Father in Law, new Dx of Stage III or IV
Looking for words of wisdom from those who have been down similar roads. I work in medicine myself but not in this area.
Thank you.
Comments
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Welcome and wish you didn't have to be here too...
Welcome to the boards, pjlee123.
Wish you DIDN'T have to be here, but glad you found the boards and joined none-the-less.
I am stage IVb diagnosed with adenocarcinoma at the gastroesophageal junction. No history of GERD. No heartburn or reflux to speak of. CT shows multiple clustered concerning lymph nodes just below the diaphragm around the aorta / celiac arteries. I had other areas light up as well, but couldn't help notice the similarities...Sound familiar? Mine has spread by the time we got the LNA and final PET to too many nodes and areas to do anything but chemo. Radiation not an option other than to my esophagus to swallow better, which I haven't done and still don't need, praise God.
I am still eating and swallowing fine, all but "bread-stuffs" as it is commonly noticed and said. How is your dad's eating and swallowing? THAT seems to be how most of us find out something is wrong. How long has he had symptoms and how is he doing over all?
It definitely sounds like stage IV but let the doctors do their stuff and wait and see what stage he is. No need to sugar coat anything, but there are those who find that it is just a spot on the liver, or an infected node despite the obvious chances that they are cancerous, it's better to wait.
I wish you all the best and hope for an update from you when you know more!
Please, come back often, ask TOO MANY questions, as there are some GREAT folks on here and a few that will post to you soon (I hope) that are just great at putting things in perspective and laying it "all out there" in one long post usually.
I look forward to hearing from you again soon. Sorry for the diagnosis and this is a nasty cancer to learn about, very little good news usually and more often than not it is bad news. Not to sound gloomy, just trying to be real as it has to be faced head-on and tends to be aggressive, some more than others, but still.
May you find a calm place to take all this in, and I am glad your dad has you in his
corner.
Until then, waiting for Sherri or William to answer this one...
-Eric0 -
Welcomechemosmoker said:Welcome and wish you didn't have to be here too...
Welcome to the boards, pjlee123.
Wish you DIDN'T have to be here, but glad you found the boards and joined none-the-less.
I am stage IVb diagnosed with adenocarcinoma at the gastroesophageal junction. No history of GERD. No heartburn or reflux to speak of. CT shows multiple clustered concerning lymph nodes just below the diaphragm around the aorta / celiac arteries. I had other areas light up as well, but couldn't help notice the similarities...Sound familiar? Mine has spread by the time we got the LNA and final PET to too many nodes and areas to do anything but chemo. Radiation not an option other than to my esophagus to swallow better, which I haven't done and still don't need, praise God.
I am still eating and swallowing fine, all but "bread-stuffs" as it is commonly noticed and said. How is your dad's eating and swallowing? THAT seems to be how most of us find out something is wrong. How long has he had symptoms and how is he doing over all?
It definitely sounds like stage IV but let the doctors do their stuff and wait and see what stage he is. No need to sugar coat anything, but there are those who find that it is just a spot on the liver, or an infected node despite the obvious chances that they are cancerous, it's better to wait.
I wish you all the best and hope for an update from you when you know more!
Please, come back often, ask TOO MANY questions, as there are some GREAT folks on here and a few that will post to you soon (I hope) that are just great at putting things in perspective and laying it "all out there" in one long post usually.
I look forward to hearing from you again soon. Sorry for the diagnosis and this is a nasty cancer to learn about, very little good news usually and more often than not it is bad news. Not to sound gloomy, just trying to be real as it has to be faced head-on and tends to be aggressive, some more than others, but still.
May you find a calm place to take all this in, and I am glad your dad has you in his
corner.
Until then, waiting for Sherri or William to answer this one...
-Eric
Hi and welcome. You will find lots of help here, advice, wisdom and a shoulder to cry on as needed. I certainly hope that your father in law stages at a iii, there are so many more options available. Please keep us posted on the staging, and any questions you may have along the way.
Chantal0 -
You've come to the right
You've come to the right place, though none of us wish to be here. You'll find a wealth of information here along with a ton of support.
May I ask which Mayo Clinic he's going to? My husband's diagnosis was confirmed in Rochester and fortunately, he became a surgical candidate after having chemo and radiation. We were very pleased with his care at Mayo.
