30 Years Old - Stage 4 Paranasal Squamous Cell Carcinoma - Request for Help

FightingforFHL

My husband is 30 years old.  He has always been the "picture of health" as an avid athlete and health conscious young man.  In March of 2011 he was diagnosed with stage 4 squamous cell carcinoma of the paranasal sinuses with an unknown primary.  The tumor spread along the nerves through to the sphenoid and cavernous sinuses encasing his internal carotid artery.  The cancer had also spread into his left orbit, but there was no lymph node involvement.  Since the cancer involved so many vital structures, the universtiy at which he was treating advised that we should first do chemotherapy and radiation to try to shrink the tumor before operating.  

He first underwent 3 weeks of induction chemotherapy with no response.  He then endured 7 weeks of chemotherapy and radiation (70gy).  Follow-up MRIs still showed no response.  He felt pretty good and recovered from the treatments, but by December/January he was beginining to experience tumor related symptoms again.  So, he decided to continue fighting this awful disease as aggressively as possible and he opted for radical surgery.  In February he had a craniotmy with carotid sacrifice and left orbit removal.  He also had a portion of his palate removed endoscopically.  We returned home to recover, but he developed a CSF leak and meningitis.  We returned to the hospital and he underwent another long surgery to repair the CSF leak. His life changed dramatically during that surgery as he suffered a middle cerebral artery stroke as a complication of the surgery.  After months of intense rehab, he is holding his own and working ever so hard to recover from the awful stroke that affected his right side mobility as well as his ability to speak.

After all that he has endured...he is still fighting.  The surgeons were able to remove all bulk tumor during the operations, however, about half of the specimens sent for pathology showed positive margins for remaining cancer cells.  His doctors offered palliative chemotherapy, but since he had no response to the initial rounds of chemo he has opted not to try that.  His quality of life has already been altered so greatly, and he is not up to feeling sick again from chemo. They told us there is no research or evidence to suggest that it would benefit him at this point.  As it stands we are just monitoring the cancer with MRIs.

So...I am writing here to ask anyone, anywhere if they have any information to help us.  It seems that we have now exhausted the conventional treatments options of surgery, chemo, and radiation.   We are willing to do anything that could help him.  Alternative treatments, remedies, anything!
Please feel free to message me too.

Thank you.

Sam999

My heart goes out to you and
My heart goes out to you and your husband to endure this at such a young age. I do not have any expertise in alternative medicine but have been reading up a bit and it seems some folks have been benefitted from bitter apricot kernel. If you do a search on this on amazon, some folks have written really good opinions. You may want to talk to them via email if they would and get more info.

My prayers and best wishes with you, hope things turn around.

Sam

Skiffin16

Thoughts, Prayers and Miracles...
I can't offer anything other than my thoughts, prayers, and belief in miracles.

John

Tonsil Dad

Skiffin16 said:

Thoughts, Prayers and Miracles...
I can't offer anything other than my thoughts, prayers, and belief in miracles.

John

Alternative.
I'm one on here who is into alternative options and do
take different products daily. All I will say is look at the web-site
www.alternative-cancer.net/78_alternatives.htm
I've researched a lot of the products and treatments and believe
they might help. But please I'm not a doctor or anything so do
your own homework, cause there are things out there with a lot
of hocus pocus "miricle cures" just to get your money, but also
there are a lot of alternative things that "might" help. If you have
exhausted conventional treatment then I would take a look at
that web site.
If you need more info or more Altrnative web -sites I visit, let me know.

God bless
Tonsil dad,

Dan.

Laralyn

I'm so sorry you both have to go through this!
Have you read the book Anti-Cancer? It talks about how diet and mental state can contribute to slowing cancer growth. It's a very commonsense book, and it advocates traditional treatment as well (which you have already tried). It's a great book, and I find myself going back to it periodically to remind myself of the importance of "changing my terrain."

