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jss2011
Posts: 137
Joined: Sep 2011

Guess I'll start by saying Hi and thank you all for sharing.

Today is day 3 of chemo for my husband, finally, as he was dx in mid june!

Laproscopy shows esophageal tumor quite long and involves upper portion of stomach and 3 lymph nodes.No staging was mentioned. Will be sure to get info on the 19th.

Plan: chemo, radiation, surgery.

So life is pretty normal at this point but I am starting to be a pain (nag) when it comes to eating! Hubby has lost alot which he originally was pleased about but I do not recommend cancer as a diet plan!

Hugs and prayers
Julie

Daisylin's picture
Daisylin
Posts: 380
Joined: May 2011

Welcome to this site, you will find a lot of helpful information here. As Sherri mentioned, staging is always first priority! If surgery is an option, that's good, and it means that he's likely stage iii. Stage iv's are not operable. Please call your doctor immediately and find out the stage, that will greatly impact your research, options and treatment plan. If he's already began his chemo, he has been staged, they perhaps just didn't tell you what it is.

Sorry to hear that your husband is facing this, hope he can stay strong during chemo. Also, you mentioned that he's lost a lot of weight. That is not good. Has he been offered a feeding tube? My husband just recently had one placed, and it's made a big difference in his energy levels and hydration. We had to fight pretty hard to get the doctor to agree to it. Please remember, it's most important to stay on top of his treatment, and be one step ahead of the doctors. If you want some type of treatment, don't let your doctor persuade you otherwise. (provided that you can back up your decisions with logical thought, and that the doctor does not have GOOD reason for denying you)

Finding this site is a good step to becoming the expert that you will need to be in the days to come. please keep us updated, and if you have ANY questions, just ask.

Chantal
wife of Lee (leeinlondon) stage ivb

chemosmoker's picture
chemosmoker
Posts: 525
Joined: Aug 2011

Julie,
I always hate to say it, but welcome to the boards. Glad you posted and joined as there is a LOT of great wisdom here for sure! I have learned a LOT since being diagnosed in June as well.

Sherri is right, you need staging, although I WILL share that MY oncologist actually said that "staging is a metaphor" whatever that means, and she didn't want to stage me. I insisted, as I had read enough to know that it was a required part of cancer treatment. It turns out it was more of the fact that she didn't want me to 'give up' if all I heard was the stage IVb and that I was incurable and not a surgical candidate. I can appreciate that. I appreciate KNOWING a lot more though. She really doesn't LIKE staging.

Please, post us some more information so we know all the things that help the smart ones here offer you the best advice. Trust me, they are waiting to do just that.

MY only advice would to be to go easy on your hubby as far as eating goes. He needs to eat, and drink LOTS of fluid as well, but don't make it harder by nagging him. You do not want to turn him off from eating, especially with the already huge handicaps that chemo and radiation can pose to being able to eat, taste, want to eat, have an apatite, etc.

In the meantime, glad you are here and may you continue to have as much 'normal' as you can stand. Will ad you to my prayers.

-Eric

jss2011
Posts: 137
Joined: Sep 2011

Hi Sherri, Chantal, Eric

I am in St Thomas, On Canada, which makes me a neighbour of Chantal and Lee.
It seems things here move at a slower pace than in the US.

This all started with thinking it was an ulcer. Hubby finally went to gp and was sent for x-ray/ultrasound. He through out his back trying to lay flat on table, poor guy. So no tests and he didn't make it back for many wks. Back to GP about a wk later and dr uses the C word as a possibility. So now CT, which seems to contradict other info. Wait again for endoscope/biopsy. About 4 or 5 days later hubby gets calls for appt for head ct, then another call for pet scan, what the heck!! Is this the way of telling you without having to say it! Scared, confused and ticked to say the least, call gp for appt asap. Not that there is a good way to hear this, so yes confirmed what we feared.

