Some of you guys already know a lot of this, but I suppose it's time to put it out there.
In August 2014, I was looking forward to the upcoming ECFR when I developed a sore throat. When it didn't get better in a few days, I saw my doctor, who prescribed antibiotics, and it got better. After I returned from Tellico, however, the soreness returned, and I went back to the doctor and was prescribed another round of antibiotics, which took care of it. At least it did for a couple of weeks or so, and the symptoms returned again. My fiancee Susan offered me a Z-pak that she happened to have on hand. Thinking that it was just a stubborn infection, I took the meds again, with the same result.
By this time it was getting to mid-November, and I decided to see a different doctor at another clinic. This doctor ran an instant strep test, which was negative. Finally, after examining my throat three times, she finally said "I think you need to see an ENT". After prodding her for a few minutes as to why she thought this was necessary, she looked me straight in the eye and said "I think you might have throat cancer". However, I was unable to get an ENT referral in a timely way in that hospital network, and knowing I could get one at the original clinic, I returned there and insisted on seeing a different MD.
When the new doctor had listened to my story and examined me, he asked to be excused for a moment, and returned with a colleague, who also examined me. They both also agreed that I needed to see an ENT, which I did the next day. That ENT scoped me and said that he only saw a 'small red sport', and I was going to be okay. Upon reporting this back to the referring MD, he was upset, and immediately scheduled me for a CT scan. After the scan, I went to my part-time evening job. I was only there for about 45 minutes when I received a call from the MD himself, who asked me to leave work and go directly to the 6th floor of the hospital, where I was to be directly admitted. I did so, and was seen by one of the attending MDs who told me that I had a 3x5x6 cm growth in my throat, which was in serious danger of obstructing my airway. I found this hard to believe, as I was still working out 3-4 times a week, and had played 3 hours of volleyball pretty much non-stop just the night before. I was kept at the hospital for a couple of days before it was determined that the risk of airway blockage was not as dire as the CT looked. I was told at this time that while they now knew that I had cancer, I definitely did NOT have lymphoma.
Things began to move quickly at this point, and a biopsy was taken of a couple of lymph nodes on the side of my neck. I was diagnosed with HPV16 positive Squamous Cell Carcinoma of the left tonsil (which had been removed 12 years prior). If every cell of a tonsil is not removed, it can grow back, and it's a fairly common occurrence. In my case, however, I had picked up the Human Papilloma Virus, of which there are over 100 strains. Of these, I was unlucky enough to get HPV16, the worst of them all. It caused the malignancy in the regrowth of the tonsil.
HPV positive cancer is highly curable (84%) in non-smokers when caught relatively early, and even though mine had advanced to Stage 4, my doctors are some of the best available, and they seemed very confident that we could beat it. After going through many preparations, including many tests, and placement of a feeding tube, the treatments began in mid-April.
The standard for treating this kind of cancer is 7 weekly treatments of platinum-based chemotherapy (Cisplatin), along with 35 radiation treatments. It was a brutal treatment, and the side effects were very difficult. My rad doc later told me that I had taken more grays than he had ever given a neck cancer patient in his career. I ended up being on a feeding tube, with neither food nor drink for 4 months, as the inside of my throat was burned black. When diagnosed, knowing a bit of what was in store, I had made a restaurant tour, eating all my favorites, and managed to push my weight up to 260 pounds before the treatment began. After having trouble with the feeding tube, my weight ended up dropping from 260 to 188 in just a short few weeks, and I was hospitalized with dehydration and the weight loss. IV fluids were forced, and a new feeding tube was placed into my small intestine (4 times before they got it right) and liquid food was pumped in. The treatments continued, with daily ambulance rides over to the cancer center. After 10 days, I was sent home (mostly because of my constant campaigning for it) with a pump for the feeding tube. This was not the best thing, as even though I had the comforts of home, I did not have anyone with me through the day for many of the little things one takes for granted.
