in six months. That began the biggest roller coaster ride of our sixteen year marriage. His tumor was 5cm and had penetrated all four layers of the esophagus and had penetrated the mucosa lining. He also had 7 lymph nodes that showed hot on PET. Problem for my husband was that the metastasis to two of the nodes were outside the tumor region (one in front of the kidney and one paritoneal). With the vascular involvement of one around his heart, kidney and paritoneal zone he was inoperable and terminal, as radiation to these spots was not an option. His options were to take palliative chemo and rads to decrease the size of the originating tumor and extend life for two months possibly or have palliative pain management and keep his quality of life as long as possible. My husband chose to keep his health as long as possible, because he did not want to risk the side effects of treatment causing a less quality of life. My husband had no other involvement at the time and is 5 months forward and now has mets to the spine and hip bones. This disease moves fast and there are many factors that have to be taken into account before you definitely "know" you are stage IV.

Being that they haven't done an EUS (Endoscopic Ultrasound) I am confused as to how they may know the exact size of the tumor and it's progression through the walls of the esophagus (unless on endoscopy they were able to see the tumor on the inside through all layers). They would still need the EUS to know it's exact size. Have they told you if your tumor is HER2-nuetral/negative or if it is Her2+? This will tell what line of chemo you can have. Different chemo treatments available have different success rates.

Last and not least, if the hot spots in your spine and brain are indeed cancer then it has metastasized to "other" regions and would be considered Stage IVb. I would definitely get the 2nd opinion regardless, just to make sure they are reading your results the same. An EUS would be in order in my opinion.

I know that all this may be overwhelming, but in my opinion you are already behind the ball on this as it has been months since the onset of your symptoms and you will need a lot of answers going forward in order to make a right choice for you and your family. I don't envy your position right now as it is still so raw with us, having just been there 5 months ago. This is an aggressive cancer and is considered a "beast" around these halls. Regardless of your treatment options and the decisions you and your family will soon face, know that we here care and will be here with you as much as we can. This is a great family of people here that are ALL walking this walk of the "Beast" and there is much to be learned if you keep us posted on details and we respond with our own experiences.

Tell your wife that there is also a board here for caregivers on CSN as well as communicating in these halls as there is much for her to learn about this disease as well as gaining support for what she is also facing in this fight. It will take much communication and information for both of you to ride this roller-coaster and we understand here.

Hugs,
-Michelle

No mention of HER2
The Doctor has NOT mentioned HER2 at all. The only reason I know ANYTHING about that is what I've read on this board. And although my insurance will cover treatment by CTCA, we also have the Fred Hutchinson Cancer Center at the U of W, considered one of the 11 best Oncology centers in the US. Calls to make on Monday.

The PET scan reads "Metabolically active focus in the left basal ganglia (1/244) no definite CT correlate." and "Right t12 vertebral body max SUV 6.6 and Right Posterior T9 max SUV 5.2".

Not happy...

Hugs to you as well.

--Jerry

megmacmd

LilChemoSmoker said:

I'm not a doctor but....
Hi Jerry,

I am not a doctor, but I can share about my experiences. My husband was diagnosed in June of this year. A year before that he had began to have difficulty swallowing bread (his favorite food ever!) and needed a chaser sometimes to make it finish the journey down. He tolerated this as it progressed to a level of questioning he could no longer ignore in June of this year. Yet, even at this point, though he struggled 'at times' could also tolerate ANY kind of food, and for that matter, still does to this day without a stent, or a stretch. On initial exam by a GI he was told that it was probably a "shelf" of skin that a lot of men his age develop at the junction of the stomach, that simply needed a stretch to correct. He was scheduled for an endoscope and colonoscopy in the same day. He figured that since he was going in, might as well go all the way and have his first colon well-check. The doctor came in after his exam and said, well, your colon looks great and you got some big problems going on upstairs and if you hadn't have come in today we wouldn't have seen you in six months. That began the biggest roller coaster ride of our sixteen year marriage. His tumor was 5cm and had penetrated all four layers of the esophagus and had penetrated the mucosa lining. He also had 7 lymph nodes that showed hot on PET. Problem for my husband was that the metastasis to two of the nodes were outside the tumor region (one in front of the kidney and one paritoneal). With the vascular involvement of one around his heart, kidney and paritoneal zone he was inoperable and terminal, as radiation to these spots was not an option. His options were to take palliative chemo and rads to decrease the size of the originating tumor and extend life for two months possibly or have palliative pain management and keep his quality of life as long as possible. My husband chose to keep his health as long as possible, because he did not want to risk the side effects of treatment causing a less quality of life. My husband had no other involvement at the time and is 5 months forward and now has mets to the spine and hip bones. This disease moves fast and there are many factors that have to be taken into account before you definitely "know" you are stage IV.

