Hello All! We are New to this discussion board!

crystal_gail123185

Hello All! My name is Crystal and I am helping my mom Tammy ( who isnt tech smart haha) get used to using this site. She just found out last week she has cancer; Basal Cell Carcinoma and Matastatic neck cancer. She had surgery on Friday and The doctor said That they cancer didnt start in her neck and that they need to find the source. Has anyone else been through this? And what can we expect in our near future? Im sorry we are researching more about her cancer but arent sure what to expect.

thanks

crystal
and
tammy

Fire34

Unknow here
Tammy
I had sqamous cell without mets. Mine was an unknown primary stage IV with HPV+. I had to have extra rads to the opposite side of my neck as they(U of Chicago) were uncertain where it started from. I had a suspect area on the base of my tongue that turned out negative.
I wish I would have found this board before I started. My treatment started with induction chemo with carboplatin, taxol & erbitux. Then 5 alternating weeks of concurrent(at the same time)twice daily chemoradiation with 5FU, hydroxyurea & erbitux.
I had the usual side effects from the rads/chemo that the hopsital was on top of. Trouble swallowing, sores on my tongue from the 5FU, and the rash from the erbitux. The hopsital had the medicine for all of the side effects I had. My white count stayed up but still had numerous infections that kept me inpatient more than I would have liked.
Dont mean to scare you and your mom. My treatment seems to be a little worse than some on this board, some even continued to work thru theirs.
How is your mom,s doctor so sure that the cancer in the neck is not the primary? Is the basal cell, skin cancer? I had a friend who had a melanoma and it spread to his lymp nodes. Just a thought
Once a treatment plan has been established there will be much more info as far as ports, pegs etc.
Best Wishes & Prayers for your mom
Dave

Kimba1505

Fire34 said:

Unknow here
Tammy
I had sqamous cell without mets. Mine was an unknown primary stage IV with HPV+. I had to have extra rads to the opposite side of my neck as they(U of Chicago) were uncertain where it started from. I had a suspect area on the base of my tongue that turned out negative.
I wish I would have found this board before I started. My treatment started with induction chemo with carboplatin, taxol & erbitux. Then 5 alternating weeks of concurrent(at the same time)twice daily chemoradiation with 5FU, hydroxyurea & erbitux.
I had the usual side effects from the rads/chemo that the hopsital was on top of. Trouble swallowing, sores on my tongue from the 5FU, and the rash from the erbitux. The hopsital had the medicine for all of the side effects I had. My white count stayed up but still had numerous infections that kept me inpatient more than I would have liked.
Dont mean to scare you and your mom. My treatment seems to be a little worse than some on this board, some even continued to work thru theirs.
How is your mom,s doctor so sure that the cancer in the neck is not the primary? Is the basal cell, skin cancer? I had a friend who had a melanoma and it spread to his lymp nodes. Just a thought
Once a treatment plan has been established there will be much more info as far as ports, pegs etc.
Best Wishes & Prayers for your mom
Dave

Welcome Crystal and Tammy...
...and very sorry that you have found your way here out of need. We are all here because we, or who we love, have been faced with the diagnosis of cancer (the head and neck kind). You will find great information, support, understanding and care here.

My partner, Mark was diagnosed with Squamous Cell Carcinoma of the left tonsil with extensive mets to the lymph. Stage IV HPV16+ He is almost 4 weeks post treatment. (Surgery, radiation, chemotherapy)

It sounds like your mom's primary is not of the head and neck, but the mets are to the neck. So, you are dealing with a different critter than I am familiar with, but that does not mean someone here will not have helpful information regarding her diagnosis. Some of her treatment may be similiar to those here.

Treatment to the head and neck is pretty brutal, and there is a range of experiences which you will hear. It results in a "prepare for the worst hope for the best" position. I share on these boards Mark's experience, and information I have learned being with him from the jump. But, as a caretaker, like you to your mom, I come at this, listening to those who have battled, to help me help Mark. I also share my caretaker experiences, which are hard sometimes.

Stay with us here for a while...I honestly would not have faired so well with out this site.
Good energy to you and your mom as you journey forward,
Kim

Hondo

Hi Crystal / Tammy

Welcome to our family here on CSN, I am NPC and the doctors never did find the primary I am 5 years passed my last treatment and my PET last week came back clean.

