Oriontj's post yesterday made me gasp...at first... but still offers hope

Callaloo

It's not that I haven't felt just as bad for everyone else here who has posted about disappointing results, but, you see, Oriontj's April 2, 2010, post, which I printed out and taped to my wall nine months ago, is the first one I read after I was finally, officially, staged IVB (on April 1st – haha), incurable and inoperable, squamous cell carcinoma, with mets to the nodes, including under the clavicle, just like her husband. She said “ct scans showed no cancer anywhere”, and told me there was hope for Stage IV. I began treatment 3 days later with some optimism.

I didn't visit this site again for several months after that. Radiation ended in May and I had my last chemo session the end of June, and then just before my first post-treatment scan in August, I was full of apprehension, and checked this forum in the hope of finding some good news, and whataya know, Oriontj posts on Aug. 6 that latest scan again showed no cancer. And my scan a week later was also good. So I continued to feel some special connection.

And even now with the latest news that “Tom's cancer is back”, beyond the obvious disappointment that I and everyone here feels for Jan and Tom, beyond my initial shock and the reality-check on my own situation, I am reminded and reassured that, at least for some of us, Stage IVB is a treatable and manageable disease, even if it's not curable.

I'd like offer my own form of hope and optimism, just like Oriontj gave me, to those newly diagnosed with Stage IVB. Of course, my story does not offer hope of a cure, but I can say unequivocally that there is life after a IVB diagnosis. And in my case, it continues to be a good life.

I am fortunate because I have not shared many of the devastating effects of this disease that so many on this forum have. Aside from the normal side effects of chemoradiation (don't get me wrong – it was bad, nearly intolerable), I have not required a feeding tube or stent, I don't have problems with swallowing or eating, or bleeding or pain, or any of the other problems associated with surgery. In fact, I don't have any on-going medical problems at the moment and haven't had any since chemo ended 6 months ago.

In some ways, I think being inoperable was a blessing in disguise.

I did a lot of traveling in August to visit far-flung family before going back to work full time in September. We have just celebrated the holidays with the same excess we always have, surrounded by family and friends and lots of love, warmth, laughter, food and drink. Next month, we're going to the Caribbean for a couple weeks, for the vacation that we canceled last April.

I am mindful that many on this forum have not been doing well, and so many have been taken by this disease even in the short time I have been visiting. But I want to let the newly diagnosed out there know that it is not all debilitation and pain, that a return to a normal life is not out of the question. As we approach the new year, I am grateful for the renewed life that I have, and I am looking forward to enjoying the months to come.

I don't mean to sugar-coat this. It's a tough adjustment to think of your life in terms of months and not years, and I can't even begin to describe the disappointment and heartbreak I feel when it occurs to me that I most likely will never know my grandchildren. But the initial sense of fear and hopelessness has subsided, and I find some joy and contentment in every day.

And when I read a post like Oriontj's last one, I am (perversely?) excited about the fact that her husband is starting a new treatment regimen. I hope Jan posts some details about it and keeps us updated on Tom's progress. There is no standard second line treatment for stage 4 EC, and very little information on squamous cell carcinoma in particular, so every little bit helps. I can't say I'm in "remission", but I am stable for the time being, and realistic about how short-lived this period can be, so I will continue to follow every post she makes.

I wish Jan and Tom and everyone else here a better new year.

Donna70

thanks for this post
Hi,
Thanks for this post because it does show there is hope out there. Right now I am in remission from squamous cell T3N1MO and post esophagectomy and post surgery chemo. I know that it could come back and there are not many squamous cell people out there very few in fact. So, your info and combined with Tom still getting chemo with a recurrence gives hope to all of us. Some will be lucky and not get it again but there are always those who will have to battle it again. I am glad you are living your life and going forward and hope that you have much time given to you. I will keep all of you in my prayers. thanks for giving us this story of hope. take care,
Donna70

oriontj

I'll keep you all informed
Like I said...it's a matter of when not if...but that doesn't mean there isn't a plan B. Like you once the chemo and radiation were over and his strength came back...we went all over...learning to live in the NOW isn't always easy because some times NOW just plain sucks. There's a lot of research for squamous since it was the most common form. There's trials for it...

And I'm totally gratefull he didn't spend months recovering from a surgery only to have it resurface soon after. He doesn't want any surgery and as most of you know, he does exactly what he wants in this regard. That hasn't changed.

So we'll just see what happens.

Meanwhile, keep your spirits high and do anything darn thing you want to do...enjoy your health now and let tomorrow take care of itself..it always does.

And as I say try not to get hit by a truck...

Happy New Year

jan

sal314

Thank You for Your Post
My father's situation is very much like yours. He was diagnosed in March of 2010 with stage IVB. Chemo wasn't easy, and besides some complications here and there, he made it through. Ever since then has gotten stronger, fatter and has gone on with life as he always has. He has no problems eating or swallowing and has gained the weight he lost on chemo plus some. He's feeling so well he and my mom took a trip to San Diego to ring in the New Year:)

Needless to say, we are all grateful for the fact that we were able to spend Christmas with him around. Honestly, when all this went down in March, we didn't think he'd be around for more than a couple of months. Yet here we are. Goes to show you...what do we know? LOL.