Mid-May through early August was mostly spent on the couch under piles of blankets, because of extreme fatigue, and that despite it being the middle of summer, I was freezing. Being cold and fatigued were serious problems. My weight had climbed back to 220, until the feeding tube was removed, and my appetite suddenly vanished, and weight went back to 200. Around the end of August, it was finally found that the radiation had not killed my thyroid as thought, but had caused my normal testosterone level (>200) to drop to 30. With therapy for the problem, the energy level quickly returned.
By late August, I was finally feeling much better, and looking forward to moving on with my life. My August PET scan only showed inflammation in the area of the original main tumor, and that was simply that the tissue there had not healed completely from the radiation (my rad doc told me I had taken 'more radiation than he had ever given anyone in his career'), and a subsequent scope inspection of the area showed no evidence of disease. My radiation doc and my surgeon told me they felt I was in remission. I was feeling great, good enough that the ECFR was suddenly doable, and I had a great time there, receiving hugs and warm greetings from everyone. I was able to ride a bit over 700 miles in three days.
However, by mid-October, things had changed, and I just sensed that somehow, something wasn't quite right, and I asked that my previously scheduled PET scan for early November be moved up. I had it a week ago Friday, and received the results on Tuesday, and the prognosis from the medical oncologist on Wednesday. Despite the previous PET scan and claim of remission, the cancer has metastasized to my lungs in about 20 spots. It is too diffuse for radiation, and it is inoperable. Only chemotherapy is available. If I choose no treatment, I might live 6 months. If I choose to have him treat it, a year, perhaps a bit more.
There is a clinical trial at the University of Cincinnati for which they think I would be a excellent candidate. My medical oncologist has been in contact with them,, and has me scheduled for a day-long round of chemo, and install a port within the next couple of weeks. These two items will get me qualified for the trial, and perhaps I will be admitted to it. No telling if I will be, or if I am admitted, whether or not I would even receive the new drug, or what time it might buy. In all honesty, even if it does, studies aren't about the participants, they're about the ones who come down the road after.
So, there it is.
Why post this here, and in such detail? HPV is out there in huge numbers (some estimates say that 70-90% of adults carry it), and it's causing an epidemic of head and neck cancer in men of the age group of what I would guess to be the majority of the members here. There's no cure for it, though some people's immune system wipes it out, and some do not. If putting my story out there causes only one guy here to learn more about it and saves him from a similar fate, it was worth my time.
Be informed... protect yourself.
On the bright side, Susan and I have decided to move up our plans to get married.to December 12th. Hell, it's not like it's a long term proposition for her or anything, heh.
We're supposed to have some well above average and clear weather in the region next week. Screw it... I'm going riding for a couple of days.
Randy T
Indy
Randy,
Thank you for posting this...it's such a personal story.
Over the years, I've read your posts here and thought, "Damn...I gotta meet that guy!" I was happy to meet you at this last ECFR and we had some great chats. You opened up a bit about what you've been going through and I honestly can't even imagine what that must be like. When I got back, I was talking with another FJ guy and he asked me If I had met "Not a Lib" at the ECFR...I replied that I had no idea, but I really wanted to...there were so many new faces there...a lot said they weren't active on the forum and in just a few short days, I wasn't completely sure who I'd met. He said, "Well, his name is Randy Thompson...?" Oh, hell yeah! So, I did meet "Not a Lib"!!! ...And I found him to be a most righteous dude. :good2:
I wish you all the best getting through this...and anytime you want to ride, I'm there!
Thank you for sharing Randy
My thoughts and prayers go out to you. I do hope that your marriage is a lot longer than anticipated. Your story sounds very similar to my brother-in-law who fought bowel cancer for 2 1/2 years (18 months longer than they thought he would make). Don't let anyone stop you from doing what you love doing, just because you have cancer doesn't mean you should stop living.
You sound like you have an excellent support group around you. Use it. Ask for help if you need it.
Mark
Wow, Randy. Just wow.
You're one of the first people I met at my first-ever Rally in Boone, and the Indy MotoGP weekend that you hosted stands out as a highlight in my riding life.
