Opinions on treatment

Wpturner05

I need your thoughts, experiences and opinions - please speak freely about them . . . .

Last November, my husband was diagnosed with stage 3 EC. He underwent induction chemo, chemo/radiation and was supposed to have surgery in April. At the end of March, his preop PET showed mets to both lobes of the liver. He spent the next few months on failed chemos and in August and September had each lobe of his liver infused with SIR-spheres (many of you know it as therasphers). Since the end of August he has lost 20 pounds, hardly wants to eat, fatigue and pain has ruled his days. It has been difficult to say the least - as many of you can easily relate.

Anyway, last Tuesday we went to the local emergency room because his pain was so severe - he was not able to make the drive to his treating facility because it is an hour away. The ER gave him IV pain meds, stabilized him and contacted his oncology group who said to send him home and to call the office in the morning. On Wednesday, I called and they wanted to direct admit him to the hospital - he said no On Thursday, he went in for an MRI of the abdomen and CATscans of the chest, abdomen and pelvis - these had been scheduled back in September as a follow up to check how he was responding to the SIR-spheres. We went in on Friday for a scheduled appointment with his oncologist who took one look at him and said - "I am admitting you." We just got home today - He received IV fluids since Friday, was seen by GI and palliative care and had an overhaul of his medications and left feeling better.

Long winded story, I know. This is where we need stories and experiences. . . The CATscans showed that the SIR-spheres worked on the liver - PRAISE GOD. His doctor said that if it did not work, he would not have made it to Christmas. Well, now the lungs have 30-40 spots. (Side note - his PETscan on August 17th was clear except for the liver) This cancer is an out of control freight train . . . . At the appointment, his doctor started to throw out options and I said "STOP! - Enough! - He needs to feel better and when our hearts and head can handle this, we will talk about options, You will not do treatment as long as he is even remotely like this." His doctor was awesome - He stopped immediately and said he understood and got him moving to the hospital. We go back on Friday to see his doctor and talk about all of the options at this point. Do we move forward with anything? Really? His doctor said that he has seen people live 6 months and longer with disease in the lungs like this - but at what cost? We have 2 kids and my husband has been robbed of almost 2 months of life with them already. He barely has enough energy to do anything with them. Is it time to call in Hospice and stop all treatment? If we go on treatment (he won't go on chemo) is it worth it? Has anyone else had a similiar story?

What to do? We feel like we may have come to the point in this journey where we stop fighting the cancer and start fighting to regain his life - for however long that may be . . .

Sincerely,
Whitney
wife of Kevin
stage IVb

jojoshort

Hi Whitney
I am so sorry for your troubles, but understand completely how you are feeling. My husband, also a Stage IVb had mets to lungs. His chemo treatment only "paused" the cancer, and when chemo became unbearable, he stopped treatment. He survived 11 months from diagnosis as an esophageal cancer patient.

There is a good thread here about when to consider stopping chemo--I will search for it and post it here when I find it. Some Stage IV's find good responses with chemo with manageable side effects. Some don't. Certainly you should have a second opinion at a major cancer center, where all the latest and greatest ideas can be presented to you if they are a good possibility.

Unfortunately, none of us has that magic crystal ball, telling us who will respond well to chemo and who will not. That is the patient's choice, but an informed choice it should be. Hence the mantra of "second opinion" at a major cancer center.

It would be helpful if you could relate to the board what the initial chemo treatment was.
Keep digging for info,
Jo-Ann
I found the thread but have a new computer and don't know how to copy and paste with a MAC,...it's under
Here we go again (or maybe not)

from September of 2011.

Wpturner05

jojoshort said:

Hi Whitney
I am so sorry for your troubles, but understand completely how you are feeling. My husband, also a Stage IVb had mets to lungs. His chemo treatment only "paused" the cancer, and when chemo became unbearable, he stopped treatment. He survived 11 months from diagnosis as an esophageal cancer patient.

There is a good thread here about when to consider stopping chemo--I will search for it and post it here when I find it. Some Stage IV's find good responses with chemo with manageable side effects. Some don't. Certainly you should have a second opinion at a major cancer center, where all the latest and greatest ideas can be presented to you if they are a good possibility.

Unfortunately, none of us has that magic crystal ball, telling us who will respond well to chemo and who will not. That is the patient's choice, but an informed choice it should be. Hence the mantra of "second opinion" at a major cancer center.

It would be helpful if you could relate to the board what the initial chemo treatment was.
Keep digging for info,
Jo-Ann
I found the thread but have a new computer and don't know how to copy and paste with a MAC,...it's under
Here we go again (or maybe not)

from September of 2011.

chemos used
Induction chemo and chemo radiation was irinotecan and cisplatin. Once the liver mets were found he went on oxaliplatin and xeloda, when that failed, he went to taxotere - which also failed.

