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FINALLY HAVE A DIAGNOSIS AND PLAN

luv4lacrosse's picture
luv4lacrosse
Posts: 1409
Joined: Jul 2010

Hope all is well with you today. Yesterday I met with my Onco Doc, and I guess it went better than expected. I have Metastatic Disease in my lungs from my original SCC of my Tonsil and neck nodes. He says this is better for me VS A new primary in my Lung. Surgery is a no go as with Lymph Node involvement in my Mediastynum, it would be pointless. Radiation is not recommended as damaging my lungs would create more problems than I would want to deal with. I decided on a clinical trial using 3 drugs that are all considered Tier 1 drugs and all FDA approved. On the 24th I will start with an infusion of Carboplatin, followed by a 4 day infusion of 5FU via "man purse" and then an infusion of Cetuximab. The Cetuximab is the focus of the trial for two reasons. 1) Adding it to the two other drugs, and the study is focusing on the US version VS the Europen version from Eli Lilly.

I will do a totsl of 6 cycles over a 22 week period, getting a "reconissance scan" after the completion of 2 cycles. I can stay in the trial as long as there is not tumor growth greater than 20% or new tumors showing up. If I have to come off the trial, my Onco says he has up to 5 other treatment regiments he can try.
Survival was not really discussed, but he said "you can plug yourself in for 2 more years, and we will go from there."
Not cureable, but look it as managing it like any other chronic health condition, IE: Diabetes, ETC.

Anyone else have a similar story to share??

Best

Mike

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

no experience with the other two drugs, but Cetuximab = Erbitux. plenty of experience with those mouse antibodies, lol.
I was in a research study using Cetuximab and rads for my HPV-16 tumor, and had 8 infusions. in addition to the standard Cetuximab rash over face and upper body, it lead to bizarre infections of both fingernails on my middle fingers. it took four different antibiotics (including IV), a whole lot of neosporin, and a month to clear up the infections.
but all-in-all, the Cetuximab was bearable. the side-effects do go away fairly quickly (compared to radiation side-effects), without the potential kidney damage and/or hearing loss from platinum-based chemo.
although I hear that for those who come up allergic to Cetuximab, the rash can be horrible. for me, it was minor discomfort and a whole lot of ugly.
oh, and Cetuximab really drains your body's potassium and magnesium levels--had to get a couple of extra infusions for both.

best wishes to you! sounds like you've got a great attitude, and that will take you far.

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

Go Mike Go. great to hear you have a plan. you have done a fight before so we know you can do it again and again and again if needed.

wish i has experience for you, so i will keep you in thoughts and prayers for you and your family

john

longtermsurvivor's picture
longtermsurvivor
Posts: 1837
Joined: Mar 2010

robinleigh is one such. Her husband has been on clinical trials formquite awhile now, and the last I spoke to her was doinf quite well. She is here from time to time, so you might PM her to get her attention. I did see her post on the board last week. Robin is very knowlegeable in this area, has extensive experience with the Lance Armstrong foundation, etc, and shes quite helpful.

best to you

Pat

longtermsurvivor's picture
longtermsurvivor
Posts: 1837
Joined: Mar 2010

duh.

tuffenuff's picture
tuffenuff
Posts: 277
Joined: May 2012

Having a plan at least gets your mind in the right place. Much better than the wondering we tend to get bogged down with.

How long ago was your original diagnosis and was it HPV positive?

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

Similar to what Linda and I had...

I had three cycles infused of Cisplatin, Taxotere and 5FU (man purse for four days each cycle), then seven weeks of Carboplatin concurrent.

The Erbitux I have read is one of the main drugs they use with good results on mets.

I can say that the secondary tumor that I had, completely dissolved away with the infused Cisplatin, Taxotere and 5FU even before I started the Carboplatin. It has not shown on any scan since....

So hoping that you get excellent results from the trial.

Best,
John

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

I was stage four - two lymph nodes involved - red flag went up when I found a really big lump sticking out of my neck. During my induction chemo (CIsplatin, Taxotere and 5 FU), You could see (and feel) the great huge lump get smaller.