Thanks for sharing that. I knew a little about the situation but nothing in detail. I'm not a believer and I don't pray, but you have my whole-hearted support. I firmly believe that, whatever the outcome, you've got good karma stored up by the bucketful.
rossi
That really sucks. Thoughts and prayers for you. I lost my Mom to throat cancer about 12 yrs. ago. She took it in stride an continued on with life to the very end. Hope you are as well as can be and ride on Enjoy the KOOKALOO. Big R
I hate the C word, my father inlaw suffered from lung cancer. I believe we are here for a good time but not along time. Cancer is not racist, it takes us all from little kids to babies to 80 year olds of all walks of life. My heart goes out to you and yours. When I would see your name Not a Lib come up on this site I always wondered why you are not a liberal for I am, I always wanted to have a discussion on the political side of things to get your perspective on world matters. Keep fighting the good fight Randy, you must be a stubborn strong man of character to get through the suffering thus far.
Don
Randy T,
Thanks for posting , Many of us have health issues that we let go for far too long before seeking help..
I have a saying I have been using for over 20 years .." it's not real till it happens to you".
I would say just get married now as time is precious ..
Sending good karma your way. :drinks: :drinks:
Quote from: not a lib on October 31, 2015, 11:39:06 PM
Some of you guys already know a lot of this, but I suppose it's time to put it out there.
In August 2014, I was looking forward to the upcoming ECFR when I developed a sore throat. When it didn't get better in a few days, I saw my doctor, who prescribed antibiotics, and it got better. After I returned from Tellico, however, the soreness returned, and I went back to the doctor and was prescribed another round of antibiotics, which took care of it. At least it did for a couple of weeks or so, and the symptoms returned again. My fiancee Susan offered me a Z-pak that she happened to have on hand. Thinking that it was just a stubborn infection, I took the meds again, with the same result.
By this time it was getting to mid-November, and I decided to see a different doctor at another clinic. This doctor ran an instant strep test, which was negative. Finally, after examining my throat three times, she finally said "I think you need to see an ENT". After prodding her for a few minutes as to why she thought this was necessary, she looked me straight in the eye and said "I think you might have throat cancer". However, I was unable to get an ENT referral in a timely way in that hospital network, and knowing I could get one at the original clinic, I returned there and insisted on seeing a different MD.
When the new doctor had listened to my story and examined me, he asked to be excused for a moment, and returned with a colleague, who also examined me. They both also agreed that I needed to see an ENT, which I did the next day. That ENT scoped me and said that he only saw a 'small red sport', and I was going to be okay. Upon reporting this back to the referring MD, he was upset, and immediately scheduled me for a CT scan. After the scan, I went to my part-time evening job. I was only there for about 45 minutes when I received a call from the MD himself, who asked me to leave work and go directly to the 6th floor of the hospital, where I was to be directly admitted. I did so, and was seen by one of the attending MDs who told me that I had a 3x5x6 cm growth in my throat, which was in serious danger of obstructing my airway. I found this hard to believe, as I was still working out 3-4 times a week, and had played 3 hours of volleyball pretty much non-stop just the night before. I was kept at the hospital for a couple of days before it was determined that the risk of airway blockage was not as dire as the CT looked. I was told at this time that while they now knew that I had cancer, I definitely did NOT have lymphoma.
Things began to move quickly at this point, and a biopsy was taken of a couple of lymph nodes on the side of my neck. I was diagnosed with HPV16 positive Squamous Cell Carcinoma of the left tonsil (which had been removed 12 years prior). If every cell of a tonsil is not removed, it can grow back, and it's a fairly common occurrence. In my case, however, I had picked up the Human Papilloma Virus, of which there are over 100 strains. Of these, I was unlucky enough to get HPV16, the worst of them all. It caused the malignancy in the regrowth of the tonsil.
HPV positive cancer is highly curable (84%) in non-smokers when caught relatively early, and even though mine had advanced to Stage 4, my doctors are some of the best available, and they seemed very confident that we could beat it. After going through many preparations, including many tests, and placement of a feeding tube, the treatments began in mid-April.