That being said, it's still very hard to live in the moment and not think of all the sadness that is down the road ahead. We all know his condition will eventually start to slide and that's hard to ignore, especially for my mother. But...it just reminds us to be thankful and make the most of every day! That in itself is a blessings.

Wishing and praying for continued good health for you. Keep livin' and fighting!

Blessings,
Sally

Callaloo

Donna70 said:

thanks for this post
Hi,
Thanks for this post because it does show there is hope out there. Right now I am in remission from squamous cell T3N1MO and post esophagectomy and post surgery chemo. I know that it could come back and there are not many squamous cell people out there very few in fact. So, your info and combined with Tom still getting chemo with a recurrence gives hope to all of us. Some will be lucky and not get it again but there are always those who will have to battle it again. I am glad you are living your life and going forward and hope that you have much time given to you. I will keep all of you in my prayers. thanks for giving us this story of hope. take care,
Donna70

Squamous cell
Yes, I know there aren't many of us. In fact, besides you and Tom, the only other one that I know of (and believe me, I have scoured this board for squamous cell posts!) since I've been here is Hope2010 who sadly posted just a few days ago that her husband, also stage 4, passed away in October.

I read recently that because squamous cell carcinoma is on the decline in western Europe and the US, there is declining interest in certain clinical trials focusing strictly on squamous cell. I hope that isn't true. So even though I haven't posted much, I have read everything you've posted, and I have silently cheered all your good news. Keep up the good work and thanks for your good thoughts!

ChiefTom

Not giving up hope
My husband (also named Tom) has stage IVB squamous cell EC, too. He was diagnosed in 06/2010. His oncologist told us last week that he is in complete remission. He had a repeat EGD which showed no evidence of cancer. He also stated that it could last one month, one year, two years? There is no way of knowing. He will continue with the same chemo.

Tom has no symptoms, whatsoever. We know that we are truly blessed. We are Catholic and our faith has really been strengthened throughout this ordeal.

So please don't give up hope.

Sincerely,
Liz

Callaloo

sal314 said:

Thank You for Your Post
My father's situation is very much like yours. He was diagnosed in March of 2010 with stage IVB. Chemo wasn't easy, and besides some complications here and there, he made it through. Ever since then has gotten stronger, fatter and has gone on with life as he always has. He has no problems eating or swallowing and has gained the weight he lost on chemo plus some. He's feeling so well he and my mom took a trip to San Diego to ring in the New Year:)

Needless to say, we are all grateful for the fact that we were able to spend Christmas with him around. Honestly, when all this went down in March, we didn't think he'd be around for more than a couple of months. Yet here we are. Goes to show you...what do we know? LOL.

That being said, it's still very hard to live in the moment and not think of all the sadness that is down the road ahead. We all know his condition will eventually start to slide and that's hard to ignore, especially for my mother. But...it just reminds us to be thankful and make the most of every day! That in itself is a blessings.

Wishing and praying for continued good health for you. Keep livin' and fighting!

Blessings,
Sally

Good to hear your father is doing well
Of course people have a tendency to post only when things start going side-ways that you come to think that's all there is. But it isn't all about the "slide", as you call it. Be happy for your parents that he is doing well. This is good news for all of us.

I have a son who looks to be about your age (assuming that's your photo). I don't want him to be sad for me or his dad or himself. Not now. This is not the time for that. It would take away some of the tremendous joy I have in knowing that he has a happy and fulfilling life of his own.

I say leave the future where it belongs and may you and your family continue to have a good life.

Callaloo

Wonderful news about your husband ChiefTom
It gives us all hope. Would you mind sharing what kind of chemo is he on? Like Donna70 said, there aren't many on this board with squamous cell and it's my understanding this cancer is treated a little differently, so it's good to get some specifics for comparison. For example, as Jan pointed out, Herceptin has not been recommended as a treatment option for squamous cell, whereas it is for adenocarcinoma.

I had Cisplatin with 5FU on a 96-hour pump, 4 rounds, about 21 days apart, the first 2 rounds concurrently with 28 radiation treatments, then 2 more rounds of chemo after the radiation ended. I had to have Neulasta injections before the last 2 chemo rounds because my WBC count was too low. The Neulasta boosted the white blood cell production and enabled me to continue the chemo with only a one-week delay.

My oncologists won't use the term "remission". My tumors all shrank (shrunk?) except one, which has not grown between the last 2 CT scans, and that was a node that was never physically biopsied and wasn't picked up in an early PET scan, so it's always been questionable. I chose not to do an EGD after treatment ended because I just didn't want to go through another procedure at that point and it would not have ruled out cancer elsewhere anyway. Perhaps I should have had it done. But I was, and still am, so happy to be through with treatment.

Thanks for giving us some good news, Liz.