The author eventually lost his battle with brain cancer, but he lived 10+ years longer than all of his doctors predicted. Hope this helps!

http://www.amazon.com/Anticancer-New-Way-Life-Edition/dp/0670021644/ref=sr_1_1?ie=UTF8&qid=1343260354&sr=8-1&keywords=anti-cancer

hwt

Laralyn said:

I'm so sorry you both have to go through this!
Have you read the book Anti-Cancer? It talks about how diet and mental state can contribute to slowing cancer growth. It's a very commonsense book, and it advocates traditional treatment as well (which you have already tried). It's a great book, and I find myself going back to it periodically to remind myself of the importance of "changing my terrain."

The author eventually lost his battle with brain cancer, but he lived 10+ years longer than all of his doctors predicted. Hope this helps!

http://www.amazon.com/Anticancer-New-Way-Life-Edition/dp/0670021644/ref=sr_1_1?ie=UTF8&qid=1343260354&sr=8-1&keywords=anti-cancer

Saddened to hear of your
Saddened to hear of your family's journey. Continue to research trials. My cousin was told to get his affairs in order after his melanoma metastasized. He did not give up, became part of a clinical trial and 8 years later he remains cancer free. God Bless!

FightingforFHL

Thank you
Thank you everyone for the thoughts, information, and kind words. I will take a look at each of the suggestions.
I appreciate it!

Tim6003

FightingforFHL said:

Thank you
Thank you everyone for the thoughts, information, and kind words. I will take a look at each of the suggestions.
I appreciate it!

Hi Fighting ...
My heart just hurt when I read your post. I was stage III base of tongue and I had (what I think) was a rough reaction to both Erbitux and radiation. Then I read your post and realize there are those out there who are MUCH stronger than me and tougher. I mean this as a compliment ...but be sure you tell your husband I am in awe of his ability to fight and his courage. And I also know first hand from my wife that you too are just as tough to stand by his side and help him through all of this.

I was treated with only Eribtux and radiation. No surgery or platinum chemo drugs. I was base of tongue stage III and 6 months out from treatments I am getting good scans and scopes.

Other than that, I can't offer anything but prayer. I do a "daily prayer task team" and I / we fast once a week for the people on our list. I don't put anyone on the list unless they ask, and I don't "approach people direclty" but I felt compelled to directly ask you if you would like me to put your husband and you on the list. If so you can message me or just post here.

As I said at the top, my heart hurt for you and your husband ...but I will also add I am in awe of your husbands and yours will to fight and the courage to make the decisions you have made so far ...I know it has been tough.

Whispered a prayer for you as I typed this .....

Best,

Tim

buzz99

Fighting
My heart goes out to the two of you. You and your husband have endured so much. I wish I could offer you some help on alternative treatments but I am not aware of anything which will help. My husband, Buzz, is on Hospice after his base of tongue cancer recurred 16 months after chemo/radiation. Palliative chemo has had no effect. We have also been told there is nothing to be done. My hubby has had a full life (he is 68) but it is so tragic that this is happening to someone as young as your husband. Take care and know that the fine folks here are there for you. Karen

FightingforFHL

Thank you very much both Tim
Thank you very much both Tim and Karen. It has all been so very hard, to say the least. However, we are determined to continue fighting.
My husband also had erbitux during his induction chemo. So I do know of some of those side effects as well.
We appreciate all thoughts and prayers. Tim, we would be very happy to be added to your prayer list. Thank you.

We will keep you both in our thoughts and prayers.

Ronjl

SCC
Have you looked at BEC-5 (Curaderm).
Also hydrogen peroxide (get book call "One Minute Cure" by Cavanaugh).
Never give up. Never give up. Never give up.
There are new things every day.
RJL

ToBeGolden

Ronjl said:

SCC
Have you looked at BEC-5 (Curaderm).
Also hydrogen peroxide (get book call "One Minute Cure" by Cavanaugh).
Never give up. Never give up. Never give up.
There are new things every day.
RJL

Blogging
My heart goes out to you and your husband. Although I know my suggestion may be totally stupid, I can't help putting it forward.

