1st trip to cancer center

Mtngirl7533

My husband and I made our first trip to the cancer center today! We met with many doctors, nurses, coordinator, ect. Over the next week or so my husband will have 2 more tests, Pet Scan & PFT's. The Nov. 3rd will have a Port and J Tube placed. While they place the J tube, they will look around the stomach as the lining looks a little thickened! They want to be sure it hasn't spread to stomach lining! He will then begin chomo/radiation for 5 weeks or so. The docs will then wait a couple of weeks or so when he's completed that to scan him again and see the results. Then probable surgery as well as more chemo. Of course, we realize this plan could change but right now we go forward! The doc explained that Barrett's Esophagus was confirmed as well as him being HER2 postive! So we truly learned alot from our visit today! I am praying of course that when they take a look at his stomach they wont find anything else! They weren't able to look with either Enscopy due to the size of the tumor as they can't get the scope past it! Hopefully the chemo/rad combo will shrink that done! Still many tests and doc appts to go! Praying that someday this is just a distant memory! I will return often as being here gives me alot of info, tips, advice from wonderful people who have been there! Praying for all who are fighting cancer and be well!

paul61

It sounds like they are doing all the right things

It is very good that they are going to find a way into the stomach while placing the “J-tube”. I assume the “thickening” identified was from a CT scan. Lots of things can cause abnormalities noted in a CT scan, I have several things that show up in my CT scans. The laparoscopic exploration when they place the “J-tube” and the PET scan should bring more clarity to that.

Don’t be intimidated by the “J-tube” I had one for some time after surgery and once the nurses show you how to manage it, it is really quite easy to take care of and will provide your husband with an immediate form of nutrition and hydration that he will need. Just remember to flush the tube after every use and keep some diet Coke around. In the unlikely event that the tube becomes clogged, nothing clears a plugged “J-tube” like diet Coke. If your husband reports nausea in the morning after waking up from his over-night tube feeds it may be that the rate is too high on the pump. I had that problem early on and turning down the pump rate solved the problem.

Having the HER2 test done is very important. If he is HER2 positive that means he is a candidate for an immunotherapy drug called Herceptin that binds with certain proteins on cancer cells and blocks the “growth” signals.

Take lots of notes during meetings with your treatment team and don’t be afraid to go back after you have reviewed your notes to ask for clarification on things that are not clear.   

Best Regards,

Paul Adams

McCormick, South Carolina

 

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Seven Year Survivor

 

Deathorglory

Hello Mtngirl

Hello Mtngirl,

Your husband's journey seems like it's going to be similar to mine.  I did chemo/radiation prior to surgery and then did more chemo after surgery.  The chemo/radiation I had used a lesser dose of the chemo to "activate" or work in conjunction with the radiation.  The chemo was relatively mild and, with my doctor's monitoring, I had minimal side effects from it (didn't even lose my hair).  I actually had more side effects from the radiation.  The radiation basically fried my esophagus shut and I had to take liquid morphine and lidocaine based "magic mouthwash" to be able to eat even soft foods.  I had so much meatloaf and mashed potatoes that I havn't had it since (2008). 

When I did the chemo after the surgery, it was because I was young (40) and we wanted to be as aggressive as possible and bayonet the cancer corpses to make sure they were really dead.  The surgical pathology showed that the chemo/radiation had worked fully, but we went ahead anyhow.  That course of chemo was full strength and went for 6 months.  The side effects were worse (lost ALL of my hair, more nausea) but it was manageable.  I worked full time straight through it.  

I had a recurrence a couple of years later (2011), anyway, but I'm still comfortable with how aggressive we were and would go that same route again.  I was looking for decades of extended life, not just a few extra years.  When I had the recurrence, it was in a lung and I was stage IV with a very grim prognosis.  I tested HER2+ and was fortunate that I was at top of the line cancer centers where they actually knew to test for it.  Herceptin had just been approved for stage IV EC a couple of months prior and there were, for years, stories here of folks who weren't tested at all or who were tested much later than they should have been.  Herceptin has since been approved for earlier stages of EC like your husband's.  It can be a very useful ally if the EC fight.  I was given 7-8 months to live and instead, have been getting herceptin every week for 6 years.  It's pretty mild with minimal side effects (at least for me).  It is given in conjunction with the regular chemo and will just extend his chemo day a little bit.  