Being that they haven't done an EUS (Endoscopic Ultrasound) I am confused as to how they may know the exact size of the tumor and it's progression through the walls of the esophagus (unless on endoscopy they were able to see the tumor on the inside through all layers). They would still need the EUS to know it's exact size. Have they told you if your tumor is HER2-nuetral/negative or if it is Her2+? This will tell what line of chemo you can have. Different chemo treatments available have different success rates.

Last and not least, if the hot spots in your spine and brain are indeed cancer then it has metastasized to "other" regions and would be considered Stage IVb. I would definitely get the 2nd opinion regardless, just to make sure they are reading your results the same. An EUS would be in order in my opinion.

I know that all this may be overwhelming, but in my opinion you are already behind the ball on this as it has been months since the onset of your symptoms and you will need a lot of answers going forward in order to make a right choice for you and your family. I don't envy your position right now as it is still so raw with us, having just been there 5 months ago. This is an aggressive cancer and is considered a "beast" around these halls. Regardless of your treatment options and the decisions you and your family will soon face, know that we here care and will be here with you as much as we can. This is a great family of people here that are ALL walking this walk of the "Beast" and there is much to be learned if you keep us posted on details and we respond with our own experiences.

Tell your wife that there is also a board here for caregivers on CSN as well as communicating in these halls as there is much for her to learn about this disease as well as gaining support for what she is also facing in this fight. It will take much communication and information for both of you to ride this roller-coaster and we understand here.

Hugs,
-Michelle

You are soon target
I love reading your posts you 'all are so on track in my mind after losing my mom dad and sister to cancer QUALITY of life is where its atIm from the south your are so on target As a stage IV? no one really ever knows I have opted notto do any more chemo My goal as I stated before is to get my youngest child through college as his dad died suddenly of a brain aneursym 3 1/2 years ago after 40 year together and 30 years of marriage. I cant imagine how you feel about your 5 children as a pediatrician children are everything in life and I am sooo gald for you and your wife to have great children it will get her through .
my thoughts and prayers go out to you , Bone mets are terrible but my sistergot through with Fentynal patches and morphine my mom had terrible bone mets and the same for her she was not in much pain with the fentanynal patch and morphine she still played bridge and croquetee I hope for the best for you enjoy all the time you have with your beautiful children they will be your legacy and you are blessed to have that After my husband died the chidren really came together now they are facing my death they are such a support I will go to my eldest childs house in the end but we still have good times between the bad I dont tel them all the aches and pains they are young and happy and dont need to see the worse life will play out and they will get plenty of that Best of everyting for you and your family I think you are on the right track QUALITY rahter than dragging it out and everyone suffers and you are no longer you your family will be very beholden to you for your heroism in the face of death I do hope you get good pain relief that is paramount My best to your wonderful wife what a road she has to travel but she sounds like a remarkable woman and her chidren will be there.I got peripheral neuropathy form my chemo and my typing is difficult. But still can workthe best for you your on my prayers Meg mcintyre

chemosmoker

jgwright said:

No mention of HER2
The Doctor has NOT mentioned HER2 at all. The only reason I know ANYTHING about that is what I've read on this board. And although my insurance will cover treatment by CTCA, we also have the Fred Hutchinson Cancer Center at the U of W, considered one of the 11 best Oncology centers in the US. Calls to make on Monday.

The PET scan reads "Metabolically active focus in the left basal ganglia (1/244) no definite CT correlate." and "Right t12 vertebral body max SUV 6.6 and Right Posterior T9 max SUV 5.2".

Not happy...

Hugs to you as well.

--Jerry

CTCA VS your local cancer center....
As with my wife, who by the way IS incredible and wonderful (sorry I just can't help that), I am not a doctor, but....

I would cautiously approach CTCA from reading these boards.

I know NOTHING about them from ANY experience personally, but I DO know that they like to promise the world, and if you are stage IV (sounds like it) you do not want or have time for false hopes. Just my 2 cents.