ChiefTom

Callaloo said:

Wonderful news about your husband ChiefTom
It gives us all hope. Would you mind sharing what kind of chemo is he on? Like Donna70 said, there aren't many on this board with squamous cell and it's my understanding this cancer is treated a little differently, so it's good to get some specifics for comparison. For example, as Jan pointed out, Herceptin has not been recommended as a treatment option for squamous cell, whereas it is for adenocarcinoma.

I had Cisplatin with 5FU on a 96-hour pump, 4 rounds, about 21 days apart, the first 2 rounds concurrently with 28 radiation treatments, then 2 more rounds of chemo after the radiation ended. I had to have Neulasta injections before the last 2 chemo rounds because my WBC count was too low. The Neulasta boosted the white blood cell production and enabled me to continue the chemo with only a one-week delay.

My oncologists won't use the term "remission". My tumors all shrank (shrunk?) except one, which has not grown between the last 2 CT scans, and that was a node that was never physically biopsied and wasn't picked up in an early PET scan, so it's always been questionable. I chose not to do an EGD after treatment ended because I just didn't want to go through another procedure at that point and it would not have ruled out cancer elsewhere anyway. Perhaps I should have had it done. But I was, and still am, so happy to be through with treatment.

Thanks for giving us some good news, Liz.

Chemo
Tom's chemo from the start has been Cisplatin and Irinotecan. It is once per week for two weeks, then one week off. Every six weeks he gets zometa for the bone mets. So far, he is responding. The reason he had the EGD again was the PET scan showed inflammation (possibly) in the esophagus. The gastro dr said it looked much, much (5X) better than it did in June. There was esophagitis present, but no cancer on all the biopsies. Told him to take prevacid 30mg. Unfortunately, Tom's platelets have been low for two weeks, so the onc wants him to stop the prevacid.

The onc said he wants to continue the same treatment. He did say that he has an 85yo patient with a similar cancer who has stopped all chemo because he has other health problems. The gentleman is still in remission after two yrs! I thought that was encouraging!

Unfotunately, Tom is having some issues with peripheral neuropathy, but it is just an annoyance right now. The cold weather probably doesn't help. He also has a slight hearing loss, but it may be selective. Ha-ha. So, like I said, we have been very blessed.

oriontj

Callaloo said:

Wonderful news about your husband ChiefTom
It gives us all hope. Would you mind sharing what kind of chemo is he on? Like Donna70 said, there aren't many on this board with squamous cell and it's my understanding this cancer is treated a little differently, so it's good to get some specifics for comparison. For example, as Jan pointed out, Herceptin has not been recommended as a treatment option for squamous cell, whereas it is for adenocarcinoma.

I had Cisplatin with 5FU on a 96-hour pump, 4 rounds, about 21 days apart, the first 2 rounds concurrently with 28 radiation treatments, then 2 more rounds of chemo after the radiation ended. I had to have Neulasta injections before the last 2 chemo rounds because my WBC count was too low. The Neulasta boosted the white blood cell production and enabled me to continue the chemo with only a one-week delay.

My oncologists won't use the term "remission". My tumors all shrank (shrunk?) except one, which has not grown between the last 2 CT scans, and that was a node that was never physically biopsied and wasn't picked up in an early PET scan, so it's always been questionable. I chose not to do an EGD after treatment ended because I just didn't want to go through another procedure at that point and it would not have ruled out cancer elsewhere anyway. Perhaps I should have had it done. But I was, and still am, so happy to be through with treatment.

Thanks for giving us some good news, Liz.

Ours won't use remission either
Actually said...the word is out of date...Tom had no tumors...they were gone not just shrunk...but this cancer comes back...who knows when or why it does...as long as you can beat it back a bit...and still enjoy yourself that's the thing...

The only reason Tom had the EUS was because of a slight thickening of the esophagus wall...the ultra sound endoscope is what they use in Chicago...our local hospital doesn't have it..

As I've said before, he'll do exactly what he chooses to do...no imput on it at all...learned that a long time ago...oh well.

Meanwhile we go on...we'll see what this new cocktail brings...and not worry much about the future...because for some funny reason it's future after future after future...can miss a lot of Now worrying about it and we can't change it at all..I know I'm the worrier and it hasn't changed it at all.

Off to watch a movie.

jan

Unknown

oriontj said:

Ours won't use remission either
Actually said...the word is out of date...Tom had no tumors...they were gone not just shrunk...but this cancer comes back...who knows when or why it does...as long as you can beat it back a bit...and still enjoy yourself that's the thing...

The only reason Tom had the EUS was because of a slight thickening of the esophagus wall...the ultra sound endoscope is what they use in Chicago...our local hospital doesn't have it..

As I've said before, he'll do exactly what he chooses to do...no imput on it at all...learned that a long time ago...oh well.

Meanwhile we go on...we'll see what this new cocktail brings...and not worry much about the future...because for some funny reason it's future after future after future...can miss a lot of Now worrying about it and we can't change it at all..I know I'm the worrier and it hasn't changed it at all.

Off to watch a movie.

jan

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