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Rollercoaster Ride

Jeff2159's picture
Jeff2159
Posts: 96
Joined: Feb 2012

This cancer stuff is taking me for a ride. I have battled tongue cancer for almost 20 yrs (10 surguries mostly outpatient except 2) and never smoked or chewed. 3 surguries from Dec 2011 to Jan 2012 led me to explore radiation and had PET scan which showed my mouth clean but my left kidney was cancerous. Adios to left kidney (and thought stage 1) March 7 but stage 3, 1 lymphnode cancerous, with 55% element of sarcomitoid so the grade was 4. CT Scan April 12 as I was going on the everest trial but surprise, I have spots on my lungs. Week ago I had an EBUS ultrasound plus a resection of the lung. Initial frozen report showed a hint of renal cell (so I filled out paperwork for a clinical trail of sutent and dalteparine) but the final Path came yesterday and surprise, the lung nodules show the cancer as being squamous cell. Doc is going have the pathology done again to make sure as treatment for both cancers is different. Thought at first if the cancer is squamous cell, I may have a better chance but after talking with my oncologist late last night that may not be the case. At this point I can only laugh because what more can go wrong. Doc last night is at a loss for words as this cancer is not textbook. Regardless, I will just plug along and take my son to Wrigley park this weekend to see the Dodgers play the cubs. These Docs are smart but I guess my cancer is getting the best of them right now. I did a brain scan last week and that was clean and my mouth and throat are clean too. On to another day

foxhd's picture
foxhd
Posts: 1953
Joined: Oct 2011

...Jeff read my last post in the mdx-part3. Not as involved as you, but it sure seems it is out to get us a piece at a time.

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

I give you alot of respect for the way you handled everything that has been dumped on you,but not excacly sure if going to a Cubs game is a good way to make yourself feel any better,who knows maybe you got the tix for free.Dont know how to say this but Jeff i think me and you need to hang around for a while longer if we are going to see the Cubs win a world series,good luck Jeff and i hope things start to go your way i think you deserve it.

Jeff2159's picture
Jeff2159
Posts: 96
Joined: Feb 2012

I almost clicked on the place where it says "report as offensive"--LOL. I'm a Dodger fan thats why I'm here to see the games. Can't imagine being a cubs fan,Dodgers are bad enough having a world series drought since 1988. My doctors had a pow wow last night and in their words, "are perplexed on my case". They are going to do additional stains/tests so it will be another 5-7 days before they hopefully come up with a plan

Jeff2159's picture
Jeff2159
Posts: 96
Joined: Feb 2012

After a few more tests and comparing my lung resection, lymphnode and pathology of my tongue cancer it was determined the cancer in the lung is from the kidney. This made the most sense but there was squamous cells present on one of the tests. Started Sutent today and will do so for 4 weeks, 1 week off and then dalteparin for 1 week. New 6 week cycle starts after that with dalteparin everyday for 6 weeks and the sutent only for the first 4 weeks. After 12 weeks, CT scans to see if any progress is made-- good or bad and reevaluate dosage depending upon what the scans say

Jeff

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

That sounds like a well thought out plan Jeff and I hope it goes well for you. Your situation looks like a classic example of how complex this all is and how carefully it has to be analysed and even then there's a big element of guesswork. So here's hoping both the meds and the educated guesswork go in your favour.

Jeff2159's picture
Jeff2159
Posts: 96
Joined: Feb 2012

I know we all hit speed bumps along our journey of fighting cancer but mine seem to be a bit odd. Started the sutent just over 3 weeks ago and didn't really have any bad side effects. Bottom of feet a bit tender, rear end tender and some mouth sores but no nausea or loss of appetite. A week prior to the medicine, I developed a couple of holes at the the floor of my mouth near where I had had all my prior 8 mouth surguries. Two weeks ago the holes connected and made a one inch gash about 1/4 wide. Think cankersore pain times 100. Had biopsys taken last wednesday of the area and on friday I decided to stop the sutent because I cannot stand the pain even with vicodin, percacete and a morphine liquid. Sutent stops blood clotting and to have surgery my body has to be clean of it. Well I found out today I have cancer again in my mouth after having a clean bill this past january. Doc says I have field cancerization, no primary just alot of sites that can turn to cancer. So now I have to wait 1 month for the sutent to get out of my sysstem to have the mouth surgery and most likely will get a skin graff too. With the pain now, there is lack of sleep and also little eating. Scrambled eggs are a chore to get down.Going to a pain Doctor tomorrow or the next day to hopefully get some relief-- maybe a nerve block, anything to relieve the pain. One thing the sutent did though I think was get rid of my involuntary cough as I had lymphnodes that were enlarged in the lung area that were irritating a nerve. So it looks like the kidney-lung cancer will be put on hold until I can get my mouth cancer in order

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Jeff, what can one say other than that we're all pulling for you. You certainly seem to have drawn a cruel hand.