The standard for treating this kind of cancer is 7 weekly treatments of platinum-based chemotherapy (Cisplatin), along with 35 radiation treatments. It was a brutal treatment, and the side effects were very difficult. My rad doc later told me that I had taken more grays than he had ever given a neck cancer patient in his career. I ended up being on a feeding tube, with neither food nor drink for 4 months, as the inside of my throat was burned black. When diagnosed, knowing a bit of what was in store, I had made a restaurant tour, eating all my favorites, and managed to push my weight up to 260 pounds before the treatment began. After having trouble with the feeding tube, my weight ended up dropping from 260 to 188 in just a short few weeks, and I was hospitalized with dehydration and the weight loss. IV fluids were forced, and a new feeding tube was placed into my small intestine (4 times before they got it right) and liquid food was pumped in. The treatments continued, with daily ambulance rides over to the cancer center. After 10 days, I was sent home (mostly because of my constant campaigning for it) with a pump for the feeding tube. This was not the best thing, as even though I had the comforts of home, I did not have anyone with me through the day for many of the little things one takes for granted.
Mid-May through early August was mostly spent on the couch under piles of blankets, because of extreme fatigue, and that despite it being the middle of summer, I was freezing. Being cold and fatigued were serious problems. My weight had climbed back to 220, until the feeding tube was removed, and my appetite suddenly vanished, and weight went back to 200. Around the end of August, it was finally found that the radiation had not killed my thyroid as thought, but had caused my normal testosterone level (>200) to drop to 30. With therapy for the problem, the energy level quickly returned.
By late August, I was finally feeling much better, and looking forward to moving on with my life. My August PET scan only showed inflammation in the area of the original main tumor, and that was simply that the tissue there had not healed completely from the radiation (my rad doc told me I had taken 'more radiation than he had ever given anyone in his career'), and a subsequent scope inspection of the area showed no evidence of disease. My radiation doc and my surgeon told me they felt I was in remission. I was feeling great, good enough that the ECFR was suddenly doable, and I had a great time there, receiving hugs and warm greetings from everyone. I was able to ride a bit over 700 miles in three days.
However, by mid-October, things had changed, and I just sensed that somehow, something wasn't quite right, and I asked that my previously scheduled PET scan for early November be moved up. I had it a week ago Friday, and received the results on Tuesday, and the prognosis from the medical oncologist on Wednesday. Despite the previous PET scan and claim of remission, the cancer has metastasized to my lungs in about 20 spots. It is too diffuse for radiation, and it is inoperable. Only chemotherapy is available. If I choose no treatment, I might live 6 months. If I choose to have him treat it, a year, perhaps a bit more.
There is a clinical trial at the University of Cincinnati for which they think I would be a excellent candidate. My medical oncologist has been in contact with them,, and has me scheduled for a day-long round of chemo, and install a port within the next couple of weeks. These two items will get me qualified for the trial, and perhaps I will be admitted to it. No telling if I will be, or if I am admitted, whether or not I would even receive the new drug, or what time it might buy. In all honesty, even if it does, studies aren't about the participants, they're about the ones who come down the road after.
So, there it is.
Why post this here, and in such detail? HPV is out there in huge numbers (some estimates say that 70-90% of adults carry it), and it's causing an epidemic of head and neck cancer in men of the age group of what I would guess to be the majority of the members here. There's no cure for it, though some people's immune system wipes it out, and some do not. If putting my story out there causes only one guy here to learn more about it and saves him from a similar fate, it was worth my time.
Be informed... protect yourself.
On the bright side, Susan and I have decided to move up our plans to get married.to December 12th. Hell, it's not like it's a long term proposition for her or anything, heh.
We're supposed to have some well above average and clear weather in the region next week. Screw it... I'm going riding for a couple of days.
Randy T
Indy
Hey Randy
Never heard of HPV but it sucks. ...If ya want to come to Ireland for your honeymoon. I have an FJ I haven't sold yet and won't. Go see the country it will be cold but.....best wishes and good luck.
Quote from: not a lib on October 31, 2015, 11:39:06 PM
Some of you guys already know a lot of this, but I suppose it's time to put it out there.
Why post this here, and in such detail? HPV is out there in huge numbers (some estimates say that 70-90% of adults carry it), and it's causing an epidemic of head and neck cancer in men of the age group of what I would guess to be the majority of the members here. Be informed... protect yourself.
On the bright side, Susan and I have decided to move up our plans to get married.to December 12th. Hell, it's not like it's a long term proposition for her or anything, heh.