With love,
Eric

chemosmoker

megmacmd said:

You are soon target
I love reading your posts you 'all are so on track in my mind after losing my mom dad and sister to cancer QUALITY of life is where its atIm from the south your are so on target As a stage IV? no one really ever knows I have opted notto do any more chemo My goal as I stated before is to get my youngest child through college as his dad died suddenly of a brain aneursym 3 1/2 years ago after 40 year together and 30 years of marriage. I cant imagine how you feel about your 5 children as a pediatrician children are everything in life and I am sooo gald for you and your wife to have great children it will get her through .
my thoughts and prayers go out to you , Bone mets are terrible but my sistergot through with Fentynal patches and morphine my mom had terrible bone mets and the same for her she was not in much pain with the fentanynal patch and morphine she still played bridge and croquetee I hope for the best for you enjoy all the time you have with your beautiful children they will be your legacy and you are blessed to have that After my husband died the chidren really came together now they are facing my death they are such a support I will go to my eldest childs house in the end but we still have good times between the bad I dont tel them all the aches and pains they are young and happy and dont need to see the worse life will play out and they will get plenty of that Best of everyting for you and your family I think you are on the right track QUALITY rahter than dragging it out and everyone suffers and you are no longer you your family will be very beholden to you for your heroism in the face of death I do hope you get good pain relief that is paramount My best to your wonderful wife what a road she has to travel but she sounds like a remarkable woman and her chidren will be there.I got peripheral neuropathy form my chemo and my typing is difficult. But still can workthe best for you your on my prayers Meg mcintyre

Fyntanyl and Morphine for METS
What stinks for me, and I sure hope is not the case for you or others, after reading Meg's post above, is that I get NO effect from Fyntanyl patches OR IV, and morphine causes me nausea, and does not seem to help the pain much compared to Oxycodones, at least not the pills. I am holding out hope that the IV morphine and liquid works very differently. Sorry not trying to hijack the post here, but anyone else have any experience similar to these with fyntanyl and morphine as mine?
Eric

NikiMo

chemosmoker said:

CTCA VS your local cancer center....
As with my wife, who by the way IS incredible and wonderful (sorry I just can't help that), I am not a doctor, but....

I would cautiously approach CTCA from reading these boards.

I know NOTHING about them from ANY experience personally, but I DO know that they like to promise the world, and if you are stage IV (sounds like it) you do not want or have time for false hopes. Just my 2 cents.

With love,
Eric

CTCA
Be careful with CTCA. I know of a woman from another board whose husband was stage 4 and went to CTCA. They gave him hope, treated him aggressively, but it did not cure him. The most concerning part is that because they were treated at CTCA other cancer centers denied him from clinical trials...not sure why. I would just say be cautious. We live in Philadelphia and we have one of the three CTCAs right here. I had friends ask if we were going to go there for treatment, it just didn't feel right...we went to an NCI designated cancer center instead.

Niki

jgwright

chemosmoker said:

Fyntanyl and Morphine for METS
What stinks for me, and I sure hope is not the case for you or others, after reading Meg's post above, is that I get NO effect from Fyntanyl patches OR IV, and morphine causes me nausea, and does not seem to help the pain much compared to Oxycodones, at least not the pills. I am holding out hope that the IV morphine and liquid works very differently. Sorry not trying to hijack the post here, but anyone else have any experience similar to these with fyntanyl and morphine as mine?
Eric

Differences
Hey, Eric...
Hijack away. All the information we can find needs to be shared. In the three days I've been here I've learned more about the things I NEED TO KNOW(!!!)than in the oncologist's office.

But our metabolisms and responses are all different, and we seem to respond differently to different drugs and treatments. So, I'm curious too.

-Your brother in fighting the beast... (Bare is the back without brother behind it)

--Jerry

jgwright

chemosmoker said:

CTCA VS your local cancer center....
As with my wife, who by the way IS incredible and wonderful (sorry I just can't help that), I am not a doctor, but....

I would cautiously approach CTCA from reading these boards.

I know NOTHING about them from ANY experience personally, but I DO know that they like to promise the world, and if you are stage IV (sounds like it) you do not want or have time for false hopes. Just my 2 cents.

With love,
Eric

Them Guys
CTCA is NOT an option. Although they try to do much of the right thing, their primary purpose is to make a lot of money, and so if the patients want "the woo factor", that's what they get. Naturopathic oncology... Whatever that is...

There is a lot of negative info in re: CTCA. Much from people who once worked there and say they left due to ethical concerns.