So CT,Pet, appt with surgeon who does the laproscope. After this scope things started to move quickly (3 nodes now not 1). So I think the staging is done just haven't had official appt with oncologist yet. He spoke to us in the hospital following the scope to give us chemo info, alot to take in on surgery day.
I do feel that these drs are wonderful but I am also seeing the health care crisis we have in Canada. We need to stay ontop of everything and hubby is actually doing good with this task for now! They had a pic line booked and he decided to take oral.
The meds are cisplatin/epirubicin iv 1x every 3 wks and 2 wks oral capecitabine.
So reading Lees posts about still feeling like crap 5 wks later is not what I wanted to hear. Is anyone else on this chemo??

My hubby is 55 and overall in good health, still smoking ( i do too). Never had any GERD, no family history of cancer. He still weighs 250+ but he needs to maintain now, as chemo and surgery have a way of kicking the **** out of a person.
Yes a feeding was supposed to be done day of scope but it is on hold ( hubbys choice) as he can still eat drink just most days not enough.
I will try not to nag....more like tempt with yummy take out and high protein boost. Seriously he is taking it in stride as he knows I mean well. We have been married 13 yrs so I know when the line is getting crossed.
And now I wish I could type with more than 2 fingers LOL
Any info/feedback is appreciated.

Julie

chemosmoker's picture
chemosmoker
Posts: 525
Joined: Aug 2011

Julie,
It sounds like you two are on top of it for the most part. I have a feeling you are about to get a LOT of opinions about the feeding tube, and from what I have read (I DO NOT have one, and I am NOT doing ANY chemo or radiation or surgery so I deflect ALL of that advise to the many here with experience in those....it's coming) a feeding tube is almost a NECESSITY when one is doing chemo and radiation as your hubby's ABILITY or DESIRE to eat will change drastically with treatment, and it's best to have it done while "strong" when you don't feel like you need it yet, so it's there after surgery and during treatment.
But, again, as an observer of these, I digress and wait for others to post now. I did want to say thanks for the info and glad you are staying on top of things together. The together part is THE MOST important to me so far. By far.
And I didn't mean to get on you wrong about nagging. Nothing wrong with tempting! I just know that early on it was a GRAVE fear (for me most of all!) as I went from 184 to 124 in NO TIME and had no more to loose except muscle. That's scary enough to make ANYONE want to force-feed me! But we struck a great balance and my wife is the BEST at staying neutral but totally supportive. She is amazing. I am blessed.
Welcome again and please keep posting. There are lots of people who can advise you on the other questions so I stop here.

-Eric

Daisylin's picture
Daisylin
Posts: 380
Joined: May 2011

Julie, just wondering if you are being treated in London? Also, if you are, who is your oncologist, surgeon, radiation doc? What I mentioned earlier about staying on top seems to be most important, being in Canada. For some reason, every treatment, option and idea that we've had has NOT come from our doctor, but from online research, and especially this site. ( examples are HER2 testing, theresphere treatment, hydration and feeding tube) I don't know if it's our particular doctor who's very conservative, or if it's a Canadian health care crisis issue or what..... I really hope you find better luck than we have with our docs. We find them to be a bit on the 'less is more' side of care. Their main focus seems to be on pain relief (which is good!) and chemo, nothing else though. I know that stage ivb is palliative care only, but still, what we were asking for was quality of life stuff.

Also, we have not had much luck in this department, but by law, they have to give you copies of any and all tests that occur. We have asked and asked, and have only gotten a few pages of stuff, and that only because we asked the resident doctor. These results are so important, and are good to have in a binder, folder or whatever with all of your other 'stuff'. I posted here about this issue a while back, and it seems like everyone in the states is afforded easy access to their files. During chemo, one time, Lee saw his file sitting there on the table beside the bed, so he decided to take a peek at it. The nurse came over and told him that he really should not be reading that. WHAT?????? Anyways, we've mostly given up on asking for stuff, but really wish we had pushed harder since day one.

