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Five Months Out - Scans & Labs

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

I have just completed my 2nd set of scans and lab work since finishing treatment June 2009. SCC stage III right tonsil and a lymphnode, all HPV derived....

Nine weeks of Chemo (Cisplaten, Taxotere and 5FU) followed up with seven weeks of concurrent Carboplaten once a week and 35x Radiation exposures preceeded each day with Amifostine injections....

All is clear, no signs of cancer..... I'm still a little below the low normal on WBC and RBC but everything else is back in the normal ranges.....

My taste is still off, but nothing compared to others here.... I can taste most everything again, but most taste deminishes within a few bites, not everything though. I didn't need a PEG which was good. I have no problen eating, other than learning my new taste for differing foods and drink. Water is by far the best thing for drink....at one time it just tasted like plain old sweat, very nasty.

Saliva is still hard to come by, especially at night. But I'm learning to live with a bottle of water close by at all times.

I hope all continues to stay positive and good, as well as the same for all of you as well.

God Bless,
John

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Congratulations, John! Great news is welcome to all!

Take care,

Joe

pk's picture
pk
Posts: 192
Joined: Aug 2009

I am so happy to hear that all is well with you. My husband is almost 5 weeks out of treatment, and seems to be progressing very well. He has not used his feeding tube for 2 weeks and will have it pulled next week. He looks great, is maintiaing his weight, and the fatigue is not quite as great as it was previously. He will not have a PET scan until the first of Jan. He continues to see his ENT regularily. Tomorrow he wants to try and go out for chinese food (which means chicken chow mein on rice), but this is the first time he has wanted to go out so I am very pleased. Thanks so much for your post.
PK

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

Thanks All,

PK, great that he is doing well....it was probably around that same length of time before I could try and eat something as well....several weeks after the radiation I was still mainly just doing water and Ensure Plus. Even with that I was needing to take pain solutions to swallow without pain.

I remember the first meal that I ate was a creamy shrimp pasta at Shells here in Tampa...which is actually ironic now that I think of it. I met a fellow survivor and member from here Hondo as he was here with is lovely wife, they were on a business trip for his work.

Oh, LOL, the ironic part is that we ate at that same restuarant on his visit and I ate the same meal again...LOL.

Again, I'm happy for your husbands progress and hope it continues to grow....it's a slow process.

John

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

This is great news glad to hear everything is well, I am very glad for you my friend.

Got to say I did notice that you were really enjoying that shrimp dinner at Shells; I wish I could have stayed longer in Tampa what a place to live. It is not very often you get to meet someone you only talk to by e-mail but I was very glad to meet you there in Tampa.

Keep strong and keep positive God bless

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

LOL, it's one of my favorites there.... I used to like the Conch Fritters, I haven't tried those since losing my taste, hopefully my taste is back enough to enjoy those again... My taste is still improving, it's just a very slow process....still haven't noticed much improvement with saliva production though....someday I hope.

I hope all is well with you and your family.

God Bless,
John

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

I use to like Conch raw fresh out of the shell with a little lime and salt. When I was growing up in Utila we would dive down about 12 to 28 feet and get them just off the reef, but then that was the old days. Did you ever try the Stoppers4 mouth spray it works really great for me. Hope to see you again someday when I visit Tampa may be we can do a little fishing. Good luck and Gad Bless my friend

pk's picture
pk
Posts: 192
Joined: Aug 2009

Where do you find this spray?

I'm so jealous of you FL folks. Living in Minnesota and heading into the winter mos. is not much to look forward to. We plan a visit in late Jan. and then in Feb. head to St. Simons Is., Georgia and stay until well into April. My husbands ENT said there is no reason not to stick to our plans. Bob will have a PET scan the first of Jan. Am staying confident that all will be ok. He has done so much better than many others during this hellish ordeal. 5 week out and eating - tube out tomorrow!!!
PK

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

I cant wait to be able to say that he is eating real food again, then when he begins to taste it for the food it is!!!
boy we sure tend to take that for granted!!

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Get it at http://www.drugstore.com/

It works very well for me have been using it for almost 3 years, I hope and pray it does you good as well.

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

Morning,

No, I haven't tried it yet, I'll order some this morning. I looked around locally with no luck.

I still love seafood in about any form...LOL. It took awhile to get the flavor back, but it's all good now. It took several months after the loss of taste to finally be able to eat Sushi and such again. More so because the rice was just too starchy and gooey. It seemed like I really had a problem with starchy foods, breads, pasta, rice. Most of that has improved now. I'm even finally stating to taste some sweet things again too...not that I need any of that, but occasionally I'll treat my self.

Tim, you are more than welcome to go fishing whenever you get a chance to come back here and have some time. We'll take the Hewes out and stick a few.... I'm waiting for it to cool off a little so the freshwater Specks (Crappie) will start picking up. It's still in the low 80's here most every day.

Santa, St. Simmon's is really nice from my understanding. I have a friend that has a condo there, and they just retired to it. Also, I have another contact that is a Captain and guide there if you need a contact.

We go vacationing up in the panhandle a lot to St. Joseph Island. They have some great rentals up there through Collins Vacation Rentals. You can rent a place right on the Bay or Gulf. We usually rent on the Bay, it's a place with a 100' pier in the back. I can fish all I want, catching Reds and Trout mainly...it's nice also because we can take the two labs...it's more their vacation than ours..LOL. Plenty of places to visit. They have some great fresh seafood and smoked Mullet close by also. MMM Smoked Mullet, a little Cajun Sunshine hot sauce and crackers, choked down with a few Corona's close behind..LOL.

