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6-9 months please help

mockingbird's picture
mockingbird
Posts: 3
Joined: Aug 2013

My husband was diagnosed last October with head and neck cancer. Mid. November he started his 7 week radiation and 3 chemo treatments. April 1st he had a pet and cat scan to see if the stage 4 cancer, tumors had been successfully removed, and they were, but to find a new tumor growing in T12 of his spine. The Dr. at that time said its terminal. We have less than a year....

End of June he had cyber knife done on the tumor. After the 5 day treatment he had another scan. This time they found 3 more tumors in the spine and dozens of “spots” in the lungs that looked to be cancer, but too small to biopsy.  At this time we are given 6-9 months survival time, with more chemo treatments of carboplatin/5FU/cetuximab on a 3week cycle.

My questions are,

If we only have 6-9 months left, is chemo worth it? (we are entering our 3 weeks into chemo now with all the grizzly side effects)

 

When does the countdown to the 6-9 months start?

 

How will I know if our time is getting shorter?

 

I want to ask his team these questions, but I don’t know how without turning into a bumbling idiot that they can’t understand from the sobbing noise. Also, I am not sure if the Dr.s will be straight with me. They always seem to avoid anything close to this conversation. Dont get me wrong, we have a great team...just very....textbook.

please help

 

 

 

 


 

 

 

 

 

 

grandmafay's picture
grandmafay
Posts: 1612
Joined: Aug 2009

First, I am sorry for what you are going through. I lost my husband to colon cancer almost 4 years ago following a 6 year battle. The literature at the time suggested that the best we could hope for was 22 months. Our doctors never gave us a time limit. They admitted that they didn't know and that each person is different. He chose to fight for as much time as he could.  It was his choice and I told him he could stop whenever he wanted to do so. That said, it did fall to me to ask the tough questions. Not an easy task. Finally, when I felt in my heart that he was suffering needlessly without improvement, I asked his oncologist to be "brutally honest" with us, he confirmed my suspicion this time the chemo was just making him sicker. I could tell that the dr hated  to admit defeat. In fact, when my husband thanked the dr for his care, the dr came close to tears. 

Let me try to answer your questions by first saying that there really aren't any answers. The 6-9 months is an educated guess at best. There is no countdown or starting date. Your husband needs to decide when or if he wants to stop chemo. You can discuss it with him and even express an opinion, but it is his life and should be his decision. i say that because i believe it, but also because you don't want to be left with regrets, guilt or second guessing when he is gone. You will probably still have some of those three things, we all do, but allowing him to make the decision takes some of it off the table. 

How will you know that time is getting shorter? In our case, I just knew.  I can't explain it.  We had been married for 42 years and were the kind of couple that could finish each other's sentences. Maybe that had something to do with it. We drove people crazy because, without saying a word, we could share a glance and know what the other was thinking. Our grown children would say, "What?  i saw that look." We had a long, shared history. 

I don't know if any of this helps. It's longer than I planned.  I would suggest that you contact hospice. They are very good at helping both the patient and the family. he may not qualify yet and if he is still on chemo, but talk to them. If the chemo is palliative, they may allow it.  Take care, Fay

 

mockingbird's picture
mockingbird
Posts: 3
Joined: Aug 2013

Hi Fay,

Thank you for your reply. My husband and I are close too, down to “the look” drives our kids nuts. I guess I can have gut feelings about how he is doing, but I cant tell if it’s the chemo or the cancer wearing him down so. His color scares me and I just feel so lost. This is the first time I have really talked about any of this, with exception to my mother, but she worries about me and the children, so she candy coats everything to make sure we are all ok too. My husband is in the Army and we are used to year long deployments and last min. mission calls to leave, but this is one thing I am having trouble preparing for. I do not let my family see me struggle; I cry in the closet and just don’t want to add any more stress to my husband or family.

oh i forgot to add that, yes the chemo is palliative.

Thank you again

Gena

grandmafay's picture
grandmafay
Posts: 1612
Joined: Aug 2009

Sorry I didn't get back to you sooner. I don't come here as often as I used to. Our children are grown with children of their own, so most of the time it was just the two of us. We cried together sometimes. He had a great sense of humor, though, so we laughed together, too. It sounds strange, but some of my best memories are from those six years. They were also the hardest. When he felt up to it, we made memories with family and friends. I still try to do that.

I understand that lost feeling. I,also, don't think we are ever prepared to lose a loved one. We may think we are, but we aren't. There really isn't any way to prepare. We can be sure our affairs are in order. We can ask all the questions, but we can't prepare our hearts. As one friend who is a trained mental health professiona saidl, "Wouldn't it be terrible if you lost someone and didn't feel sad?" In many ways I did feel that Doug and I had time to muddle through some of the stages of grief together. Also, there was nothing left unsaid. We had many chances to say good bye in many ways. We said I love you often. 

Do see about getting hospice involved. They are usually very good. Fay

PS: If you need support and think I can help, don't hesitate to PM me. Then I get an alert on my email and will respond sooner. 

Ladylacy
Posts: 468
Joined: Apr 2012

So sorry to hear about your husband.  Mine decided after we were told that his 2nd primary had reoccurred and spread to his lung, that he would not have any more chemo.  The spots in his right lung were small but had grown over the last 2 PET/CT scans so they decided to try and biopsy them.  They told us up front that due to their location it would be hard and it could cause his lung to collapse, which it did but they were able to get some cells which turned out to be cancer.  They told us that chemo would only buy him time.  Surgery was out due to previous radiation, surgery and more radiation in basically the same spot. 

This was in February 2013 and today he is doing about the same as in February.  He does have a feeding tube as he is unable to swallow, is on pain medication but says his pain isn't that bad and doesn't take it as he should, but I think it is worse than he lets on.  His breathing isn't bad either.  He has his good days when he works in the yard, which he loves and then he has those days when he just sits in his recliner and dozes. 

The doctors didn't give us a time because we were told they don't know, and guess what they don't.  I am not all that religious but I believe that the only person who knows how much time you have left is the man upstairs.  Too many have been told 6 months and 2 years later are still with us. 

As to continue chemo that is a decision that your husband needs to make and you will need to support him.  Chemo we were told could hasten my husband's time as well as prolong it, but wouldn't cure him.  After reading all the side effects that people have while on chemo, while I would rather he had tried the chemo once again, I am glad that he took quality of life over quantity. 

Wishing you peace and comfort -- Sharon

jim and i's picture
jim and i
Posts: 1591
Joined: May 2011

As the others have stated, there is really no time line. My husband was given less than a year over a year ago. The cancer had spread to his lungs with numerous nodules that seemed to multiply over night. Jim asked the oncologist, "If I was your brother what would you tell him?" The doctor replied. "Chose quality over quantity."

As a pastor I saw many people suffer through prolonged treatment just to please their family. So I made sure from the beginning that I was ok with what ever decision he made. Of course deep down I wanted him to try everything. He chose quality. He continues on the feeding tube since he has swallow and taste problems, drinks a whey protein drink every morning, plus three servings of BarleyMax for enzymes. His cancer is now slow growing. The oncologist is baffled but said "Keep doing what your doing, it's working." I omited the most important treatment of all, PRAYER. I am praying for you both. PM me if you need a listening ear as I do not check this board as often as the Head and Neck board.

I believe in miracles. Debbie

grandmafay's picture
grandmafay
Posts: 1612
Joined: Aug 2009

All I can add to that is amen. 

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