Hope they find nothing in his stomach,

Ed

Mtngirl7533

Deathorglory said:

Hello Mtngirl

Hello Mtngirl,

Your husband's journey seems like it's going to be similar to mine.  I did chemo/radiation prior to surgery and then did more chemo after surgery.  The chemo/radiation I had used a lesser dose of the chemo to "activate" or work in conjunction with the radiation.  The chemo was relatively mild and, with my doctor's monitoring, I had minimal side effects from it (didn't even lose my hair).  I actually had more side effects from the radiation.  The radiation basically fried my esophagus shut and I had to take liquid morphine and lidocaine based "magic mouthwash" to be able to eat even soft foods.  I had so much meatloaf and mashed potatoes that I havn't had it since (2008). 

When I did the chemo after the surgery, it was because I was young (40) and we wanted to be as aggressive as possible and bayonet the cancer corpses to make sure they were really dead.  The surgical pathology showed that the chemo/radiation had worked fully, but we went ahead anyhow.  That course of chemo was full strength and went for 6 months.  The side effects were worse (lost ALL of my hair, more nausea) but it was manageable.  I worked full time straight through it.  

I had a recurrence a couple of years later (2011), anyway, but I'm still comfortable with how aggressive we were and would go that same route again.  I was looking for decades of extended life, not just a few extra years.  When I had the recurrence, it was in a lung and I was stage IV with a very grim prognosis.  I tested HER2+ and was fortunate that I was at top of the line cancer centers where they actually knew to test for it.  Herceptin had just been approved for stage IV EC a couple of months prior and there were, for years, stories here of folks who weren't tested at all or who were tested much later than they should have been.  Herceptin has since been approved for earlier stages of EC like your husband's.  It can be a very useful ally if the EC fight.  I was given 7-8 months to live and instead, have been getting herceptin every week for 6 years.  It's pretty mild with minimal side effects (at least for me).  It is given in conjunction with the regular chemo and will just extend his chemo day a little bit.  

Hope they find nothing in his stomach,

Ed

HER2t

Thank you so much for sharing your experinece and information! Yes, I am glad they are going to take a look around Friday when he has the medi port & j tube placed! Wee go the center tomorrow for Pet Scan and to see the nutritionist/dietician! That's where we will learn to care for the j tube and more! Thank you for taking the time to respond and be well:)

Mtngirl7533

paul61 said:

It sounds like they are doing all the right things

It is very good that they are going to find a way into the stomach while placing the “J-tube”. I assume the “thickening” identified was from a CT scan. Lots of things can cause abnormalities noted in a CT scan, I have several things that show up in my CT scans. The laparoscopic exploration when they place the “J-tube” and the PET scan should bring more clarity to that.

Don’t be intimidated by the “J-tube” I had one for some time after surgery and once the nurses show you how to manage it, it is really quite easy to take care of and will provide your husband with an immediate form of nutrition and hydration that he will need. Just remember to flush the tube after every use and keep some diet Coke around. In the unlikely event that the tube becomes clogged, nothing clears a plugged “J-tube” like diet Coke. If your husband reports nausea in the morning after waking up from his over-night tube feeds it may be that the rate is too high on the pump. I had that problem early on and turning down the pump rate solved the problem.

Having the HER2 test done is very important. If he is HER2 positive that means he is a candidate for an immunotherapy drug called Herceptin that binds with certain proteins on cancer cells and blocks the “growth” signals.

Take lots of notes during meetings with your treatment team and don’t be afraid to go back after you have reviewed your notes to ask for clarification on things that are not clear.   

Best Regards,

Paul Adams

McCormick, South Carolina

 

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Seven Year Survivor

 

Paul

Thank you very much for sharing your experience and passing on information that will undoubtedly be very helpful to us as we begin this journey! It is greatly appreciated! Be well!