Kevin's care has been primarily directed by Memorial Sloan Kettering in New York - our local oncologist will be in contact with them this week before our appointment on Friday. I know there is a targerted drug called sorafenib that both docs were considering. We will probably be heading up to MSKCC the following week.

I think you are talking about the Mayo piece on when to stop treatment? I have remembered seeing that and hope to see it again. . . I don't know how to search for posts

Wpturner05

jojoshort said:

Hi Whitney
I am so sorry for your troubles, but understand completely how you are feeling. My husband, also a Stage IVb had mets to lungs. His chemo treatment only "paused" the cancer, and when chemo became unbearable, he stopped treatment. He survived 11 months from diagnosis as an esophageal cancer patient.

There is a good thread here about when to consider stopping chemo--I will search for it and post it here when I find it. Some Stage IV's find good responses with chemo with manageable side effects. Some don't. Certainly you should have a second opinion at a major cancer center, where all the latest and greatest ideas can be presented to you if they are a good possibility.

Unfortunately, none of us has that magic crystal ball, telling us who will respond well to chemo and who will not. That is the patient's choice, but an informed choice it should be. Hence the mantra of "second opinion" at a major cancer center.

It would be helpful if you could relate to the board what the initial chemo treatment was.
Keep digging for info,
Jo-Ann
I found the thread but have a new computer and don't know how to copy and paste with a MAC,...it's under
Here we go again (or maybe not)

from September of 2011.

chemos used
Induction chemo and chemo radiation was irinotecan and cisplatin. Once the liver mets were found he went on oxaliplatin and xeloda, when that failed, he went to taxotere - which also failed.

Kevin's care has been primarily directed by Memorial Sloan Kettering in New York - our local oncologist will be in contact with them this week before our appointment on Friday. I know there is a targerted drug called sorafenib that both docs were considering. We will probably be heading up to MSKCC the following week.

I think you are talking about the Mayo piece on when to stop treatment? I have remembered seeing that and hope to see it again. . . I don't know how to search for posts

NikiMo

Wpturner05 said:

chemos used
Induction chemo and chemo radiation was irinotecan and cisplatin. Once the liver mets were found he went on oxaliplatin and xeloda, when that failed, he went to taxotere - which also failed.

Kevin's care has been primarily directed by Memorial Sloan Kettering in New York - our local oncologist will be in contact with them this week before our appointment on Friday. I know there is a targerted drug called sorafenib that both docs were considering. We will probably be heading up to MSKCC the following week.

I think you are talking about the Mayo piece on when to stop treatment? I have remembered seeing that and hope to see it again. . . I don't know how to search for posts

Second opinion
Hi Whitney,

I am sorry you are being faced with these difficult decisions. I think that Joann has offered sound advice about seeking a second opinion. With a decision like this I think you owe yourselves at least a second opinion a new set of eyes to the case, you will then know you have sought out the information you need to make such a large decision. I believe you had stated earlier that you are in Berks county. I also know you said you have already consulted with MSKCC. Jeff is treated by an excellent oncologist at the University of Pennsylvania, Dr. Weijing Sun. He is honest and straight forward and he really does care about Jeff as a patient. If you are looking for a second opinion I think he would be an excellent choice, he is close, a Philadelphia top doctor, and is the associate director of the hematology/oncology department. I can't offer much guidance in terms of the emotional side of having to make this decision, but I did want to share with you our doctor's name.

I am sending you hugs from far away (not that far really!)

Niki

Daisylin

Wpturner05 said:

chemos used
Induction chemo and chemo radiation was irinotecan and cisplatin. Once the liver mets were found he went on oxaliplatin and xeloda, when that failed, he went to taxotere - which also failed.

Kevin's care has been primarily directed by Memorial Sloan Kettering in New York - our local oncologist will be in contact with them this week before our appointment on Friday. I know there is a targerted drug called sorafenib that both docs were considering. We will probably be heading up to MSKCC the following week.

I think you are talking about the Mayo piece on when to stop treatment? I have remembered seeing that and hope to see it again. . . I don't know how to search for posts

Hi Whitney,
Well, I'm so very sorry to hear about Kevin's mets to the lungs. Making the decision to stop or continue chemo is probably the hardest thing you will ever have to do as a couple. Lee and I agonized over it for months.

