stage 4, after surgery, second chemo round

Guigna

hello guys I have been watching here for some time now (since September when DH was diagnosed)
He's had a terrible journey including almost 2 months in the hospital after life threatening complications.
He went in to this a fit endurance athlete; now he's frail and thin and looks pretty old.

So he has some mets, and even though that's terrible and creepy, they had planned this second round of chemo anyway; as soon as he got "strong enough"
After 2 months out of the hospital, he finally gained 3 measly pounds and now in 1 week of chemo they wiped that weight gain out. We are both terrified, he's skin and bones now, what the heck is he going to look like in 3 months??

Would be interested in hearing if any of those of you who tended to be thin in the first place could ever build any muscle and fat back up after these severe regimens.

TerryV

"Welcome" to our world, Guigna
I'm so sorry that you and "HD" are forced to go through this. You have found one of the 'Net's most informed, most compassionate EC forums. We are all living this nightmare, whether we participate as caregivers or cancer "survivors" - we all know the path you are on.

Please tell us a bit more about DH and his journey so far? What treatments did he have prior to surgery? Was his surgery the esophagectomy? If so, which surgery - IL, THE, or MIE? What Cancer Center do you use and who are his doctors? Where are the mets? Does DH have either a G or J tube to supplement oral nutritional intake? Feeding tubes are the norm here - useful for maintaining weight during treatment or after surgery, or even replacing oral intake for those with larger EC tumors.

Please know that we don't ask to be nosy, but because we care and wish to help. Share as much information as you are comfortable with and know that you are among friends.

Terry
wife to Nick, age 48
dx 05/19/11 T3N1M0
28 rads / 2 weeks inpatient Cisplatin & 5FU
THE 09/08/11
Clean Path 09/13/11

Court_Ren

I am sorry to hear this. My
I am sorry to hear this. My husband has stage four EC. I tend to trick him. I put Whey Protein in his shakes. I make smoothies with fruit, ice cream, whole whipping cream, ice cream, and ensure. If you mask it with banana they don't even know it's in there. He gained 11 lbs in 9 days, and it wasn't water weight. It has been hard for me too. I watched him loose almost 75 lbs in 6 months. I make him drink the ensure, and he keeps up with gatorade, and juice. He is slowly building some muscle back up, but is so weak in the legs, and arms that it is hard to get that back. We bought an eliptical, and with all of the whey protein that he has been getting in his shakes, it helps to build your muscles back. He has had a total of 14 treatments. Two different kinds of chemo. 5FU, and taxotere, and taxotere by far is the worse for pain, but 5FU is what took all of his weight. If there is anything else that I can think of I will let you know. It was sort of funny. My husbands oncologist said to him the other day if you were over in the cardiac side of this hospital all the drs would tell you to stay away from things that will make you fat. Here we encourage it. I sure do hope that this helps. Keep in touch.

Guigna

TerryV said:

"Welcome" to our world, Guigna
I'm so sorry that you and "HD" are forced to go through this. You have found one of the 'Net's most informed, most compassionate EC forums. We are all living this nightmare, whether we participate as caregivers or cancer "survivors" - we all know the path you are on.

Please tell us a bit more about DH and his journey so far? What treatments did he have prior to surgery? Was his surgery the esophagectomy? If so, which surgery - IL, THE, or MIE? What Cancer Center do you use and who are his doctors? Where are the mets? Does DH have either a G or J tube to supplement oral nutritional intake? Feeding tubes are the norm here - useful for maintaining weight during treatment or after surgery, or even replacing oral intake for those with larger EC tumors.

Please know that we don't ask to be nosy, but because we care and wish to help. Share as much information as you are comfortable with and know that you are among friends.

Terry
wife to Nick, age 48
dx 05/19/11 T3N1M0
28 rads / 2 weeks inpatient Cisplatin & 5FU
THE 09/08/11
Clean Path 09/13/11

ha, "DH" means "Dear Husband"
He had cisplatin and 5FU first. Then he had the "pull up" where the esophagus is removed and the stomach turned into a new esophagus. The surgery was a great success except for the complications..