Dave Tronnier

Mtngirl7533 said:

HER2t

Thank you so much for sharing your experinece and information! Yes, I am glad they are going to take a look around Friday when he has the medi port & j tube placed! Wee go the center tomorrow for Pet Scan and to see the nutritionist/dietician! That's where we will learn to care for the j tube and more! Thank you for taking the time to respond and be well:)

fight fight fight

 

September 16, 2015 I was diagnosed with stage 3 Adenocarcinoma esophageal cancer. I underwent 25 sessions of proton beam radiation along with chemotherapy over the course of 5 weeks. After waiting another 5 weeks to recover from that kind of crazy I had my Ivor Lewis surgery, 14 hours on the table. After 9 days in the hospital I was back home. Since my Ivor Lewis I’ve lost 90 pounds and have undergone 34 dilations and 2 different PEJ tube placement surgeries. I’ve been put under Propofol 35 times now since my 1-5-2016 Ivor lewis surgery. The good news, I had my feeding tube removed this past June and have been able to maintain my new 210 lb fighting weight without tube feedings. My stricture had closed to 4mm and kept closing to the point of not being able to even drink water without choking for months. Today after 34 dilations, 5 needle knife surgical procedures along with 6 steroid injections into the stricture plus 30 hours in a hyperbaric oxygen tank therapy, my stricture is finally staying open at 15mm. NO MORE dilations scheduled at this time... YEA!!! I can swallow most all foods now. Bread is difficult and floats to the surface of what’s left of my stomach after eating and makes me regurgitate.  Meat is difficult, but hey I eat it and spit it out as needed, swallow what I can and still enjoy the taste.

 

I never feel full and my motility is very slow so eating is a crapshoot as to whether I’m going to overfill my stomach/pouch/esophagus whatever you call it. I end up regurgitating nearly every time I eat, can’t help it; it’s like filling a glass of water to overflow, same thing happens to my gut, I can’t tell when I’m full. Well that’s not completely true, I do know I’m full for sure when my voice changes and I have to remove the last 3 bites of food so I can talk and breathe again. My wife calls me the chummer when we go fishing.

 

OK… enough of that. Life is precious and I am blessed to have been given another shot at it. Today is challenging at time as I do struggle with some depression over the losses, but I’ve adapted to my new way of life. I no longer worry about being embarrassed by my need to regurgitate when needed. I bring my fancy little puker bags with me to the restaurant and sit facing away from people whenever possible. I’ve learned to be very discreet, and it not like major blowout pukes, it’s just the overflow.

 

What I would tell anybody that reads my post is this. I would not change a thing, life is great today above ground and I’m cancer clean 2 years later and going strong. The worms are going to have to wait another 25 years to get me. I’m 59 years old today and feeling better than I have in years.

 

FIGHT FIGHT FIGHT all the way and never stop until you kickass on the **** that cancer is. Peace !

 

LorettaMarshall

Mtngrl~Just 2 let U know U R N our prayers~Write as U have X

 

This is a copy of my letter to you when you wrote under the title HOPE.  But just in case you missed my letter there, I'm putting it here as well.  I know how hectic things are and it is a "weekend" now and you may be at the mountains.  If so, don't bother to write till you get back, but I'm just curious as to how things went.  Usually the first treatment will be pretty much symptom free, but chemo effects are gradual, but hopefully all side effects can be "tolerated".  It's the end game that counts--so remember to take the long look. - Loretta

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My repeat posting is below: 

 

Mtngrl~Not 2B a pest, but we expect 2 hear from U re 11-17 trtmt

Hello again “Mountain Girl”

You know we've been keeping up with you and you've told us that your husband is supposed to start chemo on November 17, 2017.  How are things going?  We know that you are "stretched for time" but when you get a chance, we want to hear if Herceptin was added to the regimen, and of course, if a medi-port was placed?  

Remember to ask for "hydration" the day following, or any time you think he needs it.  But with the "J" tube, you can give him "water" on a regular basis in addition to the formula.  