Very glad you've got a game plan in place. Git 'r done!

katenorwood
Posts: 1863
Joined: May 2012

Mike,
I personally haven't done any chemo as of this date. But I have a few ACC friends in trials...and are handling it better than expected. They have time off with their families inbetween treatments. And as far as getting kicked off the trial...one day at a time with these issues. You have a great team working with you. Stay pumped that this is gonna work...and remember we all have your back ! Katie

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I did erbitux and rads but jot the other drugs you mentioned. Erbitux gave me a rash but that was about it. I did it weekly for 8 weeks. I have my first post treatment PET/CT in 2 weeks so we'll see how it worked for me. My dr did say that he has patients who are on it as a maintenance treatment and (his words) " it's amazing to see the tumors just melt away"
I pray this will be the case for you.
I know some people have finger and toenail infections related to erbitux but out of my 4 buddies(I make 5) at chemo, only 1 of them had this happen to them and hers wasn't severe. We were all on erbitux and 2 of them were on other meds too. Not the lady tho, she was just on erbitux. Just trying to give you some statistics :-)
Good luck with your treatment and please keep us posted.
Take care,
Billie

CivilMatt's picture
CivilMatt
Posts: 3094
Joined: May 2012

Hi Mike,

Glad you have a plan, I like what the doctor said (he sounds hopeful and positive).

I also used the Erbitux, great rash, loaded pimples like a teenager.

I wish you the best of luck and as smooth of sailing as possible.

Best,

Matt

Crazymom's picture
Crazymom
Posts: 318
Joined: Nov 2011

What stage was you tonsil and neck nodes. I have had tonsil and neck nodes. I am six months out from radiation and I had 6 weeks of Carboplatin and Erbitux. I had no problems with the Carboplatin, but bad rash from Erbitux. It went away a couple of weeks after I finished taking the Erbitux. My tumors were practically gone after 2 weeks of the Erbitux.

Praying for you.

I have a hard time believing that the original tumor took 18 months to move to your lungs. I guess I am not that familiar with how this cancer works. I would of thought it would have happenned sooner. Keep fighting and enjoy everyday you have.

Ann

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

2009: Round 0: Voice Therapy (really!)
2010: Round 1: Radiation.
2011: Round 2: Total Laryngectomy.
2012: Round 3: Radiation + Erbitux + Cisplatnum.
2013: Round 4: ???

Round 1 was the worst. The only problem I had with Erbitux was the hassle insurance gave me over it. But that will be the subject of another thread. Rick.

D Lewis's picture
D Lewis
Posts: 1547
Joined: Jan 2010

Mike - fight on. You can get through this. So glad you have options.

Deb

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

Wonderful you got a plan...

I had radiation and Erbitux only ...nothing else...and I am now 8 months out and had my NED already! My primary tumor melted away .....

...I had the WORST reaction to Erbitux ....onc said very rare, but I was "the worst" he had ever seen ..so I'm sure you will get the norm reaction..but my oncologist also said a reaction just means the drug is working as it should..

Whispered a prayer for you right before I hit post!! Prayed your trial is so successful you come back cleared! :)

Best to you Mike,

Tim

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Really, a man-purse! I don't where we're gonna hang out when you get a man-purse............ but we'll figure it out.

Sounds like a good plan Mike.

Postive thoughts and good mojo headed your way!

Greg

luv4lacrosse's picture
luv4lacrosse
Posts: 1409
Joined: Jul 2010

Not to worry on the man purse, the wife will hook me up with Kate Spade or Coach.

Might have to hang out at the "foo foo" club.

Mike

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

I strapped it on like a shoulder holster, over the shoulder..LOL.

That was usually good for a few looks.

If I wanted to have fun, I would wear it as a fanny pack, go to Disney, wear the Aloha shirt, sandals with black socks and didn't use deodorant for the entire time....

I blended right in, LOL....

JG

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

Mike,
I am glad to hear you have a plan. I pray that your treatments go successfully. It is amazing how much support you have here. We are all pulling for you. I am glad to here you are up for the challenge.