--Jerry

bingbing2009

chemosmoker said:

Fyntanyl and Morphine for METS
What stinks for me, and I sure hope is not the case for you or others, after reading Meg's post above, is that I get NO effect from Fyntanyl patches OR IV, and morphine causes me nausea, and does not seem to help the pain much compared to Oxycodones, at least not the pills. I am holding out hope that the IV morphine and liquid works very differently. Sorry not trying to hijack the post here, but anyone else have any experience similar to these with fyntanyl and morphine as mine?
Eric

Fentanyl Patch
My experience was really quite wonderful with the Fentanyl patch. I was on it while on radiation/chemo treatments. I was told I would have a lot of pain while undergoing the radiation, but the Fentanyl patch worked wonders for me, ONCE I learned where to place it. Believe it or not, it was all in the placement. I placed it on the back of my upper arm--when I tried it in the other recommended places, it did little for me. I was also on the patch again after my IL surgery. Since I almost died from an overdose of morphine while in the hospital, morphine was not a good option for me. So the patch worked wonders. I will admit that I had horrible withdrawal symptoms when coming off the patch, though. My poor hubby thought he was married to some kind of alien or something. lol

Melinda

jim2011

jgwright said:

Call me Jerry...
And YES, I need help. Although I have difficulty swallowing, as long as I take small bites, eat slowly, and chew it up good, I have no problem eating just about anything. Had pizza last night, spaghetti is great, and for breakfast, oatmeal, or eggs, homefries, and sausage, with great ease. Which doesn't sound typical. So I'm not "malnourished".

The PET scan shows a 5cm by 3.5cm tumor in the esophagus, some lymph involvement, some reactivity on the T-12 and T-9 vertebrae and possible left-side basal ganglial involvement. Going for a MRI sometime this coming week. But I've NEVER had an esophageal ultrasound.

So... Am I really Stage IV? Curious minds want to know...
--Jerry

III or IV ?
you will find out this week if you get the MRI and the ultrasound. for some un-known reason i have developed some kind of milk allergy after chemo/radiation & surgery. i miss a messy cheeze pizza most of all. even though you have compensated your swallowing difficulty by chewing better...did you lose a bunch of weight anyway?? how about pain issues??
Jim

jgwright

jim2011 said:

III or IV ?
you will find out this week if you get the MRI and the ultrasound. for some un-known reason i have developed some kind of milk allergy after chemo/radiation & surgery. i miss a messy cheeze pizza most of all. even though you have compensated your swallowing difficulty by chewing better...did you lose a bunch of weight anyway?? how about pain issues??
Jim

Pain?
So far there hasn't been any pain. Fortunate? Absolutely. I have diabetes, and so I was on something called Victoza for the past year. A side effect is that it slows the movement of food out of the stomach, and so you fill up faster and can't eat as much, and so... You lose weight. Slowly. Over about 8 months I lost about 25 pounds. Now thanks to not being able to swallow properly, I've dumped over 30 pounds but in 4 months. I still weigh 245lbs, so I have some weight to go. I wanted to reach 180 or 190, but not this way!!!

Unknown

jgwright said:

Pain?
So far there hasn't been any pain. Fortunate? Absolutely. I have diabetes, and so I was on something called Victoza for the past year. A side effect is that it slows the movement of food out of the stomach, and so you fill up faster and can't eat as much, and so... You lose weight. Slowly. Over about 8 months I lost about 25 pounds. Now thanks to not being able to swallow properly, I've dumped over 30 pounds but in 4 months. I still weigh 245lbs, so I have some weight to go. I wanted to reach 180 or 190, but not this way!!!

This comment has been removed by the Moderator

jgwright

unknown said:

This comment has been removed by the Moderator

The Flood
Dear William (and Sherri) thanks for an absolute FLOOD of information. It will take me some time to digest and understand it all. I'm going for a second opinion this week, over the mountains to Seattle, probably the Fred Hutchinson Cancer Center at the UofW.

--Jerry

LilChemoSmoker

jgwright said:

The Flood
Dear William (and Sherri) thanks for an absolute FLOOD of information. It will take me some time to digest and understand it all. I'm going for a second opinion this week, over the mountains to Seattle, probably the Fred Hutchinson Cancer Center at the UofW.

--Jerry

Glad to hear!
Jerry,

Very glad to hear you are going to get that second opinion. I will be on pins and needles awaiting your results. Prayers will be flying your way for better news than you have already had.

Hugs,
-Michelle