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SusanW #122416 09-28-2010 08:56 AM
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Thank you all for your comments and advice.
We are still trying to process all of this, it is just so overwhelming. It is just mind boggling to me as to why treatment will not erase it in the lungs as it did on his BOT.
Susan, so glad for you that your husb was able to have surgery to remove the cancer! Praise!
They have told us surgery is not an option as there are 15 small spots on John's lungs.
We are holding out hope that this round of chemo will shrink them, at least until a new breakthru can be made, and yes, there could be some miraculous discovery in the next couple years, who knows? Staying positive is hard, but there is no option. I have a feeling this sounding board will be my sanity for awhile. Bless you all.

Bonnie


Bonnie

CG to husb John, 57, love of my life for 35 yrs.
Dx 2/10, T2N2cMx, SCC BOT & lymph nodes.
Non smoker. Biopsy HPV+.
No surgery - IMRT 35X + 7 chemos cleared BOT
9/10-mets to lungs.
2 rounds chemo, last one trial drug which did not work.

Lost the battle, but walking in Glory 9/7/11.
SusanW #122439 09-28-2010 06:45 PM
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Posts: 58
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Susan,
Thanks for the positive thoughts. We have been told John can't have surgery, and chemo is only a palliative treatment. Kind of takes you aback when they say, "you might want to get your affairs in order" .
We're scared sh**less to say the least. Holding out hope for the new trial coming up.
Bonnie


Bonnie

CG to husb John, 57, love of my life for 35 yrs.
Dx 2/10, T2N2cMx, SCC BOT & lymph nodes.
Non smoker. Biopsy HPV+.
No surgery - IMRT 35X + 7 chemos cleared BOT
9/10-mets to lungs.
2 rounds chemo, last one trial drug which did not work.

Lost the battle, but walking in Glory 9/7/11.
Joined: Jun 2010
Posts: 58
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Posts: 58
Yes, that's what we understand too, Charm, that it is oral cancer met to lungs, not lung cancer. What I do not understand is why they said it is not curable now -? Many questions to be answered on Thurs. at our next appt.
Thank you for your continued support and info.

Bonnie


Bonnie

CG to husb John, 57, love of my life for 35 yrs.
Dx 2/10, T2N2cMx, SCC BOT & lymph nodes.
Non smoker. Biopsy HPV+.
No surgery - IMRT 35X + 7 chemos cleared BOT
9/10-mets to lungs.
2 rounds chemo, last one trial drug which did not work.

Lost the battle, but walking in Glory 9/7/11.
Joined: Feb 2010
Posts: 235
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Joined: Feb 2010
Posts: 235
Bonnie, this cancer scares the crap out of me too. And I completely understand what you mean that it's hard to believe it when you look at your strong guy. In addition to being scared I get angry, I can't believe how unfair it is and I know that you must be going through some of that too. And then there's that fine line of how much do you vent to your husband because you want to stay positive for him,right???
Use this board, use us for support and use any support you can get on the outside. Your attitude is so good and support will only help that.
On a practical note, you may find it helpful to write down your questions before you go, remember there are NO stupid questions.


CG to Spouse BOT, Chemo and radiation started on March 29,2010
Ended on May 14,2010. LET THE HEALING BEGIN!!!
SusanW #122453 09-29-2010 04:28 AM
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Posts: 229
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Posts: 229
So overwhelming.....many thoughts and hugs headed your way.


Patty
08-10-09 Partial Glossectomy w/suprahyoid neck dissection
SCC T1NOMX Stage I | 46 years old
Joined: Jun 2009
Posts: 440
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Bonnie, I will be sending you prayers. Keep up the positive attitude, and good luck on the upcoming appt!


Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
SusanW #122482 09-29-2010 11:38 AM
Joined: Jul 2009
Posts: 1,409
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Posts: 1,409
Bonnie, my thoughts are with both of you in this difficult time. Please vent here at the forum as often as you want, we're here to listen.

David 2


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
SusanW #122514 09-30-2010 03:49 AM
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Posts: 224
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I am truly sorry to read this. I will be praying for you, your husband, and your families. mets is hard to deal with, especially when told you had clean margins from surgery and went through radiation and chemo. You are told when you go through that they kill everything. But that's not always true. Some microscopic cells can withstand and it's not fair.
I hope that the chemo shrinks or at least keeps those spots at bay. I have a friend that was diagnosed with stage 4 brain cancer a year and a half ago. They did surgery, only got 80% of the tumor out. He went through radiation and he has been on chemo since the surgery. Tumor started to grow about 3 months ago, they changed the chemo he was on, and now it's shrinking again. So I will hope and pray that chemo helps or the trial does wonders for your husband.
Keep your chin up, sometimes life expectancies aren't always accurate.


25/female at diagnosis
Dx;stage 3 SCC tongue 03/25/2010
Surgery 04/13/2010
Trach,ng tube, peg feeding tube
Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue.
30 rounds IMRT ended July 15,2010
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Posts: 706
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Posts: 706
Bonnie-My husband also had mets to his lungs after surgery, rads, numerous chemos. I understand that because he DID have positive nodes at the time of surgery that it was highly likely that it would spread. We were not told this at the time.

I understand how "getting your affairs in order" is a scary thing to deal with but once it is done-a load will be taken off your mind and you can focus on your husband. Please pm me with any questions you may need personal answers to.

Sue


cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
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Well, our visit to the docs and 1st chemo yesterday went fairly well. They told us that they have very good success with this protocol, Carboplatin & Alimta, so we are looking for shrinkage and remission. Elimination would be great too with a miracle thrown in there for good measure!
The next 6 mo. with treatment every 3 wks. is going to be much easier than the 35 rads in 7 wks he had before, but I know it will drag through the holidays and Midwest winter. Don't know if that's good or bad.
A CT scan will be done by the 3rd treatment to check progress, and adjust the chemo if it's not working. At least that made us feel more secure in knowing they won't do the entire 8 treatments before knowing what's happening. Anyone else out there had these 2 chemo drugs? Hoping too, that side effects won't hinder living life like we want to. They've said these are tolerated fairly well.
Thanks all for the positive words - we need to focus on that and keep the mental stuff at bay.
Living life to the fullest from here on out~
Bonnie


Bonnie

CG to husb John, 57, love of my life for 35 yrs.
Dx 2/10, T2N2cMx, SCC BOT & lymph nodes.
Non smoker. Biopsy HPV+.
No surgery - IMRT 35X + 7 chemos cleared BOT
9/10-mets to lungs.
2 rounds chemo, last one trial drug which did not work.

Lost the battle, but walking in Glory 9/7/11.
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