Lee was on the same chemo as your hubby, but he did 4 rounds starting in February, then took a break from June to Mid August. When he re-started this time around he was way weaker, dehydrated and starving when he went back. I firmly believe that if he was given the feeding tube WAY earlier, the side effects would not have been as bad as they were. During his first 4 rounds, he was nauseated and vomiting for the first 4 days, then was pretty good for the rest of the 3 week cycle. He did have some other side effects that seemed to be cumulative, such as hair loss, mild hand and foot syndrome, fatigue and watery eyes. However, aside from the 4 days at the start of the cycles, he was eating like a horse, I think he may have even gained weight! So, truly the side effects were unpleasant, but not unbearable. The second time around, like I said, he was at a disadvantage. I do hope you reconsider the feeding tube. Like Eric said, if you wait too long, it may be to late. Think of it as an insurance policy. You don't have to use it if you don't need it!

I hope your hubby fares well with treatment, please keep us posted, and if you have any questions, we're all here for you!
Chantal

jss2011
Posts: 137
Joined: Sep 2011

Hey Eric, for us caregivers it is a fine line at times, even asking Do you want anything? can be a nag if done too often. But we found welchs grape juice to be a big hit yesterday and the bottles if almost half gone.

Chantal, yes being treated in London. All things considered it is a pretty good set up.
Oncologist is Sanatani who we only spoke with the day of the laprascope. We had been trying to get appt for him and waiting and waiting. Dr Inculet (surgeon) knew he was in the hospital and set this up, so far very pleased. Radiation is Yu who I did not meet, but hubby said this guy doesn't hold back. I believe we have a solid team on our side. That being said, I'm not just gonna agree with everything beacause they say, I am one to ask questions ( more than hubby wants to hear the answers to I'm sure).
Don't know anything about HER-2, googled it but I am finding it difficult to understand. I will look for info on this site.
Have you heard of jx-594? I saw something on cn news with an ottawa dr but it in the US. Supposedly they need a larger clinical trial before approval, don't know when this will happen. Sanatani said possibly for future in our case (translation...not gonna happen???) as this could be 10 yrs out. But I am still keeping an eye on this drug.
As for files, gee more things I won't understand! I may want copies of the bloodwork as I will start a log for side effects and this may help.
Seems the biggest thing is hydration which affects appetite which affects nausea. So feeding tube is a daily mention.
Hope Lee is feeling better today and that you enjoy the holiday.
Julie

jss2011
Posts: 137
Joined: Sep 2011

Hey Eric, for us caregivers it is a fine line at times, even asking Do you want anything? can be a nag if done too often. But we found welchs grape juice to be a big hit yesterday and the bottles if almost half gone.

Chantal, yes being treated in London. All things considered it is a pretty good set up.
Oncologist is Sanatani who we only spoke with the day of the laprascope. We had been trying to get appt for him and waiting and waiting. Dr Inculet (surgeon) knew he was in the hospital and set this up, so far very pleased. Radiation is Yu who I did not meet, but hubby said this guy doesn't hold back. I believe we have a solid team on our side. That being said, I'm not just gonna agree with everything beacause they say, I am one to ask questions ( more than hubby wants to hear the answers to I'm sure).
Don't know anything about HER-2, googled it but I am finding it difficult to understand. I will look for info on this site.
Have you heard of jx-594? I saw something on cn news with an ottawa dr but it in the US. Supposedly they need a larger clinical trial before approval, don't know when this will happen. Sanatani said possibly for future in our case (translation...not gonna happen???) as this could be 10 yrs out. But I am still keeping an eye on this drug.
As for files, gee more things I won't understand! I may want copies of the bloodwork as I will start a log for side effects and this may help.
Seems the biggest thing is hydration which affects appetite which affects nausea. So feeding tube is a daily mention.
Hope Lee is feeling better today and that you enjoy the holiday.
Julie

chemosmoker's picture
chemosmoker
Posts: 525
Joined: Aug 2011

Julie,
HER2 is a GENE TYPING.
You are either HER2 positive (expressed HER2+) and can then have Herceptin as a chemo choice that is very effective, or, like me, you are HER2 negative or neutral (expressed HER2neu). I am NO expert on this, but the very first thing they did when they found my cancer (EC) was the Gene Type Test that was just developed in 2007. With it, they can tell the difference in two different (may be 3) types of cancer genes for EC and breast cancer (where it originated I think) and how to best fight them. I cannot have Herceptin as it would be useless against my type of gene/cells in the cancer.