Now he's getting cisplatin and 5FU again, but it is not as intense.
We live in a major metropolitan area and have one of the best onco teams there is. He does have a J tube and we were just getting ready to get it taken out... but now with CHemo hitting him so hard, I am not so sulre.
the major met is on his hip bone outside of the iliac crest, so they are confident that radiation can take it out without upsetting too many major organs. He has some other ones too, but the Radiation Oncologist said to imagine them to be the "dust" that the chemo will sweep away..

I hope i answered your questions well.

Guigna

Court_Ren said:

I am sorry to hear this. My
I am sorry to hear this. My husband has stage four EC. I tend to trick him. I put Whey Protein in his shakes. I make smoothies with fruit, ice cream, whole whipping cream, ice cream, and ensure. If you mask it with banana they don't even know it's in there. He gained 11 lbs in 9 days, and it wasn't water weight. It has been hard for me too. I watched him loose almost 75 lbs in 6 months. I make him drink the ensure, and he keeps up with gatorade, and juice. He is slowly building some muscle back up, but is so weak in the legs, and arms that it is hard to get that back. We bought an eliptical, and with all of the whey protein that he has been getting in his shakes, it helps to build your muscles back. He has had a total of 14 treatments. Two different kinds of chemo. 5FU, and taxotere, and taxotere by far is the worse for pain, but 5FU is what took all of his weight. If there is anything else that I can think of I will let you know. It was sort of funny. My husbands oncologist said to him the other day if you were over in the cardiac side of this hospital all the drs would tell you to stay away from things that will make you fat. Here we encourage it. I sure do hope that this helps. Keep in touch.

wow, 75 pounds my husband would be dead!!
Court_Ren, it sounds like your husband can't eat solid food? has he been like that the whole time?
My husband's legs are fairly strong, that's the only thing that came back (I mean they're still horribly skinny)

I will definitely use the whey protein. That's awesome that he gained so much weight 11 pounds is HUGE...
He's had 14 treatments, does he still have cancer bothering him?

Court_Ren

Guigna said:

wow, 75 pounds my husband would be dead!!
Court_Ren, it sounds like your husband can't eat solid food? has he been like that the whole time?
My husband's legs are fairly strong, that's the only thing that came back (I mean they're still horribly skinny)

I will definitely use the whey protein. That's awesome that he gained so much weight 11 pounds is HUGE...
He's had 14 treatments, does he still have cancer bothering him?

No he can eat solid food,
No he can eat solid food, bread doesn't go so well for him. He was just so sick that he couldn't eat. The chemo side effects were bad for eating with the first chemo 5fu, and pain pills, now it's the leg pain with this chemo taxotere. His cancer has spread to his lungs. He won't ever be rid of the cancer. They didn't catch it in time. He just wants to make it to 40, I am not sure how long I have him for.

TerryV

I'm pleased your docs are positive
Guigna,

I'm very happy to understand that your DH's Rads Onc has a positive outlook for his next rounds of treatment.

I have heard that post surgery chemo is difficult. I know hydration helps many as they go through chemo. The suggestion of whey proteins is great as well. Anything to help him maintain as he travels this path.

Others that are on the same "page" as you and your husband will stop by with additional suggestions. Please know we are here for you.

With hugs,

Terry

TerryV

duplicate
silly forum software

Guigna

TerryV said:

I'm pleased your docs are positive
Guigna,

I'm very happy to understand that your DH's Rads Onc has a positive outlook for his next rounds of treatment.

I have heard that post surgery chemo is difficult. I know hydration helps many as they go through chemo. The suggestion of whey proteins is great as well. Anything to help him maintain as he travels this path.

Others that are on the same "page" as you and your husband will stop by with additional suggestions. Please know we are here for you.

With hugs,

Terry

positive doctors are scary too
We know the stats on this nasty beast. I did ask one doctor, so is this it, every cat scan is going to show more nasties? HE said, "yes that is a possibility. But it's also a possibility that once we get through this cycle, it's all cleared up."

You know, the one doctor when we first met him was a great statistician. everything was odds. Well somewhere during that long hospital stay, I got really tired of the odds, because my DH always got the wrong odds. How unlucky can you get? the only "lucky" thing he's had so far was that he's positive for Herceptin, (only 14% of the population is) so he gets that too. Once every 3 weeks. And it has no apparent side effects. It also has no apparent effect on the cancer. But I was told "it's too soon to tell"

It breaks my heart to watch what this disease, and its cure has done to my dear husband.. every day is different. WE never know. One day he's in pain, the next day he's not. One day he's nauseated, the next day, it's diarrhea. One weekend is glorious, the next is hell. I NEVER know.
the randomness of this whole thing is so frightening.