We're supposed to have some well above average and clear weather in the region next week. Screw it... I'm going riding for a couple of days.
Randy T
Indy
Well mate, you`ve got a lot of friends riding with you from all around the Globe. Take a glance, we`re just there on your left hand shoulder. It`s the closest spot to your heart where we can hang on, see your way and where your coming from.
I had no idea of the prevalence nor repercussions of HPV, so thank you for making this family aware. (Spent some time researching and couldn`t believe my ignorance.)
December 12th is now especially marked in my Calendar. A truly beautiful day. (pics?)
It`s also Frank Sinatra`s birthday, a ridiculous detail I know, but shit a lot of his songs apply to you. :drinks:
Randy,
I have known you for years brother. I'm sorry to hear of your situation and know you will do all you can to make the best of your life. I am wishing you all the best and congrats on your wedding.
Eric M
Randy T.
Thank you for sharing.
Congratulations to you and Susan.
Good luck,
Anson
Randy,
I am so sorry and saddened to read this. I have no words. As you know this hits very close to home for me.
I'm proud to call you a friend...
DavidR.
Here's hoping for many more miles and ridin' smiles to you.
Randy T,
Man, that's tough. Here's hoping for the best, for you.
Riding or no, keep in touch with your friends here.
Red
Dammit Randy.............
This sucks to hear about. I can't even imagine how hard it must be on you, and your family. :negative:
I've never met you, but some of my friends speak very highly of you.
Here's to hoping you pull through, and we all get to see you at the Colorado Rally next June! :drinks:
Thoughts and prayers are coming your way from the desert.
Please stay in touch Randy.
Between all the well wishes and prayers posted here, and all of the many PMs and emails I've received, I'm overwhelmed and humbled at the outpouring of support.
I shouldn't be surprised, I guess.
Having been a member of this board from the start (and Yahoo and netpath before that), and having met many of you in person and made life-long friends, I've known for a long time that this group is a cut above what one can find anywhere else.
Above average riders, and outstanding people... thank you all.
G'day Randy, I did not know about the HPV.
Weddings are the best!
Thoughts are with you mate.
Troy
You're a braver man than I am for being so open about what you're going thru. I had a bit of Melanoma removed from my left leg a couple years ago and it scared the shit out of me, but that absolutely pales in comparison to what you're enduring. I am not a religious man, so I can only say that I wish you well and hope that there is a quick cure in sight for you.
Randy,
This is not the news that I was hoping to hear. Positive thoughts and prayers for you. Hopefully you will be accepted for the trials and that it will be a success.
Fred
Randy,
My heart sinks while reading your words.
You were my first person on the forum to open up your home to me, and to introduce me to the joys of attending my first rally, which was also the last rally at Tellicos KOA.
The memory of our trip together, ( blown tire and all) will stay with me forever as one of many, feel good moments in my life.
You and Susan were wonderful to stay with, and your long standing involvement with the FJ community proves how valued you are to us, and we appreciate all that you have shared with us.
Thank you for the informed reason about your illness, and I can only wish you the best of luck with the treatments, and to stay strong, like I know you will.
I know your wedding will be a beautiful event, and please tell Susan congratulations from me.
I have always been a firm believer in the fact, that a man is only as good as the woman he chooses to be by his side, and I know that Susan is that person that completes you.
I'm so very sorry, but yet so very happy for you at the same time, the emotions run deep in times like this, I hope you understand.
Take care my friend.
Leon
Hey Randy,
It was great as always to see you in Tellico.
Your diagnosis is a kick in the teeth. (Almost literally.) HPV is extremely common, causing pretty much all cervical cancer and over 2/3 of the cancers in the throat, tonsils, etc.
They are making amazing strides in treatment of all kinds of cancers, literally new ones by the week. They are starting to understand gene mutations that cause growth of some tumors, which they can then manipulate to prevent the spread and continued growth of the tumor. (Great news for the sort of tumors that comprise breast and ovarian cancer. I don't know enough about your squamous to know if this treatment applies to yours.) They are beginning to be able to over-ride some of the immune system manipulation done by some cancers, "switching on" an immune system response that some cancers "switch off" in order to help a person's own immune system break down the cancer cells in many lung cancers and in melanoma (such as Jimmy Carter's melanoma.)