Hope you plan to stay with us

crystal_gail123185

Fire34 said:

Unknow here
Tammy
I had sqamous cell without mets. Mine was an unknown primary stage IV with HPV+. I had to have extra rads to the opposite side of my neck as they(U of Chicago) were uncertain where it started from. I had a suspect area on the base of my tongue that turned out negative.
I wish I would have found this board before I started. My treatment started with induction chemo with carboplatin, taxol & erbitux. Then 5 alternating weeks of concurrent(at the same time)twice daily chemoradiation with 5FU, hydroxyurea & erbitux.
I had the usual side effects from the rads/chemo that the hopsital was on top of. Trouble swallowing, sores on my tongue from the 5FU, and the rash from the erbitux. The hopsital had the medicine for all of the side effects I had. My white count stayed up but still had numerous infections that kept me inpatient more than I would have liked.
Dont mean to scare you and your mom. My treatment seems to be a little worse than some on this board, some even continued to work thru theirs.
How is your mom,s doctor so sure that the cancer in the neck is not the primary? Is the basal cell, skin cancer? I had a friend who had a melanoma and it spread to his lymp nodes. Just a thought
Once a treatment plan has been established there will be much more info as far as ports, pegs etc.
Best Wishes & Prayers for your mom
Dave

I am not sure how the doctor
I am not sure how the doctor is so sure the neck cancer is the primary source. I may have misunderstood what he said. But he did say that he wants to run more tests and doesnt wanna do any major surgeries with out finding the primary source of the cancer. There were spots that showed up on a chest xray but that could be alot of things. We will know more this week hopefully! Thanks for you information hun!

God bless

crystal_gail123185

Kimba1505 said:

Welcome Crystal and Tammy...
...and very sorry that you have found your way here out of need. We are all here because we, or who we love, have been faced with the diagnosis of cancer (the head and neck kind). You will find great information, support, understanding and care here.

My partner, Mark was diagnosed with Squamous Cell Carcinoma of the left tonsil with extensive mets to the lymph. Stage IV HPV16+ He is almost 4 weeks post treatment. (Surgery, radiation, chemotherapy)

It sounds like your mom's primary is not of the head and neck, but the mets are to the neck. So, you are dealing with a different critter than I am familiar with, but that does not mean someone here will not have helpful information regarding her diagnosis. Some of her treatment may be similiar to those here.

Treatment to the head and neck is pretty brutal, and there is a range of experiences which you will hear. It results in a "prepare for the worst hope for the best" position. I share on these boards Mark's experience, and information I have learned being with him from the jump. But, as a caretaker, like you to your mom, I come at this, listening to those who have battled, to help me help Mark. I also share my caretaker experiences, which are hard sometimes.

Stay with us here for a while...I honestly would not have faired so well with out this site.
Good energy to you and your mom as you journey forward,
Kim

Thanks, Kimba I will keep
Thanks, Kimba I will keep checking on here. Its nice to know theres other people going through the same things. I will keep you and mark in my thoughts!

Skiffin16

crystal_gail123185 said:

I am not sure how the doctor
I am not sure how the doctor is so sure the neck cancer is the primary source. I may have misunderstood what he said. But he did say that he wants to run more tests and doesnt wanna do any major surgeries with out finding the primary source of the cancer. There were spots that showed up on a chest xray but that could be alot of things. We will know more this week hopefully! Thanks for you information hun!

God bless

Welcome Aboard
Welcome aboard, tons of information and history here....

Best,
John

sweetblood22

Hondo said:

Hi Crystal / Tammy

Welcome to our family here on CSN, I am NPC and the doctors never did find the primary I am 5 years passed my last treatment and my PET last week came back clean.

Hope you plan to stay with us

Welcome, but sorry you guys had to find your way here.
You will find this site a veritable fount of information. I wish I found it before I started treatment. I had SCC unknown primary with mets to lymphnodes stage 4. They never found my primary. I had a modified radical neck dissection, 23 lymphnodes removed, 3 cancerous and they also took my left salivary gland.

I then had 30 rads which I finished 5-15-09. It will be two yrs october 9 that I found my swollen lymph node. This treatment is hard, the side effects for some of us more severe and long lasting, but we are here and are scrappy survivors. I hope whatever course your mom chooses that she get well and have her treatment be with managable side effects.
Blessings,
sweet