Tonsil Dad's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

Nice to hear you have finally got a plan in place Mike, I have
faith that everything will work out for you.
The Lord works in mysterious ways, and He will make this
trial work for you.

Have faith and stay positive.

God bless
Tonsil dad,

Dan.

osmotar's picture
osmotar
Posts: 956
Joined: Jul 2011

I had what you refer to the "man purse", your a bit more polite than what I called the 5fu beast that I had to wear from my monday all day treatment to friday, I could'nt wait for 2pm on fridays to have the beast removed. It wasn't the chemo it was the inconvience in having to sleep , drive, etc with that thing on.

Sounds like they have a plan of attack for you,best of the best of my mojo coming your way.

Linda

hwt's picture
hwt
Posts: 2011
Joined: Jun 2012

Mike,
So happy to hear that you have a plan and options. I have been away from the site but saw your post that you are in Eureka. Are you using St John's? I am in Creve Coeur, had my surgery at big Barnes, tx at Barnes West and currently neck massage therapy at Mo Bapt. otherwise spending my time at St Lukes with my Mother(87) they found an ulcer and biopsy was malignant. Maybe found incidental to what brought her to St Lukes. At age 87, I think we would have been better off not knowing. When the ONC mentioned radiation as an option if worsened, I burst into tears. I would not dream of putting my Mother through that. She's 87 and frail, subject just still too raw for me even though I know rad of stomach different from H&N. Thoughts & prayers are with you. My cousin did a trial at St Johns 8 years ago after he was told to get his affairs in order due to mets melanoma...8 years later still NED!
Candi

luv4lacrosse's picture
luv4lacrosse
Posts: 1409
Joined: Jul 2010

I am have been and continue to have all of my treatment at Siteman Cancer Center / Barnes Hospital. My wife works at St. Louis Children's Hospital and our medical insurance is through BJC. We love the folks at Siteman, and so far so good with my treatment outcomes.

Mike

hwt's picture
hwt
Posts: 2011
Joined: Jun 2012

You are in good hands. They are ranked top 10 in the country. My docs downtown Barnes are Nussenbaum and Diaz.

hawk711's picture
hawk711
Posts: 532
Joined: Jan 2010

I have a friend who did a clinical trial 7 years ago and he's going strong right now. He told me clinical trials have to be done before processes are approved for actual treatment. I am glad you have a plan and can get going on the cure.
all the best to you
Steve

luv4lacrosse's picture
luv4lacrosse
Posts: 1409
Joined: Jul 2010

I had my port placed today and now it finally feels like I am getting started. To make my day even better, my wife and I ran into Greg, (Greg 53) and his wife today. Nothing like getting good mojo face to face.

Good to see you my friend!!

Chemo starts on the 24th, so if you have any good luck, mojo, a lucky keychain or something else laying around the house, rub it 3 times and send me some good luck.

Mike

KareGiver
Posts: 291
Joined: Apr 2011

that a port would become one of your best friends...when you get those CTs every other treatment, they'll use it too. Thinking of you (and now AdventureBob among others)!

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

There you go..."good luck" already....

My birthday is February 24th.....

Best,
John

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

DON'T get me down - I love rainy days. And I'm glad you crank the fight up a notch starting Monday. I have a hate/love relationship with chemo, but I know the "good" feeling of getting the treatments underway. You know what's next - drink, drink, drink, pack a snack, laptop and reading material, dress warmly, and get ready to jump in with both feet.

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

I hate that you are having to go through this again, but glad you are getting started and have a plan of attack. I am so impressed with the fighter in you. Kick some cancer bootie.

D Lewis's picture
D Lewis
Posts: 1547
Joined: Jan 2010

Holding good thoughts for you, Mike, today and every day. Especially Monday! Fight on.

Deb

Jimbo55's picture
Jimbo55
Posts: 572
Joined: Jun 2010

Mike, all the mojo I have is coming your way. Keep fighting this thing and stay strong. I'll be keeping you in mind on the 24th. Cheers

Jimbo

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