A Cry for help- A Cry for Contact !

Clearblue

I am new to this site and new to any kind of "public" forum.

Our medical staff have now suggested treatment with Erbitux , Cetuximab Drug.
Is there anybody out there who has had this and what and how did you deal with side effects?

My wife (mom of 5yr old daughters) has a condition -Fanconi Anemia. This produces malignant tumors. Re med. literature , radaition therapy & chemo is NOT advised owing to hypersensitivity.She has survived two cancers in the last 14 years and for the last 5 months has fought two instances of squamus carcinoma -larynx and hypopharynx.

(We have not heard of any other surviving person with Fanconi anaemia- so maybe u're out there or your friend is) If anyone has anything to say -we'd be just greatful for a response.

soccerfreaks

Welcome
I am not familiar with Fanconi Anemia, other than the reading I have just done online, but I am familiar with cancer.

I wonder how your wife can be expected to survive cancer if she, in fact, cannot be treated for it. I wonder how she can survive cancer if you choose to ignore medical advice to go for the chemotherapy.

Personally, if I have to choose between 'med. literature' and the medical professionals standing right in front of me, I am going to go with my medical professionals or find ones that I can trust more than what I read in 'med. literature'.

There is no doubt that complications such as the one you describe make cancer an even tougher disease to deal with. That your wife's condition, by its very nature, propagates cancer makes it that much more difficult.

Best wishes to your wife and her family. I do not envy you your position as principal caregiver but have the highest regard for anyone who takes on the role.

And welcome to CSN .

Take care,

Joe

Clearblue

soccerfreaks said:

Welcome
I am not familiar with Fanconi Anemia, other than the reading I have just done online, but I am familiar with cancer.

I wonder how your wife can be expected to survive cancer if she, in fact, cannot be treated for it. I wonder how she can survive cancer if you choose to ignore medical advice to go for the chemotherapy.

Personally, if I have to choose between 'med. literature' and the medical professionals standing right in front of me, I am going to go with my medical professionals or find ones that I can trust more than what I read in 'med. literature'.

There is no doubt that complications such as the one you describe make cancer an even tougher disease to deal with. That your wife's condition, by its very nature, propagates cancer makes it that much more difficult.

Best wishes to your wife and her family. I do not envy you your position as principal caregiver but have the highest regard for anyone who takes on the role.

And welcome to CSN .

Take care,

Joe

Hey Joe- ERBITUX
hI THERE AND THANKS for speedy reply !!!
Maybe i didnt make myself clear. I said, that accord to all med literature, meaning the few casa existing concerning Fanconi patients who have been treated with RT /Cchemo; radiation and chemo is not recommended because of hypersensitivity. Our situation is heartripping. We cant have the privilege of radiation which for any regular person is the suggested course of action. According to less the less than handful of cases, 50% never made it throught the sessions. So the wretched choice has been: Radiate and risk severe results or operate with probable reocurrence. ALSO I DONT KNOW HOW I CAN FIND OUT If in the last 2 years anyone with Fanconi has been treated for squamus - ? Really driving me insane.

BUT,
the onco teams ARE NOW suggesting erbitux only, which is biological.
So i wanted to know how people who have received this, dealt/deal with the effects(severe rash , acne). We start this on Sunday next week. It is unkown how she'll react to it.
Thanks,

D Lewis

Clearblue said:

Hey Joe- ERBITUX
hI THERE AND THANKS for speedy reply !!!
Maybe i didnt make myself clear. I said, that accord to all med literature, meaning the few casa existing concerning Fanconi patients who have been treated with RT /Cchemo; radiation and chemo is not recommended because of hypersensitivity. Our situation is heartripping. We cant have the privilege of radiation which for any regular person is the suggested course of action. According to less the less than handful of cases, 50% never made it throught the sessions. So the wretched choice has been: Radiate and risk severe results or operate with probable reocurrence. ALSO I DONT KNOW HOW I CAN FIND OUT If in the last 2 years anyone with Fanconi has been treated for squamus - ? Really driving me insane.

