Beyond Curative - Shifting Focus To Quality Of Life

My husband (48, stage IVa now recurrent scc) had an appointment today with the oncologist and oncology surgeon following last weeks attempted bilateral neck dissection.  Unfortunately the cancer is spreading quickly, from the primary in the left tonsil to the right soft palate (left was completely destroyed from the previous tumor), right side of neck, nasal pharynx, base of skull, lngs, etc.  and the surgery did not take place once they scoped the area and biopsy proves they were correct to stop.

He decided to start Erbitux after hearing that there is no option to cure his cancer and the focus is now shifting to giving him more time.  He fought HARD to beat this cancer. 

Treatment prior to this was 9 Cisplatin and 90 radiation treatments.  He fought hard against the  PEG tube but that battle has ended.  He is severely malnourished due to the effects of treatment and the continued quick growth of this aggressive cancer.  They will insert the PEG next Weds.  I believe that the first Erbitux treatment will be in-patient due to his severely deteriorating condition.

Anyone have experience with Erbitux?  They are hoping he can have 6 months with this treatment but I have to tell you, seeing him suffering like this it is hard to imagine that the next 6 months would be the quality of life he chose. 

Without treatment he will hardly make it to Christmas.  We talked about this and do not want our sons to lose their Father during the Holidays.  I have been blessed to have this man in my life for 28 years and cannot imagine what it will be like to be here without him.  A cure is not possible but with love we will be there with him unitl the end.  My heart is broken but my sons need me to be there and stay strong for them. 

Hi Weezy,

I'm sorry to read your latest prognosis. I know a little about Erbitux. It was recommended to us by a the lead ENT at UCLA who we saw for a 2nd opinion. We ended up getting a 3rd and a 4th opinion. Unfortunately, the opinions were split so my husband ended up on Cisplatin.

The drs. against it told us it was still far from conclusive with less than 5 years of data. They would only recommend it for reoccurence.

The drs. who approved of it told us it is "targeted therapy". It goes after the kinds of cells related to SCC. 

We actually came into contact with someone who took it. He told us he experienced an acne-like rash. Other than that less side effects/toxicity?

It sounds like it mat be something to try in yiur husband's case.

I wish you continued strength and peace for you and your sons.

Godsgrl,

He did try Cisplatin first round along with radiation.  He had 9 Cisplatin treatments and 90 radiation treatments.  He really did great with the treatments, hardly any nausea but the weight loss was horrific (went down to 95 pounds).

Unfortunately that did not completely destroy the cancer.  What did happen is the tumor drastically shrunk, leaving a gaping hole in his soft palate (he now is left with a cleft palate) which causes food and drinks to go up into his sinuses and come out his nose.  We found a great sinus wash for this that has kept all that yucky stuff from causing an infection (Neils Med).

After waiting the 8 weeks post treatment to find out if it worked we were sad to hear that the tumor was still very much alive and had spread throughout his neck (from front to back), sinuses, base of tongue, base of skull, etc. 

When your Doctors tell you that there is no longer hope to cure the cancer but that they are now shifting to giving you more time..  well, that is the hardest thing to hear let alone accept. 

He continues to do well, is making plans for the future and has the best mental attitude I have seen.  We are doing a lot of renovations to the house and he is right in the middle of it.  His energy level should get better with a few days of feedings through the peg, he has lost his ambition to eat although he still can.

L.

Trust me....

Without Him I would not have made it this far, prayers have carried us through this and will continue to do so far after all this is over.

L.

hello

 Hopefully everything is ok. its hard you have to just stay focus on them and try to make them comfortable as possible. I lost my mom sept 29 of this year to cancer of the larynex of which had spread every where . the funny thing is that she wanted treatment up until the day she died . I looking at it would of decided differently so many of those sick days she had we could have spent with each other. Really together , just be with there if treatment is what they want do it. Just take care of yourself.

hello

 Hopefully everything is ok. its hard you have to just stay focus on them and try to make them comfortable as possible. I lost my mom sept 29 of this year to cancer of the larynex of which had spread every where . the funny thing is that she wanted treatment up until the day she died . I looking at it would of decided differently so many of those sick days she had we could have spent with each other. Really together , just be with there if treatment is what they want do it. Just take care of yourself.

hello

 Hopefully everything is ok. its hard you have to just stay focus on them and try to make them comfortable as possible. I lost my mom sept 29 of this year to cancer of the larynex of which had spread every where . the funny thing is that she wanted treatment up until the day she died . I looking at it would of decided differently so many of those sick days she had we could have spent with each other. Really together , just be with there if treatment is what they want do it. Just take care of yourself.

On 1/3/2008 Leman wrote:

hello

 Hopefully everything is ok. its hard you have to just stay focus on them and try to make them comfortable as possible. I lost my mom sept 29 of this year to cancer of the larynex of which had spread every where . the funny thing is that she wanted treatment up until the day she died . I looking at it would of decided differently so many of those sick days she had we could have spent with each other. Really together , just be with there if treatment is what they want do it. Just take care of yourself.

We have had a challenging two months.  The Erbitux is like any other cancer drug - full of side effects and discomfort.  The acne type rash was a slight problem but they gave him an ointment that took care of it quickly.

The worst side effects are the fatigue and the weight loss.  Two weeks ago he was at 91 pounds, last week 88 and I fear greatly his weigh-in tomorrow.  I know that he has lost more weight. 

Today we started with pump feedings through his peg tube so that he has 2 cans of "formula" throughout the night.  He is so weak and sleeps most of the time.  I fear there is little time. 

What I am grateful for is that we had Christmas with our sons, family and freinds.  I did not want our Sons to loose their dad over the Holidays.  His 49th birthday is this Feb but I know he will not make it.

Hospice has been a Godsend to our family.  They have taken incredible care of him AND us.  The assistance that they provide, in ALL areas, is the biggest comfort we could have through this journy towards the end of his life. 

I prayed for him to be here till the New Year and he is still with us...

On 1/3/2008 Weezy wrote:

 

On 1/3/2008 Leman wrote:

hello

 Hopefully everything is ok. its hard you have to just stay focus on them and try to make them comfortable as possible. I lost my mom sept 29 of this year to cancer of the larynex of which had spread every where . the funny thing is that she wanted treatment up until the day she died . I looking at it would of decided differently so many of those sick days she had we could have spent with each other. Really together , just be with there if treatment is what they want do it. Just take care of yourself.

We have had a challenging two months.  The Erbitux is like any other cancer drug - full of side effects and discomfort.  The acne type rash was a slight problem but they gave him an ointment that took care of it quickly.

The worst side effects are the fatigue and the weight loss.  Two weeks ago he was at 91 pounds, last week 88 and I fear greatly his weigh-in tomorrow.  I know that he has lost more weight. 

Today we started with pump feedings through his peg tube so that he has 2 cans of "formula" throughout the night.  He is so weak and sleeps most of the time.  I fear there is little time. 

What I am grateful for is that we had Christmas with our sons, family and freinds.  I did not want our Sons to loose their dad over the Holidays.  His 49th birthday is this Feb but I know he will not make it.

Hospice has been a Godsend to our family.  They have taken incredible care of him AND us.  The assistance that they provide, in ALL areas, is the biggest comfort we could have through this journy towards the end of his life. 

I prayed for him to be here till the New Year and he is still with us...