Stay in touch and God Bless....
JG

santa6
Posts: 29
Joined: Oct 2009

Good for you, John. I am 4 weeks out from treatment and struggling some with phlegm. I had neck lymph with SCC - we never found the primary after dozens of biopsies and scans. Did verify it was HPV derived. Had a PEG tube put in for feeding before treatment began. So I was treated simultaneously from just below the eyes to my color bones with 8 weeks of chemo(Erbitux) and 33 radiation shots. Saliva is week and phlegm is strong. I just recently strated trying a bite here and there of food and taste seems to be somewhere between 60% and 90%, which I guess is pretty good from what I read elsewhere. Have any of you had any luck with Pilocarpine for improving salvia?

My bigger problem is emotional. I haven't had any follow up scans, no one has told me I'm cancer free, no one has told me about my prognosis. I'm not seeing my care team anymore except for periodic followups. I'm an emotional wreck. Family dr put me on Lorazepam for anxiety and Citalopram for depression, which could take 8 weeks to kick in. Did many of you deal with this? I don't know when I could possibly return to work, and I'm the CEO. Any thoughts or help appreciated.

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

I believe we all go through the depression stage a times, just don’t give up because life after Cancer is great. Somehow it makes you appreciate things that you might have taken for granted before. I love going home to the Bay Islands in Honduras for Vacation just wish I could stay longer and do more of the things I did when I was younger. But somehow just being there and seeing the place again gives me hope, find something in life that gives you hope and keep it in your heart, let it melt away all your fears. Don’t forget God; pray everyday not for your self but for others, I find this to be a great healing medicine for me.

My P.E.T. scan is next month in December, I am not worried, I been there so many times now it is just another routine

Take can and keep writing on CSN

pk's picture
pk
Posts: 192
Joined: Aug 2009

I understand from your post that you return to Honduras often. I am traveling at the end of November with a girlfriend (feeling kinda guilty leaving my husband but this was planned prior to diagnosis of SCC to the base of his tongue & 1 lymph node and he really is doing quite well) on a cruise. We will spend some time on Roatan and I'm excited as I have been many places in the Caribbean but not there. Any hints or ideas for me.

We face a PET scan the first part of Jan.(3 months out). We are like you - thinking that the best!!! Anxious to get it over and head to St. Simons for a couple of months to get out of the Minnesota winter. PK

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

You will fall in Love with Roatan; some of my family runs Anthony Key there. I grew up on the smallest of the three Islands the one called Utila my wife is from the other Island called Guanaja. My brother and I are hoping open a health place on Utila for people with Cancer or other health problems; he is one of those health nuts. The people on Roatan are very friendly and talk English; don’t drink the water unless it is in a bottle.

If you like swimming go to West end beach, if just site seeing any of the busses will take you around to see the place. My PET is schedules for December 4 an I too am looking to get that over with and hope is shows nothing has changes.

Take care and enjoy yourself in my home land. Remember Ice is water

pk's picture
pk
Posts: 192
Joined: Aug 2009

Thanks for the tips. I love the beach as well as sight seeing so I think we will be well taken care of on Roatan. Isn't it great that we can look FORWARD - life is good and it goes on even with BIG BUMPS in the road. Will keep you in my heart as you go forward.PK

I'm going to check out Anthony Key and see what I find.

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

Hi, Santa6.
Regarding your emotions: I was told during my treatment that it is very common for folks to become depressed once the treatment ends. For six or eight weeks you've been the center of attention, and all of a sudden it's over. You're cut loose and cast adrift.
Fortunately, I didn't suffer from any depression. But it was a jarring experience nonetheless. I was back at home (I'd stayed in Baltimore for treatment at Johns Hopkins) and everything seemingly was back to normal. But after what I'd just been through, normal was weird. No one but my loving wife was paying attention to me anymore or monitoring my condition, and I thought there should have been some sort of aftercare. But after awhile, that feeling passed.
FWIW, when they warned me that most people do get depressed after treatment, they said it was temporary. I hope this is the case for you.

--Jim in Delaware

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

It's coming up nearly a month since your post Santa6 and I am wondering how you are doing. I went through a very rough patch and was put on the anti-depressants, ant- anxiety and a mood stabilizer 2 weeks out from treatment (Left Tonsil Cancer 7 weeks IMRT and Erbitux). I felt much better emotionally within a couple of days of taking the new medications which I am still on now 8 weeks out from treatment.

I luckily don;t have to go back to work till I'm ready but struggled a little with the 'No Purpose now' syndrome. That wasn't a nice to be but this is also related to our schedule of healing. What we want and what we get are usually different so I have taken to the view to check my progress weekly (Not daily) and I get out or the house each day and take my laptop to a cafe and do some reading, emails etc. I sometimes pop into the office but will realistically not recommence work till after the Christmas break which is all of January for me.

I think going in and keeping in touch with the work is a good thing so you don't lose contact but also don't jump back in till you really are OK and maybe work fewer hours at the beginning to avoid a 'crash'. (Have a friend that tried to go back too early and he hit a brick wall..hard)

I will go in to have my PEG removed Monday and get the PET/CT Scan done on the Tuesday so hoping for a good result.

Hope this post finds you improved and your reply is most welcome.

Regards
Scambuster

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