Everyone needs mental stimulation. There are blogs about everything. Put these two facts together, maybe you can help your husband blog about one of his favorite sport's topics. It might get his mind off his condition, for a short time.

I warned you that my idea was stupid. But I think I know this: Every patient needs to occupy his/her mind on something other than the disease for at least part of the day. Rick.

tesa

ToBeGolden said:

Blogging
My heart goes out to you and your husband. Although I know my suggestion may be totally stupid, I can't help putting it forward.

Everyone needs mental stimulation. There are blogs about everything. Put these two facts together, maybe you can help your husband blog about one of his favorite sport's topics. It might get his mind off his condition, for a short time.

I warned you that my idea was stupid. But I think I know this: Every patient needs to occupy his/her mind on something other than the disease for at least part of the day. Rick.

My mother had paranasal
My mother had paranasal cancer of the ephmoid sinus and maxillary sinus. It spread along the nerve to cavernous sinus and orbital area. The University of Michigan is great. I did not like MD Anderson.

dalapathys

God is there
No worries. your husband will live for long. God is there to make it. I really appreciate your husband courage and that make him to live for long.

AliviaD

Possible sphenoid sinus carcinoma

Hi I'm 34, 35 to two sleeps as my four yr old told me this morning, and I am currently waiting to find out what has caused my sphenoid sinus on the right to more than double in size... At last we know after 2 1/2 yrs what has caused the pain behind my right eye.  The last six months have seen my eye getting more painful ( feels like the socket is full of pressure) and after having the flu 3 weeks ago, my right side swelled up as my nose was blocked.  Dr (new) tried to tell me this pain was all caused by the sinus infection I had with the flu, however I explained this problem with my eye has been going for almost 3 yrs. 

 

firsly, my dr wants to clear the mucous and so I'm currently on nasal spray, steroids and extremely high antiBiotics... But I feel like we are wasting time.  my sphenoid sinus has been large enough to cause side effects in my right eye for as couple of yrs, I went to dr and he sent me to the eye specialist, but my problem wasn't visual.  that was 2 yrs ago... Silly me. 

 

Im probably over reacting.... But I know all the weird stuff that has been going on in my head, the headaches... Which they treated as migraine,  the constant teeth infections anod extractions... And my right eye.... 

 

Just wanted to vent with people that understand 

CivilMatt

AliviaD said:

Possible sphenoid sinus carcinoma

Hi I'm 34, 35 to two sleeps as my four yr old told me this morning, and I am currently waiting to find out what has caused my sphenoid sinus on the right to more than double in size... At last we know after 2 1/2 yrs what has caused the pain behind my right eye.  The last six months have seen my eye getting more painful ( feels like the socket is full of pressure) and after having the flu 3 weeks ago, my right side swelled up as my nose was blocked.  Dr (new) tried to tell me this pain was all caused by the sinus infection I had with the flu, however I explained this problem with my eye has been going for almost 3 yrs. 

 

firsly, my dr wants to clear the mucous and so I'm currently on nasal spray, steroids and extremely high antiBiotics... But I feel like we are wasting time.  my sphenoid sinus has been large enough to cause side effects in my right eye for as couple of yrs, I went to dr and he sent me to the eye specialist, but my problem wasn't visual.  that was 2 yrs ago... Silly me. 

 

Im probably over reacting.... But I know all the weird stuff that has been going on in my head, the headaches... Which they treated as migraine,  the constant teeth infections anod extractions... And my right eye.... 

 

Just wanted to vent with people that understand 

nice to meet you

AliviaD,

 

Welcome to the H&N forum.

 

This is what you should post in a new thread.  It should get you the response you wish.

 

Many people just see the date n an old thread and pass it by.

 

Matt

AliviaD

CivilMatt said:

nice to meet you

AliviaD,

 

Welcome to the H&N forum.

 

This is what you should post in a new thread.  It should get you the response you wish.

 

Many people just see the date n an old thread and pass it by.

 

Matt

Thanks Matt 

Thanks Matt