Best of luck to your father-in-law. I'll be prayer for stage III!
Mary
Caregiver to Chad
Diagnosed 10/09; stage IVa0 -
The testing is always hard.
The testing is always hard. Hoping it will move along fast and the end result will be stage 111. This is a good site for learning and support as you travel this road. I will be praying for your father in law and family, because I know first hand what a roller coaster it is.
Welcome to our family, Sandra0 -
Thanks all for yoursandy1943 said:The testing is always hard.
The testing is always hard. Hoping it will move along fast and the end result will be stage 111. This is a good site for learning and support as you travel this road. I will be praying for your father in law and family, because I know first hand what a roller coaster it is.
Welcome to our family, Sandra
Thanks all for your responses and welcome.
Eric: sounds too familiar. Good of you to reach out. 4 weeks of dysphagia before he let me know. Esophagram was reassuring (somehow). EGD showed a 4 cm mass at/above the GE junction. If he chews his food well, he can get most things to pass, but he avoids breads. Doc said puree only.
He and his wife of 38 years have dealt with the first blow of news very well, I think, but they probably don't / can't fully see what may be ahead. Me either I guess. I've probably been sugar coating things a little -- but again, we don't yet know if it's stage 3 or 4. They understand it's a bad cancer and may be at a high stage.
Chantal: Hello. Yes, we're hoping for stage III as well, but I'm guessing LNs below the diaphragm have >80% chance of being mets and liver lesion probably same. PET / CT often up stages. Hard to strike a balance among pessimism / optimism / truth / love.
Mary: almost 2 years since diagnosis of stage IVa! My father in law is also going to Rochester Mayo. We're MN natives. I hear Mayo typically completes the work up quickly and gets on to treatment.
Sandra: welcome to ours.
Any suggestions on what to do now? Books / resources? They are not regulars at church but have christian backgrounds and ultimately believe.
Any thoughts on things to do? Learn about the cancer. Learn about his insurance benefits (federal employee BCBS). Research whether or not to enroll in clinical trials available. Plan vacations around treatment ....
I woke up at 4 a.m. today wishing this were a bad dream. Breakfast by 4:30 on a Sunday.0 -
thoughts on things to dopjlee123 said:Thanks all for your
Thanks all for your responses and welcome.
Eric: sounds too familiar. Good of you to reach out. 4 weeks of dysphagia before he let me know. Esophagram was reassuring (somehow). EGD showed a 4 cm mass at/above the GE junction. If he chews his food well, he can get most things to pass, but he avoids breads. Doc said puree only.
He and his wife of 38 years have dealt with the first blow of news very well, I think, but they probably don't / can't fully see what may be ahead. Me either I guess. I've probably been sugar coating things a little -- but again, we don't yet know if it's stage 3 or 4. They understand it's a bad cancer and may be at a high stage.
Chantal: Hello. Yes, we're hoping for stage III as well, but I'm guessing LNs below the diaphragm have >80% chance of being mets and liver lesion probably same. PET / CT often up stages. Hard to strike a balance among pessimism / optimism / truth / love.
Mary: almost 2 years since diagnosis of stage IVa! My father in law is also going to Rochester Mayo. We're MN natives. I hear Mayo typically completes the work up quickly and gets on to treatment.
Sandra: welcome to ours.
Any suggestions on what to do now? Books / resources? They are not regulars at church but have christian backgrounds and ultimately believe.
Any thoughts on things to do? Learn about the cancer. Learn about his insurance benefits (federal employee BCBS). Research whether or not to enroll in clinical trials available. Plan vacations around treatment ....
I woke up at 4 a.m. today wishing this were a bad dream. Breakfast by 4:30 on a Sunday.
Yes, yes, yes, do all the things on your list!!!
Always be sure that whoever goes to his appointments with him has a notebook. Write down your questions in advance, with a space below for filling in the answers. It may sound silly to you, but trust me, once you get in to the doctor, and they start flinging all sorts of information at you, you will forget a lot of what the've said. Often, after an appointment Lee and I will sit in the car and review what we were told, just so we each know what the other person heard. Your brains will turn to mush, trust me, bring a notebook!