I am curious, and hopeful, about how these new understandings will improve your experiences beyond what you have been expecting so far. I'm glad you're going to undergo more treatment, because that gives you more time to find appropriate trials (or for them to find you.)
And congratulations on the wedding.
Please PM if there's anything at all I can do.
Randy,
I am glad you and I had time to talk and work on the bike at this years rally. The diagnosis is a kick in the gut. The good news is, many of us are close enough to lend a hand if you find it necessary to make it thru the next challenges.
Let me know if I can do anything.
You and I had a moment discussing funerals when I relayed the witnessing of an Adventure Riders funeral this rally season when I treked off to deliver the rifle to my father during the Rally. I had said any funeral for me would be very small and you indicated you would attend. So I say, now lets get in a "SLOW" race , think riding slower than the other guy across the parking lot, last guy wins.....to see who attends whose.
We all surely pray the treatments provide comfort and a long life.
Dave
Randy/Susan,
I nearly forgot, Congratulations on the Wedding plans. Randy spoke volumes with me about you Susan during the last two rally's. The most recent, how incredible you have been in supporting him thru this.
We all pray you both make it thru this most recent event, Wed and have many years of bliss.
Dave S.
Randy, I have been slow to chime in, but not for lack of caring, my friend. This is a tough row to hoe, no doubt. It just makes me ad that there is so much money for superfluous BS in this world, but still not enough to finally beat cancer. It has already taken too many of my friends & relatives.
I wish you all the best, my thoughts & prayers are with you & Susan. Have a wonderful wedding, & please put up an announcement for a registry. I had some friends that were able to fund a nice trip with their registry, with friends & family all funding small portions. I imagine all of us here could do a small part and help you get about.
Again, all the best!
Ed Thiele
Well, as it turns out, the wedding is not going to happen. After receiving some wise counsel from a good friend, I did some checking into a few things, and found that it would, given our situation, be financially devastating, especially for Susan at some point.
In the meantime,due to Obamacare regulations, I would lose my healthcare plan AND due to SSA regulations, any disability payments that might be forthcoming. We have decided to just continue to love one another, and leave things be.
Government should stay the hell out of people's personal lives.
Marriage isn't a piece of paper, it is the commitment that you make to the relationship. In this case it is best not to get the government involved. My thoughts and prayers go out to you and Susan daily.
Anson
Quote from: not a lib on November 07, 2015, 09:32:27 PMWell, as it turns out, the wedding is not going to happen.
Government should stay the hell out of people's personal lives.
Randy,
If it would be a comfort to you and yours, I see no reason that you should not have as much of a ceremony and wedding event as you may want now. Just leave out all of the "accredited" officials (and formal paperwork BS). Employ friends and family in their places, use a "comfortable" venue of your choice, and enjoy the day. You can do the "official" version anytime later, if it ever becomes beneficial to do so. It's nobody's business if you wish to have a "rehearsal" ceremony now for family and friends, but not with the officials.
Do what you can to enjoy life now. It's truly a mistake for
anybody to do otherwise with their life.
Cheers,
Red
So, here I sit in the chemo chair once again... treatment began this am in Indianapolis (carboplatin, FU/5, Erbitux).
We'll continue this until the disease regresses, progresses, or the treatment side effects become intolerable. If it's anything but regression, I'm told that I will indeed be admitted to the University of Cincinnati trial.
Not entirely sure what to pray for here. :wacko1:
Lost my uncle seven years ago to a very aggressive cancer. He went through numerous chemo treatments until he felt the battle was over and refused another. Fought it for 16 years and lived 14 years longer than any other patient with the same cancer. Keep fighting. My prayers are with you. Dave
Randy,
Keep your chin up....I had lymphoma 23 years ago...the chemo just about did me in but I am still here causing trouble.