In our situation, Lee was diagnosed right off the bat with mets to the liver (about 15 spots, both lobes) We were not given any options for surgery or radiation. We asked about therespheres, but the doctor said no. (looking back, I think he had no clue what we were talking about, it's only offered in 2 cities in the entire country here in Canada, so perhaps he'd never heard of it) Anyways, when he began chemo, he did 4 rounds, and had many side effects. In the end, it seemed to have paid off, as the tumours had shrunk. The doctor recommended a break, and re-scan in a few months. For the first month, Lee felt great, gained some weight and had lots of energy and optimism.

Starting during the second break month, Lee totally lost his appetite, started being nauseated, hot and cold flashes and just plain miserable. We went back to the doctor and were sent for another scan. We also asked for a feeding tube (for the second time) and said he didn't need it. We discovered from the scan that the cancer was back, and relentless. The liver mets had grown by 50%, the esophagus had thickened, more lymph nodes, spleen and possible gall bladder involvement. He decided to go back on chemo... During this time, while waiting for the chemo appointment, he continued to lose weight, and have all those miserable symptoms. He went for chemo as scheduled at the end of August, and was so weak and miserable, he just could not tolerate any more agony. At this point, we called and demanded a feeding tube. Finally they agreed, and he was taken off chemo for a week. During this time, Lee made the final decision, no more chemo. The feeding tube did help with maintaining his weight, but he's still not really had any quality. Now we've found out that there are more mets, to the spine and ribs.

Lee has never regretted his decision. I think we both agreed, that for him, it just wasn't worth the suffering. He did not see much point prolonging his grief with little chance for quality time. With small children at home, I can see how this decision could be even more agonizing. Only Kevin can make this choice, and hopefully, whatever he decides, it enables him to have some quality time with you and your children.

Chantal

Unknown

Daisylin said:

Hi Whitney,
Well, I'm so very sorry to hear about Kevin's mets to the lungs. Making the decision to stop or continue chemo is probably the hardest thing you will ever have to do as a couple. Lee and I agonized over it for months.

In our situation, Lee was diagnosed right off the bat with mets to the liver (about 15 spots, both lobes) We were not given any options for surgery or radiation. We asked about therespheres, but the doctor said no. (looking back, I think he had no clue what we were talking about, it's only offered in 2 cities in the entire country here in Canada, so perhaps he'd never heard of it) Anyways, when he began chemo, he did 4 rounds, and had many side effects. In the end, it seemed to have paid off, as the tumours had shrunk. The doctor recommended a break, and re-scan in a few months. For the first month, Lee felt great, gained some weight and had lots of energy and optimism.

Starting during the second break month, Lee totally lost his appetite, started being nauseated, hot and cold flashes and just plain miserable. We went back to the doctor and were sent for another scan. We also asked for a feeding tube (for the second time) and said he didn't need it. We discovered from the scan that the cancer was back, and relentless. The liver mets had grown by 50%, the esophagus had thickened, more lymph nodes, spleen and possible gall bladder involvement. He decided to go back on chemo... During this time, while waiting for the chemo appointment, he continued to lose weight, and have all those miserable symptoms. He went for chemo as scheduled at the end of August, and was so weak and miserable, he just could not tolerate any more agony. At this point, we called and demanded a feeding tube. Finally they agreed, and he was taken off chemo for a week. During this time, Lee made the final decision, no more chemo. The feeding tube did help with maintaining his weight, but he's still not really had any quality. Now we've found out that there are more mets, to the spine and ribs.

Lee has never regretted his decision. I think we both agreed, that for him, it just wasn't worth the suffering. He did not see much point prolonging his grief with little chance for quality time. With small children at home, I can see how this decision could be even more agonizing. Only Kevin can make this choice, and hopefully, whatever he decides, it enables him to have some quality time with you and your children.

Chantal

This comment has been removed by the Moderator

fredswilma

Hi Whitney
It seems like we
Hi Whitney
It seems like we are on a similar journey, with devastating decisions and options that well really aren't options at all. Mark is also not responding to Chemo, his second line and we are awaiting results of his scan just to verify initial findings.
We put the scan off and took control, (that felt so good, not letting the cancer and docs rule our decision making) Mark and our boys went away for a boys week you know fishing, snow planet etc and I know that our boys will treasure that memory forever.
I wanted to share this with you cause I think there is a point that you have to choose life, and that does not mean giving up on hope, it means saying Chemo's not working why put someone's body through all that when the cancer is, as you put it, an out of control freight train.
I would suggest on Friday when you see your Onc, listen to all options, do not make any decisions on the spot then spend the weekend researching all suggestions, weighing up the pros and cons. I think sometimes we make the biggest decisions at times of stress without the right information and something I have learnt along the way is to slow down take another day if possible.
I will be thinking of you.
Ann