Also, Lee and I seem to have very conservative doctors, and we have had to push very hard for some of Lee's important treatments, ie, feeding tube. Don't be afraid to push and be insistent if the doctors are disagreeing with you. This is HIS cancer, and he has the right to treat it HIS way. What I always find helpful is to post questions here, to support my 'fight', before stepping foot into the doctor's office. Again, to use the feeding tube as an example, I read various web sites about the different kinds of tubes, then posted here to see what all the good folks here have. Of course people are more than happy to give honest opinions. From there, I went to the doctor well armed, informed and able to have an intelligent conversation. Honestly, you need to be one step ahead of the cancer, as well as the oncologists. I often comment that I know more about EC than our oc does. (and I mean it!)
You mentioned planning vacations around treatment? Did you mean for you to visit them, or for your father in law to go on vacations? Either way, that's a great idea too. Please though, don't put this one off if travel is important to him. Once treatment starts, it's a long and sometimes unpleasant process. Some of the side effects (like hand and foot syndrome) could really take pleasure out of a nature hike or sight seeing tour. However, the distraction is fantastic! Sometimes it's hard to remember to have a life when ec comes a-knocking. You get so caught up in medications, appointments, research and cancer-talk, you forget that there are other things in life to enjoy.
Most importantly, you seem to be fairly close with your father in law. Enjoy the time you have with him now! We here have all learned that time is against us. But, honestly, I could be hit by a bus tomorrow.... you just never know! Try to keep him busy, entertained and as comfortable as possible.
Chantal0 -
Good morningpjlee123 said:Thanks all for your
Thanks all for your responses and welcome.
Eric: sounds too familiar. Good of you to reach out. 4 weeks of dysphagia before he let me know. Esophagram was reassuring (somehow). EGD showed a 4 cm mass at/above the GE junction. If he chews his food well, he can get most things to pass, but he avoids breads. Doc said puree only.
He and his wife of 38 years have dealt with the first blow of news very well, I think, but they probably don't / can't fully see what may be ahead. Me either I guess. I've probably been sugar coating things a little -- but again, we don't yet know if it's stage 3 or 4. They understand it's a bad cancer and may be at a high stage.
Chantal: Hello. Yes, we're hoping for stage III as well, but I'm guessing LNs below the diaphragm have >80% chance of being mets and liver lesion probably same. PET / CT often up stages. Hard to strike a balance among pessimism / optimism / truth / love.
Mary: almost 2 years since diagnosis of stage IVa! My father in law is also going to Rochester Mayo. We're MN natives. I hear Mayo typically completes the work up quickly and gets on to treatment.
Sandra: welcome to ours.
Any suggestions on what to do now? Books / resources? They are not regulars at church but have christian backgrounds and ultimately believe.
Any thoughts on things to do? Learn about the cancer. Learn about his insurance benefits (federal employee BCBS). Research whether or not to enroll in clinical trials available. Plan vacations around treatment ....
I woke up at 4 a.m. today wishing this were a bad dream. Breakfast by 4:30 on a Sunday.
Research, research and then more research. Seems like you may already doing a bit of that if you have found this site . . .
YES !! A notebook. We did the same from the very first appointment. List any and all questions with some space for an answer - put a check mark next to it when it is answered to your UNDERSTANDING. We have been to every appointment together and we work like this - Kevin is the active listener and question 'asker'. - I take notes as if in lecture when I was in college. As there are conversation breaks, I review answers to questions and remind Kevin of what we wanted to ask. We always debrief, with the notebook open, in the car for quite a while. We use words like 'i heard this' and ' I understand it to be this way, what about you?'. Now, when we have gotten news about progression and Kevin could not participate actively in the conversation because of emotions, I was obviously the one who led the whole appointment - but we had already prepped with our notebook with questions!! At the top of each page, I always put the date, what doctor we were seeing and the hospital. While Kevin was being staged, we had opinions at three different hospitals, so we had to keep it all straight
. Since that time, we have also been sent to a fourth hospital to be considered for a clinical trial there - the notebook is close to full, but we reference it frequently.