Questions: who arbitrates on the order of play? Do you have different docs in respect of the RCC/lung mets on the one hand and the mouth cancer on the other? Presumably so. In which case, what are the criteria for deciding on the priorities for treatment? Is there any sort of connection between the different forms of cancer you have (i.e. the kidney and the mouth cancers?

Jeff2159's picture
Jeff2159
Posts: 96
Joined: Feb 2012

Thanks Tex

Woke up bright and early, no need for an alarm clock as the pain meds wearing off does the trick. No the Kidney and mouth cancer is different though the thought of the lung mets could have been from the mouth because it had a squamous look in only ONE of the many tests. Thats what delayed me taking the sutent for 10 days after the mets were found in the lungs. At this time I go to different docs and facilities but I had this same question talked over last night with my wife as it may be time to have all my procedures brought under the umbrella of the City of Hope. Will eliminate duplicate tests and I believe the RCC/lungs mets is the more dangerous of the two cancers though to eliminate the pain in my mouth is more pressing right now.I have been with my oral surgeon for 17 yrs and I have never been let down (but he does have the worst bedside mannner) so it will be hard to stop receiving his care. Also there is the question of radiation for my mouth where all this started (PET scan found Kidney mass)and if I go that direction, CofH should dictate that procedure. I emailed my oncologist yesterday with my path results and he is setting me up with an oral surgeon (part of his team)in the next few days

Jeff2159's picture
Jeff2159
Posts: 96
Joined: Feb 2012

Been on the head and neck site since I've been in the hospital since wednesday but i get out tomorrow and get the trach tube out of my throat as well as the packings. I do not wish a trach tube on anyone as it is very uncomfortable and messy with all the flem oozzing out. Different doctors and hospitals for each cancer and have decided to keep it that way. The good news is that I'm out of pain other than the discomfort of the two skin grafts on my thigh. Will go back on the sutent in about 1 month after everything has properly healed but will be out of the clinical trial with dalparin--their loss. Will be curious on my next scan how everything looks even with the break in sutent

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

God Jeff - I don't know what to say. You've really had a tough ride. But I'm glad the pain is better and you've mapped out the next few weeks. Hopefully, the sutent by itself will do the trick. I'll keep you in my prayers and wait for good reports; you've already had your quota of bad ones.

Jeff2159's picture
Jeff2159
Posts: 96
Joined: Feb 2012

Been out of hospital one week and the mouth and throat are slowly healing but I was able to eat pulled pork,macaroni salad and pork and beans last night,beats ensure and yogurt-- first real meal in 3 weeks. Path came back and said perineural invasion present which explains why I had so much pain. With the cancer in or around the nerve, my next step will be radiation of my mouth which was going to shelf a couple of trips of mine. Very discouraged until my oncologist kidney/lung said he wants to start me on sutent again as soon as I heal and then do the radiation after 1-2 cycles. This is where the good news comes in as I have plans to play Pebble Beach the first week of Aug (eat your heart out Tex) and then an 11 day cruise first of Sept in the Baltic. My spirits are sky high now even though radiation lurks ahead, at least I get a do a few fun things first.

Jeff

Jeff2159's picture
Jeff2159
Posts: 96
Joined: Feb 2012

Had CT Scan of chest,pelvis and abdomen on Friday the 13th and there was no bad luck. Got the results today and my Doc said, "He has an unprecedented response to the sunitinib therapy; his scans done on 7/13/12 essentially show a complete response in the lungs. We see this in < 1% of patients receiving sunitinib therapy, and possibly fewer in those with extensive sarcamtoid change". After only 19 days, the sutent seems to have worked. I have been off of it since June 9 but the plan is to go on 2 cycles of 50mg 4 weeks on and 2 weeks off and during the last 2 weeks have radiation of my mouth. Hopefully this good luck streak will continue but whatever happens this last scan was for sure a grand slam

Jeff

foxhd's picture
foxhd
Posts: 1953
Joined: Oct 2011

Way to go Jeff! This is the way to do it! Plus Pebble Beach!!!!!!!! Damn life is good!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

You're right Jeff. Have a good one. I think I envy you the Baltic Cruise even more.

