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#95271 05-11-2009 10:06 PM
Joined: Aug 2008
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TomT Offline OP
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Hello,

The last couple of weeks have been a whirlwind, getting bad news on metastis, trying to get paperwork filed, and continuing a "normal" life. Pam has decided to take part in a study of Cisplatin vs Cisplatin/Alimta. They were recommending Cisplatin for treatment, so we decided that she would enroll in a study that gives her a 50/50 chance of getting Alimta along with the Cisplatin. Our understanding is that Alimta has been used in the past, primarily for lung cancer and they are trying to determine if there is any benefit in head/neck cancers.

Was wondering if anyone has taken part in this study or had any history with Alimta? Our clinic only has two others currently participating in this study that I believe is based in Indianapolis.

We know the future is not real promising with a "rosy" prognosis of a couple of years but from conversations, sounds closer to 10 months to a year. Seems like each PET finds new spots popping up. We are 2 treatments and 6 weeks away from the next PET to find out if the treatment has any affect. She is scheduled to get 75 mg/m2 of Cisplatin, which I believe is less than she was going to get originally with radiation. Her first infusion with the Cis or Cis/Alimta is Wednesday and wondering how hard this first round will hit. Our youngest is getting confirmed on Sunday and it would be nice if she could attend.

Thanks, Tom


Tom-CG to wife, Pam 46@dx
Stage IV Tongue Cancer T2N2C
Dx 6/08, Surgery 7/08, 3 nodes positive
9/08 33IMRT/7Carbo/Taxol
4/09 node biopsy positive, mets to lungs/stomach
5/09 Cisplatin or Cis/Alimta study
6/09 Cis/Taxotere
9/09 Taxotere
1/10 Xeloda
3/10 Cetuximab weekly
6/29/10 lost battle
TomT #95274 05-12-2009 03:27 AM
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From what I remember, chemo takes several days to kick in. I was kinda slow and mine took 2 weeks before it got the best of me. The lower dosage might work to her benefit without so many side effects. One thing with the chemo you mentioned, there is no letter X in it so it means she shouldnt lose her hair, at least thats what I was told. Best of luck with treatments and I hope she is feeling ok for Sunday.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
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Tom,

I feel for the whole family and I wish I could make it all go away.

My first Cis was pretty much a non event. I did take Emends the am before and for the next 2 days and I just started my radiation after my first chemo. The 2nd one was pretty bad but by then I had 15 rad Tx's so who knows what really caused the reaction. Number 3 was by far the worst but again I had had 30+ rad Tx's.

What anti nausea drugs are they giving her?

If she gets the Alimta, what are supposed to be it's side effects?

Are they going to remove the node under her arm?

Good luck and I pray for the best.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Joined: Aug 2008
Posts: 100
TomT Offline OP
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Yeah, I wish I could make it all go away too. Last time through chemo she had Zofran, Ativan and Compazine for nausea. I think about the only thing that seemed to help was the Zofran but I think they felt much of her vomiting had more to do with gagging on the thick saliva. I know we have a little bit of everything left so will stock up tomorrow.

The Alimta (also know as Pemetrexed) looks like it has most of the same side effects of most chemos. It says very common side effects are a decrease in white and red blood cells, nausea, vomiting, diarrhea, hair loss, loss of appetite, inflamed mucous membranes, skin rash, abdominal pain, edema, fever, weakness, fatigue, difficulty breathing, cough, constipation and headache. These were all the "very common" (greater than 10%) side effects with some more serious "common" (between 1% and 10%) side effects up to heart attack, irregular heart rate, and renal failure.

They did give her a B12 shot, put her on folic acid and steroids (guess no more baseball for her) as part of the regimen. On the plus side, she is about 15 pounds heavier than last fall when they cancelled the scheduled Cisplatin and went with the less lethal Carboplatin/Taxol.

At this point they no longer plan on removing the node under her arm. We met with the surgeon that would have done the removal but was cancelled when the results of the most recent PET scan came back. They felt that if it had only spread to one or two spots, that they would remove surgically but with what looks like spot on her rib, nodules in her lungs and now a glow at her "portocaval lymph node" (my understanding is that is behind or athe back of the stomach), they do not feel that it makes sense to surgically chase it.

Thank you for the prayers.


Tom-CG to wife, Pam 46@dx
Stage IV Tongue Cancer T2N2C
Dx 6/08, Surgery 7/08, 3 nodes positive
9/08 33IMRT/7Carbo/Taxol
4/09 node biopsy positive, mets to lungs/stomach
5/09 Cisplatin or Cis/Alimta study
6/09 Cis/Taxotere
9/09 Taxotere
1/10 Xeloda
3/10 Cetuximab weekly
6/29/10 lost battle

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