Court_ren, that is so tough, your husband is so young. It's so strange. I look at my husband the same way. He's 61, i think, oh, he's so young! WE were going to get old together. Now I am not so sure that that will happen. We thought he had another good 20 years. Now he's not so sure he's going to be here next year. That's tough stuff, no matter what your age.

BobHaze

Court_Ren said:

I am sorry to hear this. My
I am sorry to hear this. My husband has stage four EC. I tend to trick him. I put Whey Protein in his shakes. I make smoothies with fruit, ice cream, whole whipping cream, ice cream, and ensure. If you mask it with banana they don't even know it's in there. He gained 11 lbs in 9 days, and it wasn't water weight. It has been hard for me too. I watched him loose almost 75 lbs in 6 months. I make him drink the ensure, and he keeps up with gatorade, and juice. He is slowly building some muscle back up, but is so weak in the legs, and arms that it is hard to get that back. We bought an eliptical, and with all of the whey protein that he has been getting in his shakes, it helps to build your muscles back. He has had a total of 14 treatments. Two different kinds of chemo. 5FU, and taxotere, and taxotere by far is the worse for pain, but 5FU is what took all of his weight. If there is anything else that I can think of I will let you know. It was sort of funny. My husbands oncologist said to him the other day if you were over in the cardiac side of this hospital all the drs would tell you to stay away from things that will make you fat. Here we encourage it. I sure do hope that this helps. Keep in touch.

Beware of sugar
Guigna:

You say both that DH is Stage 4 and post-surgery, so I don't know if that was an esophagectomy or another surgery. My comments relate only to post-esophagectomy.

My only caution about Court_Ren's suggestions is that after an esophagectomy, regardless of which procedure is used (THE, MIE, etc.) sugar becomes extremely problematic and most of us have found it needs to be carefully avoided, or at least significantly moderated. I used to be both a chocaholic and a devourer of ice cream, and since my MIE I’ve had terrible experiences with both and the only ice cream I can eat is sugar-free. I can have a very little chocolate from time to time but ONLY after eating something else, or I get intestinal cramps so intense I can’t walk for at least an hour and it feels like someone is stabbing me with a knife. That lasts about an hour, and diarrhea is not far behind. I’ve had similar problems with shakes made with Carnation Instant Breakfast, and I’ve read on this board of others who warn about Ensure, Boost, etc., because they all have lots of sugar in them. Those products are great for folks with a normal stomach, but not post-esophagectomy.

It does become a challenge to find high-calorie foods and drinks and at the same time avoid sugars, but we have to do it because maintaining weight after the surgery becomes a lot of work. It can be done, but unfortunately pretty much everyone has to work out what works well for them by trial and error, and the error part can be very uncomfortable.

Good luck with this. It sounds from your posts that DH is lucky to have a loving caregiver who is willing to reach out for help and advice.

Bob
T1aN0M0
Dx 8/3/11
MIE 9/23/11

Guigna

BobHaze said:

Beware of sugar
Guigna:

You say both that DH is Stage 4 and post-surgery, so I don't know if that was an esophagectomy or another surgery. My comments relate only to post-esophagectomy.

My only caution about Court_Ren's suggestions is that after an esophagectomy, regardless of which procedure is used (THE, MIE, etc.) sugar becomes extremely problematic and most of us have found it needs to be carefully avoided, or at least significantly moderated. I used to be both a chocaholic and a devourer of ice cream, and since my MIE I’ve had terrible experiences with both and the only ice cream I can eat is sugar-free. I can have a very little chocolate from time to time but ONLY after eating something else, or I get intestinal cramps so intense I can’t walk for at least an hour and it feels like someone is stabbing me with a knife. That lasts about an hour, and diarrhea is not far behind. I’ve had similar problems with shakes made with Carnation Instant Breakfast, and I’ve read on this board of others who warn about Ensure, Boost, etc., because they all have lots of sugar in them. Those products are great for folks with a normal stomach, but not post-esophagectomy.

