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

I'm sure there's a better way to do this - - - I just dunno what it may be.  Tackstrip's posting was at the bottom of an old thread - trying to start  a Forum topic for Tackstrip.  Here's tackstrip's post: 

 

New

Well its been almost 3 months since I last posted here. Made it through my Radiation Treatment. It got tough, voice did get a little better month back but now I am at whisper again. I feel like I can't catch my breath when I try to talk to some one. Like something not working right. Starting to get the mucous build up again to. But I am eating pretty good again. Go for PET scan next week just to see where were at. Then maybe start me on chemo for the spots they found on lung in November. Just looking for an ear.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009
Another Tackstrip (Wayne) comment:
 

I know I wouldn't take care of a new thread like I should. As far as disscussing concerns with my MD's I really don't have anymore. I was 600 miles from home getting top notch care from University of Mich, cancer center. They diagnosed me, got me ready for radiation and gave me radiation treatments. Now I am back home in one horse town, Ironwood, MI. in the upper peninsula. I have to drive to Marquette for PET and have seen a new oncologist here in Ironwood. He is the one who ordered PET and said I should get chemo. I am only couple monthes out of RT but dont feel like I am getting any better anymore. I hope I am wrong. Just have to hang in there I guess. Not married, buried mother in November. Have daughter in Cincinnati but don't know how I could get everything transferred down there. She wants me to but I feel like burden. More later. Wayne

 

And a note from Alligatorpointer, who kindly suggested Tackstrip's post needed a thread of its own:

Wayne, new threads come and go fairly quickly on this forum ... you do not need to "take care" of a new thread. Infact, you can start a new thread each time you post something related to yourself. It just helps those who want to respond avoid having to scroll all the way to the bottom of an old thread that was started by someone else to find your latest comment about what is happening with you. Your current situation is one that forum members might be able to provide some words of experience and wisdom about if they can find your posts. I am aware of how isolated the upper peninsula of MI can be for having access to medical facilities. Staying home in a remote place like Ironwood is not a good thing if it means that you are all alone when dealing with a serious health crisis. Having family and friends nearby is something that can make undergoing cancer treatment so much easier to endure. If your daughter wants you to move closer to her in Cincinnati, then getting your medical records transferred to a major cancer center near her is something that should simply require sending a request to your current doctors. You have a computer, so look online for a major cancer center in Cincinati that is highly regarded and make some phone calls to the doctors in that center who have the credentials you need. Set up an appt. and call your current doctors to send your records to the new doctor. If I were your daughter, it would not seem like a burden to have you live near (or with) me during this time when you need to be close to those who love and care about you and within easy access of major medical facilities. Please consider giving your daughter the gift of close proximity to you at this time when she wants you near so that she can help tend to you. Then introduce her to this forum. The information and support provided by the good people who post here is a source of strength for caregivers, too.

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

Well said, Alligatorpointer!

 

Wayne,

Burden?!? No way, I'm sure.  I would think it would be a blessing to your daughter to have you with or near her. 

As for a new cancer center, it depends on how far you'd like to travel.  I've been to the Barrett Center (UC - University of Cincinnati Hospital).  Seemed good - I had a tough time deciding between that center and one that was very close (less than ten minutes away) to my home, then went with the one near home.

Columbus and/or Cleveland might be too far a commute for you from Cincinnati (Ohio State University/Cleveland Clinic).  There are a number of smaller centers (like the one I went to, about 20 minutes from Cincinnati) in the area, as well.

Ladylacy
Posts: 481
Joined: Apr 2012

When my husband was first diagnosed with laryngeal cancer he underwent radiation and chemo.  The first PET/CT scan said he was NED.  But 2 months later he was having trouble breathing, mainly shortness of breathe.  We saw our ENT asap and he looked down his throat and said his right vocal cord was paralyzed and that he needed another biopsy right away and that he would put in a trake.  Well the cancer was there on his laryngeal again and according to the specialist H&N doctor, it never went again.  Surgery was done a month later to remove the larynx.

Thankfully we are not far from Emory Winship Cancer Center in Atlanta GA and that is where he was treated and we only live 5 minutes from our local doctors and hospital. 

Family is important and if your daughter wants you near her, and you can, I would do it. 

Best wishes, Sharon

debbiejeanne's picture
debbiejeanne
Posts: 2428
Joined: Jan 2010

tackstrip, i live in cincinnati and go to the barrett center and am quite pleased with it.   it is a very good center.  i've been going there for over a year.  i had laryengel cancer and now have a trake.  i've been thru a few surgeries but now on my way to recovery. 

there are some bad areas in cincinnati that you definitely want to stay away from, Winton Place being one of them.  YOu could try to apply for section 8, they will pay your rent for you.  I'm not sure how that all works but I know it's an option.

You are in my prayers.  btw, let your daughter take care of you.  i would want to take care of my dad at a time like this.  It will help her feel better being a part of your treatment.

God bless,

debbiejeanne

phrannie51's picture
phrannie51
Posts: 3725
Joined: Mar 2012

First....your daughter said she wants you to come....why not trust her thoughts on the subject, you'll probably be happy to find out that you are NOT a burden, but a welcome dad....I'm sure my dad would have felt the same way as you do, but not for long once he cozied into my home. 

I went and took a look to see what is in Cincinnati for cancer care, and lo....there is a University Cancer Center there....perfect!!!  Transfering records from one hospital to another these days, in a world of high tech communications is a snap!  Call the cancer center there, and ask them what all they need....they can probably email you the list of what they want, and where to send it....and you can request it be sent from the U of Michigan.   Deed done.