BUT,
the onco teams ARE NOW suggesting erbitux only, which is biological.
So i wanted to know how people who have received this, dealt/deal with the effects(severe rash , acne). We start this on Sunday next week. It is unkown how she'll react to it.
Thanks,

Sweetblood
Unless I am mistaken, Sweetblood, who posts on the Head/Neck board, has Fanconi's Anemia.

Deb

staceya

D Lewis said:

Sweetblood
Unless I am mistaken, Sweetblood, who posts on the Head/Neck board, has Fanconi's Anemia.

Deb

I am sure she has posted
I am sure she has posted that she has the same type of anemia.

Hondo

Hi Clearblue
Welcome here to CSN, sorry to hear about your Wife having this cancer but hope you get the help and treatment needed. I believe there are two people here on this forum that have the same type of blood disorder, sweetblood and Chef daddy, As of right now Sweetblood is out of pocket with no internet and chefdaddy is in the hospital with pneumonia. Many of us here have taking the Erbitux with radiation but don’t have the fanconi problem, I hope soon that sweet or chef can get back logged in to help give you a better answer to your question.

All the best to you and again welcome to CSN

Pam M

D Lewis said:

Sweetblood
Unless I am mistaken, Sweetblood, who posts on the Head/Neck board, has Fanconi's Anemia.

Deb

Sweetblood Does have Fanconi's Anemia
Hopefully, she'll see this thread.

Scambuster

I had Erbitux + Radiation only
Hi CB,

Sorry to hear your dilemma. I was treated with Erbitux for and SCC of the Left Tonsil (& only Erbitux). I had some indications of spread or inflammation in two lymph nodes as showed up on the PET/CT. I also had surgery to remove the tumor prior to treatment.

About 10 days after surgery I had what they call the 'Load Dose' which is I recall 150% by volume of the regular amount of the Erbitux. I started the Radiation (IMRT) the following week and I was then given the Erbitux once a week for the 7 remaining weeks of radiation. It only takes about 60-90 minutes each infusion.

As for the side effects, I had a bad rash on my face for a couple of weeks. I used a topical antibiotic cream and it went away soon after. For me it wasn't big deal and only a little unconfortable when it was at its worst.

I hope this is of some use and I wish you both well.

Scambuster

thegirlfriend

D Lewis said:

Sweetblood
Unless I am mistaken, Sweetblood, who posts on the Head/Neck board, has Fanconi's Anemia.

Deb

Fanconia Anemia
thats what I thought Sweetblood said in one of her previous posts.


February 15, 2010 - 7:10pm

"I worked myself to death even though I had Fanconis Anemia, I had to make money. I never manifested any problems as far as my blood counts went, but I was still very tired all the time."

Clearblue

Hondo said:

Hi Clearblue
Welcome here to CSN, sorry to hear about your Wife having this cancer but hope you get the help and treatment needed. I believe there are two people here on this forum that have the same type of blood disorder, sweetblood and Chef daddy, As of right now Sweetblood is out of pocket with no internet and chefdaddy is in the hospital with pneumonia. Many of us here have taking the Erbitux with radiation but don’t have the fanconi problem, I hope soon that sweet or chef can get back logged in to help give you a better answer to your question.

All the best to you and again welcome to CSN

Hondo- thank you-Looking for Sweet & Chef
Hi there

Today we had our first Erbitux infusion.
If you do manage to make contact with either of them, send them our heartfelt wishes.
Im not sure yet if im using this forum in the right way. Do i communicate with them perosnally / directly or is this how we do it?
Also where do i learn more about you and the people iam publicaly communicating with?If you hear from any of them , please mention our name.

Clear.

MarineE5

Clearblue said:

Hondo- thank you-Looking for Sweet & Chef
Hi there

Today we had our first Erbitux infusion.
If you do manage to make contact with either of them, send them our heartfelt wishes.
Im not sure yet if im using this forum in the right way. Do i communicate with them perosnally / directly or is this how we do it?
Also where do i learn more about you and the people iam publicaly communicating with?If you hear from any of them , please mention our name.

Clear.