Another thing I did was get the written report of each and every scan, image, test, procedure that Kevin had done. I also got a copy of each and every image. They are given to you for free. Usually you will get them on a disc and can wait 30-60 minutes after the test and pick it up. If that is not convenient, you can get it any time you want later. Essentially, I have my husband's entire medical record, except physician office notes, in a filing system in a brief case. It goes with us to every appointment. Many times, we have pulled out reports or scans for reference. It has been immensely helpful. When we went to the hospital for the clinical trial, the doctor there said it was better than anything she has gotten from a doctor since the beginning of her doing research. I kept it in chronological order, along with the discs, and have handed it over. It is just facts, no fluff. No doctor's office visit notes or extraneous information, just the cold hard facts. It made it very easy and clear for her to see what was going on and form a medical opinion.
Also keep a journal of therapies, symptoms, tests, procedures etc. As you get farther down the road, dates start to blur and believe it or not, you forget details.
Hope this helps - I just rattled it off before my morning coffee and it could be a bit jumbled.
Good luck and welcome0 -
Well, the PET scan came backWpturner05 said:Good morning
Research, research and then more research. Seems like you may already doing a bit of that if you have found this site . . .
YES !! A notebook. We did the same from the very first appointment. List any and all questions with some space for an answer - put a check mark next to it when it is answered to your UNDERSTANDING. We have been to every appointment together and we work like this - Kevin is the active listener and question 'asker'. - I take notes as if in lecture when I was in college. As there are conversation breaks, I review answers to questions and remind Kevin of what we wanted to ask. We always debrief, with the notebook open, in the car for quite a while. We use words like 'i heard this' and ' I understand it to be this way, what about you?'. Now, when we have gotten news about progression and Kevin could not participate actively in the conversation because of emotions, I was obviously the one who led the whole appointment - but we had already prepped with our notebook with questions!! At the top of each page, I always put the date, what doctor we were seeing and the hospital. While Kevin was being staged, we had opinions at three different hospitals, so we had to keep it all straight. Since that time, we have also been sent to a fourth hospital to be considered for a clinical trial there - the notebook is close to full, but we reference it frequently.
Another thing I did was get the written report of each and every scan, image, test, procedure that Kevin had done. I also got a copy of each and every image. They are given to you for free. Usually you will get them on a disc and can wait 30-60 minutes after the test and pick it up. If that is not convenient, you can get it any time you want later. Essentially, I have my husband's entire medical record, except physician office notes, in a filing system in a brief case. It goes with us to every appointment. Many times, we have pulled out reports or scans for reference. It has been immensely helpful. When we went to the hospital for the clinical trial, the doctor there said it was better than anything she has gotten from a doctor since the beginning of her doing research. I kept it in chronological order, along with the discs, and have handed it over. It is just facts, no fluff. No doctor's office visit notes or extraneous information, just the cold hard facts. It made it very easy and clear for her to see what was going on and form a medical opinion.
Also keep a journal of therapies, symptoms, tests, procedures etc. As you get farther down the road, dates start to blur and believe it or not, you forget details.
Hope this helps - I just rattled it off before my morning coffee and it could be a bit jumbled.
Good luck and welcome
Well, the PET scan came back as stage 4 (or 4b under the old system) with one metastatic focus in the liver. He's signed up for a clinical trial: a cisplatin, 5-fu, and leucovorin plus an experimental anti angiogenesis drug or placebo. Chemo every two weeks. Ct every 8 weeks.
Any wisdom out there on what to expect? Sounds like Chemo side effects could be brutal. Doc says everyone is different, which is as clear as mud.0 -
Hipjlee123 said:Well, the PET scan came back
Well, the PET scan came back as stage 4 (or 4b under the old system) with one metastatic focus in the liver. He's signed up for a clinical trial: a cisplatin, 5-fu, and leucovorin plus an experimental anti angiogenesis drug or placebo. Chemo every two weeks. Ct every 8 weeks.
Any wisdom out there on what to expect? Sounds like Chemo side effects could be brutal. Doc says everyone is different, which is as clear as mud.
So sorry that the results
Hi
So sorry that the results have come back stg ivb, it does cut your options quite dramatically, and yes your doc is completely right everyone does react differently to chemo and its side effects, I think alot can depend on any existing conditions and general state of health tho in saying that there are alot on here that are young, extremely fit and still find the effects of Chemo way worse than the actual cancer.