As said, I am NO expert but this is what I understand. I am betting someone else can post a much more thorough explanation of this one! Hope this might get you started at least.

-Eric

Daisylin's picture
Daisylin
Posts: 380
Joined: May 2011

Hi Julie, well, we do share the same oncologist. Have you been given the phone # for the centre? We have found that any time we call, the triage nurse that answers will take messages and pass them on to Dr Sanitani's team. They will then call you back, usually fairly promptly and will set up an appointment as needed. They have had us in for many information gathering meetings. Don't be shy to call them or the on call doctors in the evenings if you need anything. They are always willing to make appointments other than the scheduled pre chemo ones. Usually they have gotten us in within a few days.

Unfortunately, he's the one that has not been willing to give us any documents. You may have better luck if you ask one of the many interns that work with him. Some of them have been fantastic. I think that even though some of it may be confusing and not easy to understand, trust me, you will become an expert...... and soon! Be sure to bring a notebook to each appointment, and a list of questions. We seem to forget half of what we've been told, so I write it all down, then we debrief in the car after each meeting. Although we usually don't leave feeling satisfied, they are always willing to spend as much time with us as needed, and will answer all our questions. They never seem to rush us out the door. As I've said, he's very conservative (with us anyways) so be ready to push and be persistent with them. But as I've said in previous posts, perhaps it's a stage iv thing. I hope you feel more satisfied than we have.

Also, great idea logging side effects, eating, drinking, vomiting, bowel function and generally how he felt each day. You honestly do forget, and every day becomes a blur. We are constantly trying to remember the sequence of events and what happened when. I am fairly organized now, but at first, before we knew any better my notes were unclear and disorganized. Even if you just take 2 minutes each night, and write some notes about the day. This could come in handy during your meetings with the docs too. For example, if he has nausea for the first 5 days of the cycle, they can change dosages or give different anti nauseants to use during that period. Then you can compare during the next cycle, and go from there.

Hydration is most important, when Lee got dehydrated they did send out VON nurses every day to hook him up to an iv. Not very convenient, but it did help greatly. Now that he has the feeding tube, he can hydrate there easily. Not to sound repetitive and naggy, please keep pushing for it. It really saved Lee. It may not be pretty or fun, but if he gets to the point of not being able to eat, he'll appreciate it. The tube can easily be removed at a later date as well if and when he can eat normally.

Be well, happy long weekend!
Chantal

TerryV's picture
TerryV
Posts: 916
Joined: Jul 2011

Sorry you're here, Julie, but there isn't a better source of information and support for EC anywhere on the Internet, so I'm glad you've found us.

Quoting Eric here - " a feeding tube is almost a NECESSITY when one is doing chemo and radiation as your hubby's ABILITY or DESIRE to eat will change drastically with treatment, and it's best to have it done while "strong" when you don't feel like you need it yet, so it's there after surgery and during treatment."

That is 100% correct. A J-tube, placed in the Jejunum, the 2nd small intestine, is used for EC patients. The J-tube because of its location will accept nutrition (prepared formula) & hydration even when chemo or radiation nausea prevents the stomach from retaining anything. This surgery is best when the EC patient is still "at the top of his game" and before it is needed - this is less stressful on the EC patient.

My husband's J-tube was placed the same day he received a MedPort and this was PRIOR to the start of radiation / chemo. Thank God it was done that way, because if they would have waited until chemo took his appetite, the surgery to place the tube would have taken his positive attitude and outlook. Doing in the way they did allowed him to feel decent through a really crappy time.

Best wishes to you and your husband as you travel this path. Be aggressive in your search for quality care and treatment; be more aggressive than the cancer.

Prayers to you both!

Terry
Wife to Nick, Stage 3

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