Communicate with others
Clearblue,

If you look up to the left of the page you will see a block with CSN in the tab. Go down the list and you will see CSN Email. Click on that and you will go into a private message section and you can select to write a new message. You will use the person's on screen name to send the message to them. Where it says- TO: I would put Clearblue,to write to you. It took me couple of tries to do it, but it does work well.

My Best to You and Everyone Here

Hondo

Clearblue said:

Hondo- thank you-Looking for Sweet & Chef
Hi there

Today we had our first Erbitux infusion.
If you do manage to make contact with either of them, send them our heartfelt wishes.
Im not sure yet if im using this forum in the right way. Do i communicate with them perosnally / directly or is this how we do it?
Also where do i learn more about you and the people iam publicaly communicating with?If you hear from any of them , please mention our name.

Clear.

Hi Clearblue

You can contact them by PM Private Mail so the next time they log in they will see it, I will send you a PM to show you how it works. Last I heard Chef daddy was still in the hospital and sweetblood was having some problems, both of them are some very great and strong people to go through what they have been through.

All the best to you

sweetblood22

clearblueand wife: greetings from sweetblood
i am so sorry that i was not able to answer your post sooner. I apologize, but I have had computer problems, and a couple of serious issues arise that I was dealing with.

I am 42 years old and have Fanconis Anemia. I would so love to talk to someone about this serious genetic disorder. I am going to actually private message you if that is okay with some contact info. This has been a long hard road living with FA and I would really appreciate the chance to speak with another woman about surviving and living with FA.

Again, apologies that I did not respond sooner.

"sweet"

sweetblood22

clearblueand wife: greetings from sweetblood
i am so sorry that i was not able to answer your post sooner. I apologize, but I have had computer problems, and a couple of serious issues arise that I was dealing with.

I am 42 years old and have Fanconis Anemia. I would so love to talk to someone about this serious genetic disorder. I am going to actually private message you if that is okay with some contact info. This has been a long hard road living with FA and I would really appreciate the chance to speak with another woman about surviving and living with FA.

Again, apologies that I did not respond sooner.

"sweet"

sweetblood22

double post
double post

TKennedy

sweetblood22 said:

clearblueand wife: greetings from sweetblood
i am so sorry that i was not able to answer your post sooner. I apologize, but I have had computer problems, and a couple of serious issues arise that I was dealing with.

I am 42 years old and have Fanconis Anemia. I would so love to talk to someone about this serious genetic disorder. I am going to actually private message you if that is okay with some contact info. This has been a long hard road living with FA and I would really appreciate the chance to speak with another woman about surviving and living with FA.

Again, apologies that I did not respond sooner.

"sweet"

Teresa
Hi,

My name is Teresa Kennedy and I am the Family Support Coordinator at the Fanconi Anemia Research Fund. I read that you have Fanconi anemia (FA) and I wanted to reach out to you and introduce myself. Have you contacted the Fanconi Anemia Research Fund previously? We are a non-profit organization with a two-fold mission: providing information and support to patients and families with FA worldwide and to find effective treatments and a cure for FA. To date, we have funded $13 million into FA research.

We have an online support group for parents of children with FA and adults with FA as well as a separate group for adults with FA. In June we are hosting our 19th Annual FA Family Meeting (in Maine) and next February we are hosting our 2nd meeting for Adults with FA (in Portland, OR). At both meetings, we bring in FA doctors and researchers to talk with adult patients and parents about treatments for FA. We also have small support groups (specifically for adults with FA) at these meetings. It is a great way to meet others with FA, share experiences, and to learn more about the disease. Attendance to both meetings is free and we have a scholarship assistance program to help offset the cost of travel. Also, if you would like me to put you in touch with other adults with FA and cancer, please let me know.

Patients with FA are 750 times more likely to develop head and neck cancers than the general population, and at a much younger age (the median age is 27). As you may know, patients with FA are extremely sensitive to radiation and chemotherapy, so precautions must be taken. How are you doing now? Would you like me to send you some materials about FA and cancer?