I wrote a mid-length reply and lost it when I clicked "Preview comment". That prompts me to reflect on a tip I gave months ago about this hazard. What I said then appears to be applicable only to a Mac/Safari. I'm being subjected, at present, to having to work on a PC with Windows 7 and it conspicuously doesn't apply, so it's back to taking copies for safety, in the expectation that I'll lose it all.

The news on Sutent in general seems to get better and better - for those it suits it can get excellent results. Before long, Jeff, you'll be another leading prospect, jostling to join Fox on the podium (you can tell the Olympics are imminent!).

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Knew you were due for a change of luck and just in time to carry out some first class dream vacations(Pebble Beach, Baltic).

I'm so glad you received good news. I can tell you now I cringed when you spoke of mouth ulcers. While I'm sure it wasn't the kind of pain you had to endure, I've suffered with mouth ulcers on and off my entire life. And God they are painful. They would get so deep my doctor would use acid to burn them which would somehow promote healing. Not good memories for me and ones that I hope are behind you.

Jeff2159's picture
Jeff2159
Posts: 96
Joined: Feb 2012

A year ago at this time i was in the middle of 35 treatments of rads and 3 treatments of chemo for my tongue cancer. It was very tough physically and I had a g-tube through aug 2013. Swallowing has been an issue an I need my food pureed and liquid thickened. Can do ensure and bought a vitamix to have real food. the lung nodules that I had left from June 2012 started to enlarge just a bit so I was put on avastin as I cannot swallow pills, thus no sutent even though it worked so well for me. After 3months I was to have a followup scan jan 6 which I did. Now to back 2 weeks, I had a cough and low grade fever at Christmas. The night of the 30th the cough was real bad but was ok the next day as i played golf. New Years eve i could hardly breath as my side and back were in extreme pain. My primary Dr came over on the first (neighbor) and gave me a 5 day antibiotic as i had some phlem. green stuff improved but I could not shake my low grade fever of 99-100. Day 6 was Sunday so I waited til monday as I had the scan set up. Did scan and would you believe the fever was gone. Later in day the fever came back and woke up tues and coughed up some blood, enough that it concerned me. Finished a few errands and checked myself in. After blood work and xray, it showed I blew a hole in my lung from coughing. Thought is the avastin is working that it killed the small nodule and a weakened area developed and thus the hole in my lung from coughing hard. Will get out Monday and hopefully the full lowdown but it sounds like positive news even for the discomfort

 

Jeff

Jojo61's picture
Jojo61
Posts: 415
Joined: Oct 2013

Hi Jeff,

You are kicking cancer's butt! Way to go! Hang tough!!

 

Jojo

Jeff2159's picture
Jeff2159
Posts: 96
Joined: Feb 2012

feeling better everyday and getting stronger but its at a much slower pace than I like. Not much I can do except take it easy. Got the results back from the lung nodule that assisted in development of the hole in my lung. For the past 20 months or so they have been treating me for mets to lung from the kidney. Well this nodule shows squamous cell cancer which is from my tongue cancer. Originally (April 2012)the doctors were baffled for 3 weeks to determine what I had as the biopsy showed signs of squamous cell as well as renal cell. Whats more strange is that I responded so well to sutent and avastin. See Docs Feb 4 and it looks like I will next go on to Erbitux but will get the full low down then. Just another bump in the road 

Jeff2159's picture
Jeff2159
Posts: 96
Joined: Feb 2012

So started on Erbitux today for the current lung nodules that I have and yes its mets from my tongue cancer. The mets to lungs I had in April 2012 and went away for the most part in June 2012 due to sutent were from my kidney. Even though I had sarcomatoid element to my RCC, Iam stable and have no issues or problems at this time due to the kidney. My mouth and neck are clean so the concentation is the lungs. Recovering slow from the lung surgery last month but all is good and hope to be back swinging the golf club this week. My kidney oncologist has said he no longer needs to see me at this time but he will be kept informed of my future scans.

 

Jeff

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