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#103876 09-20-2009 04:42 PM
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Watt Offline OP
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Hi everyone,

I just needed to vent because I'm sitting at home with my husband upstairs. His last chemo ( this is the round after 33 radiations and 3 chemos concurrent) which was three different drugs, 5fu/docetaxil and cisplatin all together didn't go well at all. He came out of radiation with good results. Not too bad mouth sores and was able to gain 10 lbs the month after treatment and eat some foods and then they decided to do 3 more rounds. He has every side effect possible from the 5fu and can't swallow a pill or water. He has red spots covering his body and basically other side effects. He is now 2 weeks post chem TREATMENT and he isn't getting better. He does have the PEG, thank god!Even though he lost 4 lbs in two days. I'm just having a hard time watching him go down hill when we got through the radiation and chemo. Of course they won't be giving him the 5fu ( the culprit) and we have asked for a second opinion re further treatment. His PET scan is Oct 28th. to see if the scan is clear. He still has small nodes so he might also get surgery. I'm just having a hard time dealing with the round the clock care and the morphine and the drips and trying to get him bathed.I kept it together the first round but I feel so bad for him.His mouth sores are not healing at all. We have to decide whether to continue chem treatments( I would feel awful if the cancer reoccurs and we didn't do everything) How much suffering is he suppose to go through? We don't know yet if the pet scan is clear. I see a lot of people on the forum who didn't get these extra rounds of chemo ( mind you, the research says that these three drugs are the most effective together in treating this cancer mostly as induction chemo.) Any body out there have a bad experience with 5FU?

Vanessa


Jeff age 49 DX 5/8/09 Tonsil cancer T2N2BMO. Tonsillectomy 5/14/09. TX: Cisplatin 3x's every 21 days w/ 33 Rad concurrent. 2-3 nodes on right neck affected. PEG 7/10/09. Chemo/rad start 6/12/9, TX finished 7/28/09. Extended TX
3 more chemo/Cisplatin/5FU/Docetaxil start 9/11, Clean PET 10/29/09.
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Where is he being Tx'ed?

Was he tested for HPV?

Was he a tobacco user?



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.
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Watt Offline OP
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David,

Not a smoker and no he hasn't been tested for HPV. I think I get where you are going with these questions. They won't test him for HPV b/c they say it is irrelevant to the treatment, however I will address it again during the consultation with the new doctor this week. I realize if it is HPV then reoccurance of the cancer is less seen? We would have to probably pay out of pocket b/c Kaiser won't pay for the test. I hadn't thought of getting him tested until you brought this up just now. That might help us decide whether or not to continue more treatment. He is really suffering and not improving at all from that last chemo....
Vanessa


Jeff age 49 DX 5/8/09 Tonsil cancer T2N2BMO. Tonsillectomy 5/14/09. TX: Cisplatin 3x's every 21 days w/ 33 Rad concurrent. 2-3 nodes on right neck affected. PEG 7/10/09. Chemo/rad start 6/12/9, TX finished 7/28/09. Extended TX
3 more chemo/Cisplatin/5FU/Docetaxil start 9/11, Clean PET 10/29/09.
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Vanessa,

I can understand how difficult this is as my husband had the same three drugs (similar diagnosis)as an induction treatment (to shrink tumor and minimize likelihood of distant metastisis) before he started chemo/radiation. We called the 5fu our own name- 5 f@#$ you as it seemed to cause most of the side effects. But you're correct- they're usually done as induction chemo. I can see how demoralizing it would be to get through the chemo and radiation so well and then to get so sick. My husband found the first round of the 3 drugs to be more difficult than the second. The meds to manage mouth sores and nausea helped. On the other hand, he had a more difficult time than many when he got near the end of the regular chemo/radiation which I believe is because of the induction chemo. He was really sick at a couple of points in his treatment and had pretty extreme side effects. We have wondered if his treatment would be different in the future because he is HPV+. BUT- he is cancer-free nearly two years following treatment and doing really well.

It sounds as if they have some reason to believe that these 3 drugs will help your husband's prognosis. Maybe I missed the reason for them in your emails. As difficult as it is to go through this, we have never regretted the aggressive approach because reasons for given to us for why the team chose that approach - and, we don't know if he'd be doing as well if he hadn't had it. But it was so difficult to see him sometimes and I had to remind myself that we could get through this and that is was just a matter of days or weeks in what we hoped would be a long lifetime.

My thoughts are with you and your husband- Sophie


Sophie T.

CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+
induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
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Watt Offline OP
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Sophie,
Thank you for your response. It has helped a lot to give us strength to move ahead. I think our main complaint is our doctor hadn't prepared us. We are willing to put up with most anything to be cancer free,but to be mentally prepared would help. I can't go into detail here but simply we have had to ask for meds, blood tests, etc... when I would hope the doctor would do some possible preparation or thinking ahead. We are seeing another doctor tomorrow which we are very happy about. Right now, Jeff's blood count is really low. He just received a shot to help boost it and so I hope to see some improvement in the next couple of weeks. This was the first time I have seen him cry. It has been very hard..but thank you for reminding us why we are doing this.

Vanessa


Jeff age 49 DX 5/8/09 Tonsil cancer T2N2BMO. Tonsillectomy 5/14/09. TX: Cisplatin 3x's every 21 days w/ 33 Rad concurrent. 2-3 nodes on right neck affected. PEG 7/10/09. Chemo/rad start 6/12/9, TX finished 7/28/09. Extended TX
3 more chemo/Cisplatin/5FU/Docetaxil start 9/11, Clean PET 10/29/09.
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Well I disagree in some respect that an HPV positive test wouldn't perhaps alter a treatment plan especially if they had already removed his tonsils and put him through concurrent radiation and chemo. Hell Moffitt told me 3 years ago that had they known I was HPV+ (they didn't test me until post TX) that they may have altered my Tx and they never discussed post rad/chemo chemo. It only stands to reason that if at least 2 studies have concluded that HPV+ responds better to (existing) Tx which is usually NEVER more than surgery and concurrent chemo/rad then it may be proven later that less Tx is all that's needed to treat HPV+ SCC and certainly not MORE Tx.

If it was me I would want to be tested for HPV and another opinion from a CCC before I was subjected to PERHAPS unnecessary torture.


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.
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Watt Offline OP
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David,

Thankfully we are seeing the head of oncology in another facility for a 2nd opinion. We are also going to request to be tested for HPV and hopefully they will pay for it. We are not moving forward until we can get the 2nd opinion and maybe a third. ( I LOVE THESE LITTLE FACE ICONS)

VANESSA


Jeff age 49 DX 5/8/09 Tonsil cancer T2N2BMO. Tonsillectomy 5/14/09. TX: Cisplatin 3x's every 21 days w/ 33 Rad concurrent. 2-3 nodes on right neck affected. PEG 7/10/09. Chemo/rad start 6/12/9, TX finished 7/28/09. Extended TX
3 more chemo/Cisplatin/5FU/Docetaxil start 9/11, Clean PET 10/29/09.
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Hi Vanessa,
My husband Dan had 5-fu administered 2 weeks ago. He is on his second course of treatment and both times the 5-fu caused significant mouth sores followed by thrush in the week following treatment. He began taking a anti-fungal med last Mon. and slowly but surely it is healing. He was scheduled for 3 more weekly cisplatin treatments but this was put on hold until the thrush is cleared up. Side effects have a way of creeping up on you and I think all you can do is react as quickly as possible. It's a helpless feeling and both of you really need to have a cancer care team/provider that responds quickly and answers your questions and concerns.


Base of tongue spread to 2 lymph nodes.stg?? Dx 5/5/09 peg
Tx started with 35 rad, 7 weeks cisplatin, 2 weeks 5-fu.
completed second course of tx with reduced dose of cisplatin &
5-fu. All clear
Post radiation swallowing difficulties 12 years later
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Watt Offline OP
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Thanks for the feedback regarding your husband. We had Jeff on anti-fugal meds as well as using the magic mouth wash. It ends up his white blood count was extremely low. We asked to have his blood drawn and tested. The doctor was really slow getting back to us. He had the results Friday eve and got back this morning.
He was given a shot in the stomach to help with his blood count and given antibiotics. I think we will now start seeing an improvement. Your right, we need a care provider to think ahead and act quickly.We have A consultation tomorrow with another provider.

Our thoughts are with Dan.

Vanessa


Jeff age 49 DX 5/8/09 Tonsil cancer T2N2BMO. Tonsillectomy 5/14/09. TX: Cisplatin 3x's every 21 days w/ 33 Rad concurrent. 2-3 nodes on right neck affected. PEG 7/10/09. Chemo/rad start 6/12/9, TX finished 7/28/09. Extended TX
3 more chemo/Cisplatin/5FU/Docetaxil start 9/11, Clean PET 10/29/09.
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Posts: 8,311
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Vanessa,

IMO Jeff is in good hands (yours that is).


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.
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