All my best,
Teresa
teresa@fanconi.org
tel: 1.888.FANCONI (or 1.888.326.2664)
www.fanconi.org

TKennedy

Fanconi Anemia and Cancer
Hi,

My name is Teresa Kennedy and I am the Family Support Coordinator at the Fanconi Anemia Research Fund. I read that you have Fanconi anemia (FA) and I wanted to reach out to you and introduce myself. Have you contacted the Fanconi Anemia Research Fund previously? We are a non-profit organization with a two-fold mission: providing information and support to patients and families with FA worldwide and to find effective treatments and a cure for FA. To date, we have funded $13 million into FA research.

We have an online support group for parents of children with FA and adults with FA as well as a separate group for adults with FA. In June we are hosting our 19th Annual FA Family Meeting (in Maine) and next February we are hosting our 2nd meeting for Adults with FA (in Portland, OR). At both meetings, we bring in FA doctors and researchers to talk with adult patients and parents about treatments for FA. We also have small support groups (specifically for adults with FA) at these meetings. It is a great way to meet others with FA, share experiences, and to learn more about the disease. Attendance to both meetings is free and we have a scholarship assistance program to help offset the cost of travel. Also, if you would like me to put you in touch with other adults with FA and cancer, please let me know.

Patients with FA are 750 times more likely to develop head and neck cancers than the general population, and at a much younger age (the median age is 27). As you may know, patients with FA are extremely sensitive to radiation and chemotherapy, so precautions must be taken. How are you doing now? Would you like me to send you some materials about FA and cancer?

All my best,
Teresa
teresa@fanconi.org
tel: 1.888.FANCONI (or 1.888.326.2664)
www.fanconi.org

sweetblood22

TKennedy said:

Fanconi Anemia and Cancer
Hi,

My name is Teresa Kennedy and I am the Family Support Coordinator at the Fanconi Anemia Research Fund. I read that you have Fanconi anemia (FA) and I wanted to reach out to you and introduce myself. Have you contacted the Fanconi Anemia Research Fund previously? We are a non-profit organization with a two-fold mission: providing information and support to patients and families with FA worldwide and to find effective treatments and a cure for FA. To date, we have funded $13 million into FA research.

We have an online support group for parents of children with FA and adults with FA as well as a separate group for adults with FA. In June we are hosting our 19th Annual FA Family Meeting (in Maine) and next February we are hosting our 2nd meeting for Adults with FA (in Portland, OR). At both meetings, we bring in FA doctors and researchers to talk with adult patients and parents about treatments for FA. We also have small support groups (specifically for adults with FA) at these meetings. It is a great way to meet others with FA, share experiences, and to learn more about the disease. Attendance to both meetings is free and we have a scholarship assistance program to help offset the cost of travel. Also, if you would like me to put you in touch with other adults with FA and cancer, please let me know.

Patients with FA are 750 times more likely to develop head and neck cancers than the general population, and at a much younger age (the median age is 27). As you may know, patients with FA are extremely sensitive to radiation and chemotherapy, so precautions must be taken. How are you doing now? Would you like me to send you some materials about FA and cancer?

All my best,
Teresa
teresa@fanconi.org
tel: 1.888.FANCONI (or 1.888.326.2664)
www.fanconi.org

Hi Theresa
I believe I have visited your website a couple of years ago and downloaded a sort of handbook of sorts. Guidlines and info on Fanconis. Any info you can send me would be appreciated. I will private message you my contact info if that would be okay.

I have met in the past with Dr. Arleen Auerbach, Dr. David Kutler, Dr. Farid Boulad, Dr. Alfred Gillio, and Dr. Steinberg in the past. I watched out for my bloodcounts over the years but I was unaware of the connection with head and neck cancer and FA.

Thank you so much for posting here for us. I would really love to contact another FA patient as I have never spoken to one. I am hopin clearblue also sees this post. I should forward it to him.

I would love to attend one of those gatherings, but I don't think I have the stamina to travel that far away yet. I would like info on it and the scholarship assistance program, please.