As I’ve shared with you before, my husband went to UPMC for a 2^nd opinion, and was found to be a good candidate for the then-relatively new IVOR LEWIS MINIMALLY INVASIVE ESOPHAGECTOMY (MIE).  (Surgery date:  May 17, 2003.)  Since then this totally laparoscopic procedure has risen to the “top” of the line for those needing esophagectomies.  UPMC is ranked #6 in the United States for Gastrointestinal diseases, the category in which Esophageal cancer is listed.  Mayo Clinic in Rochester is ranked #1 for GI problems.  So remember to check out a highly-ranked hospital after your hubby’s series of neo-adjuvant chemo/radiation treatments are finished.  I’ve listed the link to USNewsHealth report on a separate topic so people could gain more insight on where to go for the best treatments for their particular problem.

1.       https://csn.cancer.org/node/312985

Remember my husband is still cancer free after 15 years of being diagnosed with Stage III (Adenocarcinoma @ GE junction - (T3N1M0).  He has had NO difficulties.  After his discharge on Day 5 from the University of Pittsburgh Medical Center (UPMC), we went downtown shopping on Day 8.  (I have photos to prove it as it is my custom to take lots of pictures!  I went into Saks Fifth Avenue just to say I’d been there.  Now it would be a lie if I said “I shopped there!)   For the first 3 months we stayed in the “Family House Shady Side” (a Pittsburgh Family House) and went back to see Dr. Luketich at the Hillman Cancer Clinic for checkups as necessary.  Checkups are very frequent right after discharge from the hospital.  And UPMC has 4 “family houses” for the convenience of out-of-town patients.  One can call “Housing” and arrange for a reservation if they need to stay there.  It’s much less expensive than staying at a motel.  Now it’s even better if one has relatives close to that area and can stay there.  After all, isn’t that what’s “family” is all about?  YES. 

Since we had arranged for a sweet friend to keep our 4 young grandchildren which we were raising at a time, we took advantage of the situation, and after surgery, we had both a “second honeymoon” and a much-needed vacation. After my husband’s discharge, we traveled to 3 surrounding states for sightseeing tours, and my husband did all the driving.  I say “second honeymoon” because we were so happy to be reunited after the MIE surgery.  I will tell you that when I saw the orderly wheeling my husband down the corridor, and I went to the family waiting area, that was a long 7 hours.  My heart was filled with both fear and hope.  (Surgery time will vary depending on the patient’s needs.)  But I never knew for sure if that would be the last goodbye.  Thank God for the expertise of one brilliant Dr. James D. Luketich.  I truly believe that God gifts certain people with extraordinary abilities for the benefit of mankind.  Dr. Luketich is one of those thoracic surgeons that stands at the top of the list. 

So we pray that you will have the same success story as we have.   My husband and I appreciate each other more than ever before.  Our love has deepened and our care and concern for other Esophageal Cancer patients is a passion of ours.   So these are the kinds of "SURVIVOR" stories that certainly need to be told over and over again to give newbies like you a big “dose of HOPE!”

The trees are dropping leaves of red and golden hues here now.  My wish for you is that you & your husband will remain cancer free and that you will be able to return to your mountain home to enjoy many summers—winters—falls and springs.  By that time the “colors” of your hair mostly likely will turn gray or white or at worse “loose” as in bald!

Sincere care & prayers for you and your family,

Loretta

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2. https://health.usnews.com/best-hospitals

“U.S. News Hospitals Rankings and Ratings

The U.S. News Best Hospitals analysis reviews hospitals' performance in clinical specialties, procedures and conditions. Scores are based on several factors, including survival, patient safety, nurse staffing and more. Hospitals are ranked nationally in specialties from cancer to urology and rated in common procedures and conditions, such as heart bypass surgery, hip and knee replacement and COPD. Hospitals are also ranked regionally within states and major metro areas. The Honor Roll recognizes 20 hospitals with outstanding performance across multiple areas of care…”

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3. https://health.usnews.com/best-hospitals/rankings/gastroenterology-and-gi-surgery

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