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cureitall66's picture
cureitall66
Posts: 879
Joined: Aug 2012

Well, after a few obstacles(yes HPV, no HPV, yes HPV) & (stomach scope completed due to hot spot lit up on PET...doesn't appear to be anything, but took biopsies of stomach wall..waiting on results), we are looking to get this treatment started....MONDAY!

My loved one was diagnosed with Stage III / IV, BOT SCC, 2 lymph nodes involved to neck, HPV+. With all the ups and downs of finding out he had cancer about a month ago, it's time to get this journey started. The plan of Tx is:

1. Staying positive.
2. Chemo(Carboplatin with Paclitaxel)every Monday for 7wks and Radiation 5 days a week for 7 weeks.
3. Having Faith in our doctors, treatment, the journey, and God!

Anyone use this chemo and offer any experiences?

Thank you to everyone for sharing with us your experiences during the beginning stages of this ordeal. So glad to have found this site. Feeling alone and scared during these times is very hard...having you all here that have shared those same feelings and offered the comforting words, means a great deal. Looking forward to sharing more along the way. Tips would be greatly appreciated.

God Bless us ALL during OUR journeys...Love you guys :)

ditto1
Posts: 634
Joined: Mar 2012

Yes this is a great site with great people to help. As for me I was dx BOT Stage IV, 2 lympnodes back in March 2012. I had 2 Cisplatin 3 weeks apart and 9 Erbitux in conjuction with 33 RADs. To say it was tough at times is an understatment but over all for me it was very doable, however as you know by reading these blogs everyone is different. Just do your best to follow the old cleche "ONE DAY AT A TIME" because in reality thats just the way it is. You will find your Ground Hog Day approach to life that John Skiffin reminds us same old same old do it again do it again approach to this beast. But one day you wake up and the same old has changed you are done with the treatments and its time to heal. Time will go slow and time will fly by,, you will deal with both sensations. But the good news is the treatments more often than not can beat this disease and Diane and I will be praying for you all. Im now 9 weeks out and my CT scan and Doctors believe they got the cancer taken care of, I hope there right. Good Luck > PS Look forward to you joining the NED Club.

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

Cris, I'm sure your hubby will do fine...60 - 80% is attitude and determination. Keep him on that trak and you guys can handle anything.

As you know, I did have Carboplatin concurrent with rads, and in all honesty, carboplatin was very mild compared to having Cisplatin, Taxoter and then 5FU all at the same time.

Not saying those were terrible, but definitely less reactions going on chemo related.

Not the Taxol you are having is similar to the Taxotere, but different, so I can't say much on it.

And in reality, all of us react differently anyways....

Some like myself and others, the chemo wasn't bad at all...I never got sick one time. Others had a terrible go of it...but survived it and for the most part are all happy campers now.

Rads are just hard on you, no matter what...and again, some had a terrible time, others not so much.

Though I had not a lot more than a severe sunburn with peeling, others had it much worse.

Most all of us share the raw throat, some with some without a PEG. Again, myself and others had no PEG and survived just fine...others swear the would have died without a PEG.

Most all of us with rads have lost taste, saliva, body hair, some like myself (toe nails, LOL)... Eventually most have had all or very nearly all of that return..., well other than maybe a small strip of hair on the nape of the neck.

Now recovery of some of those, like taste and saliva can take a very long time, same with strength and not being easily fatigued... It took nearly two years for me to regain completely all of my taste and 95% of saliva.

Bottom line, we all go through it, or portions and most all of us make it through relatively unscathed in the big picture.

Stay ahead of the game on meds and hydration....

Best,
John

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

so after riding the yes/no/yes rollercoaster, you all finally got a definitive answer on HPV. wow, that must've been trying.
what gave the proof, a DNA test?
hope it works out to mean an easier path to NED...
best wishes to you both.

cureitall66's picture
cureitall66
Posts: 879
Joined: Aug 2012

Not sure how each lab does their testing, but the original ENT that we started out with in diagnosing him assumed he was positive, but had later told us the results came back negative. In the meantime, the U of M Hospital where he is planning his treatment had their lab test already underway. The results we got on line from them says it came back positive HPV 16. We're certain they know exactly what to look for and this is definite now... : )

Thanks for the well wishes. We hope all is well with you too.

phrannie51's picture
phrannie51
Posts: 3845
Joined: Mar 2012

that's precisely how I felt when they FINALLY started my chemo and rads...I had Stage III Nasopharyngel Carcinoma...(I say HAD with capital letters :)). It took nearly two weeks of canceled chemo/rad appointments for them to finally get the show on the road with me, and I went in happy, skipping, and ready to kick butt.

Like the people here say, the treatment treats all of us different. I had it realitively easy during radiation and the first 3 chemos....the 5FU turned and kicked my butt...but it's over now, and ya know...it kinda seems like a dream. One thing about past pain, is mother nature has a way of making it look easier once you're done with it....

p

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I found that the nausea was at its worst when either (a) my stomach was empty, or (b) it was full. So I learned to nibble: mostly crackers. I think it is a hint that the cancer center that treated me has Saltines available in many of its waiting areas. But as the saying goes:everyone is different. Of course, I also used the meds. Rick.

CivilMatt's picture
CivilMatt
Posts: 3083
Joined: May 2012

cureitall66,

Treatments start on Monday, your husbands October 8th was my February 6th. Make sure you have all the meds recommended, be prepared, and ask questions. Hopefully, he will have a journey with few and mild side effects (some people do).

Best,

Matt

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

now you are fighting back and that much closer to being NED!!!

Best,

Tim

luvofmylif
Posts: 344
Joined: Sep 2012

My husband has his port placed on Monday. We start the whole process of chemo and radiation on Wednesday. To say I am nervous and scared is an understatement. Don't want him to suffer with all the short and long term side effects I have read about. I know there will be a "new normal" but reading all the posts from you "veterans" helps because it inspires me and gives me courage for me to fight the fight with my husband and to be his support person.

Thanks to you all and wish you all health

Joan

Hard12Find
Posts: 208
Joined: Sep 2012

Knowing you are moving forward with treatment. I just completed my first week with radiation and erbitux, however my radiation oncologist insists I go to cisplatin next tuesday, so know you are not alone on your journey. May god keep us and care for us all....
Jim

luvofmylif
Posts: 344
Joined: Sep 2012

Amen to that. God is good most definitely.

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