You are only a couple of months out of radiation....healing is SLOW from rads.  Even my snake skin was still visible on the outside of my neck at 2 months out, who knows what it looked like inside my throat.  I just know that at two months out of radiation I was still very tired, still had to be picky about what I put into my mouth because some things just stung.

I agree with Pam....see if your daughter wants to join this site....there is SO much support here.....smart, kind people who are always willing to help.

p   

alligatorpointer's picture
alligatorpointer
Posts: 131
Joined: Jul 2012

Pam,  just wanted to let you know that I truly appreciate your kind efforts to bring the conversation with Wayne (tackstrip) into this new thread.  I posted a final comment on the old thread with a link to this new one.  Hopefully, he will find it. 

tackstrip
Posts: 14
Joined: Oct 2012

Well I sure was surprised to find my new thread already started for me. I owe you all big time. And would like to thank Pam, phrannie, and alligator pointer. I will try to keep as up dated as possible. I go for PET scan onthe 12th just to see if cancer is shrinking, growing or what. Then they said they would probably want me to start chemo for the 2 spots they found in my lung in Nov. The only treatment I have had is radiation for the tonsil cancer. That was starting to feel a little better this last month but seems to be regressing again. I did find a staging number in records before they found the metesstes to the lung. Maybe someone can translate? T4bN2bMO   I know it would be different now

 

 

 

 

 

 

 

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

The SuperThread (first pinned thread on this forum has tons of great information, like staging for instances.

T4b: STGIV, the b indicates various definitions depending on the location..
N2b: Metastasis in multiple ipsilateral (same side) lymph nodes, none more than 6 cm in greatest dimension.
M0: No evidence of distant metastasis.

Here is a pretty good and detailed article on staging that I pulled from the SuperThread;

Staging

Best,
John

tackstrip
Posts: 14
Joined: Oct 2012

Well got my PET scan today. I do not expect it to be clean but I am hopping something looks better than it did Dec. Hoping tomor on tonsil shrunk and spots on lung didn't get any worse or more. Started checking into low income housing in Cinn. area. Think I might need an address to apply for the medical assistance. Not sure though, looks like a lot of red tape and paper work changing things from Mich to Ohio. Maybe get referal for doctor first? 

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

Like anyplace else, there are some low income housing areas you do NOT want to move to in the Cincinnati area.  I'm sure your daughter will be able to steer you clear of undesireable areas. 

Hope you get the news you're hoping for on the scan - will you have to wait long for results?

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

Just watch out for turkeys being thrown from the helicopter...

Thoughts and Prayers your way....

John

tackstrip
Posts: 14
Joined: Oct 2012

Got my results for PET scan today. Surprisingly he said the tonsil looks good. But as expected the lung is getting worse. They want to start chemo right away. They are going to do, Cetuxmab  every week.  1 day, Corbaplatin - every three weeks  1 day, and 5-Fu   for 4 days - every three weeks, they need to install a port for this one.

Does that sound about par with other lung cancer patients? He said I would have to do this indefinitely. With breaks and time off here or there says not time limit. Are side effects worse with this chemo than with the radiation? I am hoping not. This kind of screws up my move to Cincinnati as I can't take chance of medical assistance lapsing and getting no treatment. So I will start chemo up here, where God lost his toothbrush, in Ironwood and hope I can still get transferred down to my daughters. Or I go it alone, up here. It wouldn't be the worst thing in the world I guess. Well thanks for listening, any thoughts or ideas please let me know. Wayne

 

 

 

debbiejeanne's picture
debbiejeanne
Posts: 2428
Joined: Jan 2010

Wayne, so sorry to hear the bad news.  I'm also sorry that you won't be able to move to cincinnati to be with your daugther.  i will keep you in my thoughts and prayers.  sending good vibes your way.

God bless,

deb

donfoo's picture
donfoo
Posts: 1238
Joined: Dec 2012

The description of what the treatment regime you have described indicates your treatment is going down the pallative rather than curative path. This seems to be the generally prescibed action when there is metastasis in the lungs. I do read a lot about lung biopsy and such during diagnosis but and somethings radiation to lung but not so often.

I have spots on my lungs but what exactly it is has still not been determined. Tumor board agreed so moved staging of Mx/? to M0 which sent me down the curative path, thank goodness. Latest CT still shows them there after two full rounds of induction TPF so my thought is it is not cancer. Will hear back from MO and pulmonology and tumor board soon on this along with reviewing chemo-radiation regimen.

tackstrip
Posts: 14
Joined: Oct 2012

Well I was suppose to start my chemo on the 26th, but I came up with so many additional questions for my doctor he decided to put back until April 2. He didn't want to start in middle of week because 5-Fu is a 4 day treatment. Although they are doing this specifically for my lung I would think it would help my tonsil also. Hoping side effects are minimal as I have enough from the radiation. If you think of anything I should do to prepare for chemotherapy let me know. I will bring water and something to read. Don't think I will be there more than a couple hours. But I will find out! 

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

Sit close to the rest rooms... As a hint, they labeled me the Pee King on my first day there...

Also, bring food..., once the regulars in the know crack out their lunches, you'll be starving..

I had Cisplatin, Taxotere and the four day 5FU for STGIII Tonsil Cancer...

Stay very well hydrated and take in your calories..., that's about the best advice I can give you...

Oh and maintain a positive attitude, and keep a good (abi-normal) sense of humor...

JG

 

tackstrip
Posts: 14
Joined: Oct 2012

Well I will certainly try to keep my attitude and sense of humor  top notch. Talking with the friends here makes it easier. I wish my voice was better but seem to get short of breath talking to much so won't be able to tell any good jokes, but will be looking forward to the chemo doing some good.

Wayne

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