It does become a challenge to find high-calorie foods and drinks and at the same time avoid sugars, but we have to do it because maintaining weight after the surgery becomes a lot of work. It can be done, but unfortunately pretty much everyone has to work out what works well for them by trial and error, and the error part can be very uncomfortable.

Good luck with this. It sounds from your posts that DH is lucky to have a loving caregiver who is willing to reach out for help and advice.

Bob
T1aN0M0
Dx 8/3/11
MIE 9/23/11

no more esophagus
that's right, no more esophagus. But he seems to do pretty well with sugar.
We did hear, however that CANCER loves sugar and that he should avoid it. That won't be easy, like you said.

Every day is different, cancer is nothing if not chaotic... Right now, we're grieving the loss of the 3 pounds he put on post surgery, and then 3 more. in just 1 week!

Bob, did they take your gall bladder? they were going to take my DH's gallbladder "just because" and at the last minute they left it in. THANK GOODNESS because that would have made the ingestion of fat problematic tooo.

Unknown

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Guigna

unknown said:

This comment has been removed by the Moderator

scans
he had a scan about 3 weeks ago, which is why he's in chemo and radiation now.
Three different doctors looked at that pet scan and at the bone scan.

he has a little one the "dust" on his skull, and some glowing areas on his ribs which might be old injuries, but the radiological oncologist called them "dust" too. The "dust" that chemo would blow away.
The only significant one is the one on his iliac crest, 1" in diameter. He's on his 2nd week of radiation now, and the pain is changing. it's very responsive to radiation...

I hear both directions about the j-tube, to keep it in or "you don't gain weight from a j-tube"
so I wonder.


The reason he had the surgery is that he was so damned strong and there was just the one lymph node involved.. we did get a second opinion about that from another surgeon, and he was ready to cut too. The Onco guy didn't think surgery was a good idea.
Today i wish he hadn't had the surgery (because of the life draining effects of the complications he had), but i don't waste too much energy going THERE. What is, is..

BobHaze

Guigna said:

no more esophagus
that's right, no more esophagus. But he seems to do pretty well with sugar.
We did hear, however that CANCER loves sugar and that he should avoid it. That won't be easy, like you said.

Every day is different, cancer is nothing if not chaotic... Right now, we're grieving the loss of the 3 pounds he put on post surgery, and then 3 more. in just 1 week!

Bob, did they take your gall bladder? they were going to take my DH's gallbladder "just because" and at the last minute they left it in. THANK GOODNESS because that would have made the ingestion of fat problematic tooo.

No gall bladder-ectomy
There never was any mention of touching my gall bladder, just the esophagectomy and 28 lymph nodes, all of which came back "clean" (Thank God!!!). This is the 1st time I've heard of them taking a gall bladder "just because" - sounds weird to take any organ out that's working properly!

Bob

Guigna

BobHaze said:

No gall bladder-ectomy
There never was any mention of touching my gall bladder, just the esophagectomy and 28 lymph nodes, all of which came back "clean" (Thank God!!!). This is the 1st time I've heard of them taking a gall bladder "just because" - sounds weird to take any organ out that's working properly!

Bob

i agree
However, I do know of one (really skinny) guy who had the gallbladder removed with his pullup. He has all kinds of issues even though he is cancer free 7 years later.
He only had stage 1..

Unknown

Guigna said:

scans
he had a scan about 3 weeks ago, which is why he's in chemo and radiation now.
Three different doctors looked at that pet scan and at the bone scan.

he has a little one the "dust" on his skull, and some glowing areas on his ribs which might be old injuries, but the radiological oncologist called them "dust" too. The "dust" that chemo would blow away.
The only significant one is the one on his iliac crest, 1" in diameter. He's on his 2nd week of radiation now, and the pain is changing. it's very responsive to radiation...

I hear both directions about the j-tube, to keep it in or "you don't gain weight from a j-tube"
so I wonder.


The reason he had the surgery is that he was so damned strong and there was just the one lymph node involved.. we did get a second opinion about that from another surgeon, and he was ready to cut too. The Onco guy didn't think surgery was a good idea.
Today i wish he hadn't had the surgery (because of the life draining effects of the complications he had), but i don't waste too much energy going THERE. What is, is..

This comment has been removed by the Moderator

Guigna

unknown said:

This comment has been removed by the Moderator

thank you!
Oh Thanks Bailey!!