My husband was diagnosed in Aug 2010 stg ivb, he is young (45) and fit, he had chemo prior to Christmas which kicked his butt quite badly but did result in us having a few good months at the beginning of this year, he is now on a gentler dose of Taxol, 3 weeks on 1 week of and handles it really well, I think the trick is knowing when enough is enough and and that must be the toughest decision of all.
I believe my job as caregiver is learning everything I can about this horrible disease, finding out what are our options, remembering that it is only palliative care, and backing Mark in anything he wishes to do, because even though it affects every member of our family it is Mark's cancer and his decision as to how far he wants to take this.
You sound like a really loving daughter-in-law, so maybe your role could be one of support, finding out as much as you can so that he can make informed decisions.
The one thing I have learnt is that time spent with Mark is now so much more valuable, because and I hate to be blunt, his future will be cut short, so please spend really good quality time with your father-in-law, tell him everything that is on your mind, and remember we are all here for you, so if you have any questions somebody on here will know the answer or at least tell you what worked best for them, and if you want a really good place to rant you have found it.
Will be thinking of you
Ann0 -
Everyone is different whenpjlee123 said:Well, the PET scan came back
Well, the PET scan came back as stage 4 (or 4b under the old system) with one metastatic focus in the liver. He's signed up for a clinical trial: a cisplatin, 5-fu, and leucovorin plus an experimental anti angiogenesis drug or placebo. Chemo every two weeks. Ct every 8 weeks.
Any wisdom out there on what to expect? Sounds like Chemo side effects could be brutal. Doc says everyone is different, which is as clear as mud.
Everyone is different when it comes to side effects, they just prepare you for what COULD happen from these meds, doesn't mean it will.
Julie0 -
Everyone IS differentpjlee123 said:Well, the PET scan came back
Well, the PET scan came back as stage 4 (or 4b under the old system) with one metastatic focus in the liver. He's signed up for a clinical trial: a cisplatin, 5-fu, and leucovorin plus an experimental anti angiogenesis drug or placebo. Chemo every two weeks. Ct every 8 weeks.
Any wisdom out there on what to expect? Sounds like Chemo side effects could be brutal. Doc says everyone is different, which is as clear as mud.
My husband, dx Stage 3, did 26 Radiations with 2 1 week in-patient chemo sessions. His chemo regime was similar - cisplatin & 5-fu. He had excellent results with his treatment. Sadly, I don't know whether it was the radiation, the chemo or the combination. But I can tell you that his 1st week of chemo was very tolerable, little nausea. He had 1 bad day while in-patient. Most days he was able to go outside and enjoy the garden available to chemo patients. Round 2 was a bit different. He was more fatigued, and a bit more nauseated. There are plenty of drugs to control the nausea though - just stay ahead of it. Chemo did affect his appetite and the taste of some foods. A steroid called Emend was wonderful though and helped him want/desire food.
Before I forget, Nick's best chemo experience came when he was able to drink a "boatload" of water daily. The faster you can wash that stuff out of your system, the better.....
You might also inquire about placement of a Jtube for supplemental feeding. A Jtube is placed below the stomach and into the Jejudum (spelling?) or 2nd small intestine. Placement is there so no nutrients are lost to vomiting. It might be too early for Jtube, but don't wait until too late. Better to be able to maintain calories via tube feedings than to lose weight to chemo.
Others will weigh in with their opinions. Best of luck and know that you and your FIL are in our prayers.
Terry
Wife to Nick, age 48
dx T3N2M0, May 19, 2011
THE surgery, Sept 8, 20110 -
This comment has been removed by the Moderatorpjlee123 said:Well, the PET scan came back
Well, the PET scan came back as stage 4 (or 4b under the old system) with one metastatic focus in the liver. He's signed up for a clinical trial: a cisplatin, 5-fu, and leucovorin plus an experimental anti angiogenesis drug or placebo. Chemo every two weeks. Ct every 8 weeks.
Any wisdom out there on what to expect? Sounds like Chemo side effects could be brutal. Doc says everyone is different, which is as clear as mud.0
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