Clearblue

sweetblood22 said:

Hi Theresa
I believe I have visited your website a couple of years ago and downloaded a sort of handbook of sorts. Guidlines and info on Fanconis. Any info you can send me would be appreciated. I will private message you my contact info if that would be okay.

I have met in the past with Dr. Arleen Auerbach, Dr. David Kutler, Dr. Farid Boulad, Dr. Alfred Gillio, and Dr. Steinberg in the past. I watched out for my bloodcounts over the years but I was unaware of the connection with head and neck cancer and FA.

Thank you so much for posting here for us. I would really love to contact another FA patient as I have never spoken to one. I am hopin clearblue also sees this post. I should forward it to him.

I would love to attend one of those gatherings, but I don't think I have the stamina to travel that far away yet. I would like info on it and the scholarship assistance program, please.

not the most positive tone post
no chance of this happening for us.
Sweet i suddenly became enviouse of you meeting those names. Names ive only read about in footnotes.
But I get so frustrated. It's as if: whatever i hear is what ive heard befor.
SO Depressing.

"Hypersensitivity
"possible severe adverse effects to RT ADN chemo
"decide with care

BUT THE OPTIONS FOR TREATMENT, are so limited.
After all weve been through, the RISKS Radiation were just too much to cope with.- The thought of total larengectomy too much to bear. Damned if we do - Damned if we dont.
So sorry to be so negative.
YOu know the person who strted the study of Fanconi in our country (who unfortunately passed away a few years ago- believed that giving radiation was like malpractice. But oncologists today say that things have progreessed since then.
I need guidance on how i should start sharing info. I want the info to be used specifically for our case too. So tired of sharing histories with doctors and then to hear the same responses. We want practical answers- enough of revolving door information. I want to hear of more Fanconi patients who have had treatments and have succeeeded,

Have you considered alternative immunatherapy. Is there such a thing as developing "vaccine" for Fanconi- to develope immune system?

I suppose well wait for papers published from the conference.

sweetblood22

Clearblue said:

not the most positive tone post
no chance of this happening for us.
Sweet i suddenly became enviouse of you meeting those names. Names ive only read about in footnotes.
But I get so frustrated. It's as if: whatever i hear is what ive heard befor.
SO Depressing.

"Hypersensitivity
"possible severe adverse effects to RT ADN chemo
"decide with care

BUT THE OPTIONS FOR TREATMENT, are so limited.
After all weve been through, the RISKS Radiation were just too much to cope with.- The thought of total larengectomy too much to bear. Damned if we do - Damned if we dont.
So sorry to be so negative.
YOu know the person who strted the study of Fanconi in our country (who unfortunately passed away a few years ago- believed that giving radiation was like malpractice. But oncologists today say that things have progreessed since then.
I need guidance on how i should start sharing info. I want the info to be used specifically for our case too. So tired of sharing histories with doctors and then to hear the same responses. We want practical answers- enough of revolving door information. I want to hear of more Fanconi patients who have had treatments and have succeeeded,

Have you considered alternative immunatherapy. Is there such a thing as developing "vaccine" for Fanconi- to develope immune system?

I suppose well wait for papers published from the conference.

clearblue
hang in there. Please contact the dr who I have refferred you to. Don't get upset, just focus on trying to read up on the info I am trying to get to you. I will try to get you in touch with those people too. I know it's over whelming. This is a nasty genetic illness, that is a fact. But do not let the statistics get you down. we just need to try and get as informed as we can and keep fighting.

Don't wait for papers, go to the source. Contact Dr. Auerbach.

sweet

Clearblue

sweetblood22 said:

clearblue
hang in there. Please contact the dr who I have refferred you to. Don't get upset, just focus on trying to read up on the info I am trying to get to you. I will try to get you in touch with those people too. I know it's over whelming. This is a nasty genetic illness, that is a fact. But do not let the statistics get you down. we just need to try and get as informed as we can and keep fighting.

Don't wait for papers, go to the source. Contact Dr. Auerbach.

sweet

Got Ya! Clever woman.
Sh-t, shouldve done this ages ago.
Time is of the essence.