All the best,
Jeff
Woe......Ran.....that's heavy man !! I know you have a solid faith in the Lord and I know He is, was and always will be by your side, no matter what happens. I pray that your walking and talking with Him will give you peace, strength, hope and absolute assurance. I love you brother and I will keep you in my prayers and continue to petition for His perfect plan for you. Looking forward to getting together......keep shining......keep smiling.....and for God's sake.... keep riding !!! :drinks:
Kev
Quote from: not a lib on November 10, 2015, 10:41:12 AM
So, here I sit in the chemo chair once again... treatment began this am in Indianapolis (carboplatin, FU/5, Erbitux).
We'll continue this until the disease regresses, progresses, or the treatment side effects become intolerable. If it's anything but regression, I'm told that I will indeed be admitted to the University of Cincinnati trial.
Not entirely sure what to pray for here. :wacko1:
So, when is a failure
not a failure?
Apparently, when you're subject to clinical trial admission protocol... :dash2:
Shortly after I wrote the above post, I suffered what I was told was a near fatal reaction to (they think the carboplatin, but perhaps the Erbitux) one of the drugs, and was hauled out of there completely unresponsive and with no detectable pulse. Spent the rest of the day in the Emergency Department next door.
By the next day, I was feeling great again, and have since.
We came away from yesterday's appointment with a new plan: The 'failure' last week isn't regarded as such by the trial administrator, since I didn't receive at least a full dose of the three drugs. So, we have to try something else before I can get in.
I was given the choice of 5-6 drug options, all of which have different side effects, but fight the disease pretty much equally... a true 'pick your poison' moment. I chose Gemzar (Gemcitabine Hcl). We'll start a nine week regimen starting later this week, then get a CT to look for progression. If none, we'll continue. If so, the trial admin says I can join then.
It's cool, windy, and rainy in Indy today, but the forecast for the next two days calls for mid-50s and partial to full sun.
I'm going riding. :yes:
A ride on the fj is always a good idea. :good2:
Sounds like another med cocktail is next , Hang tough Randy.
Time to post an update to this thread, so here goes...
After three rounds (nine weeks) of Gemzar, the post-treatment scan showed that my previously discovered '20 or so' lung tumors had increased to 'many more'. I was now qualified for the Keytruda trial at the University of Cincinnati, and an appointment was set-up.
Upon my arrival at UC Barrett Cancer Center things seemed good at first, but quickly descended into chaos. I have never witnessed such a disorganized mess in my life. After debating with their staff on multiple fronts (whether insurance would cover any of the treatment there - due to our 'healthcare reform', it wouldn't, and whether the trial actually existed - it did), I was finally seen by the doctor administering the trial, who determined that I was an ideal candidate for the Keytruda trial. All that he needed was to obtain copies of my latest scans.
I returned to Indianapolis, confident that I would soon be receiving more treatment... I could not have been more wrong.
After numerous calls between myself, my oncologist, and UC, it became obvious that something was wrong. Days stretched into weeks, and I could not get information from anyone as to what was the bottleneck. Finally, being very persistent with someone at UC, I was given information that I would not be accepted into the trial, and along with that little nugget, three conflicting stories as to why that was the case. This, of course, turned up my level of persistence to the point where I was able to figure that someone made a mistake. I'm not able to ascertain whether it was by UC or St. Vincent personnel, but was told that, bottom line, I was in no way, shape, or form, going to be in that trial.
The following week, my oncologist received a call from the UC doctor, who apologized for the misunderstanding, and suggested that he petition one of the drug companies to help us out with an off-label treatment with one of the new biologic drugs (Keytruda or Opdivo). This assistance was needed because insurance companies will not pay for drugs that are prescribed for off-label (other than FDA approved) treatment, and they are insanely expensive (in my case $9500/dose). Surprisingly, Bristol Myers Squibb immediately reached out to me, and offered a year's supply (and more, if needed).
The Opdivo treatment began eight weeks ago, and I felt improvement from the first day. Breathing was easier, and pain left, and hasn't returned. I received a new follow-up scan on Wednesday, with the results today.
Unfortunately, the scan shows that it had no positive effect whatsoever on disease progression. This is a 4th line treatment failure. The net effectiveness of the chemo drugs yet available to me is 10%.
Pending negotiations with insurance, I am being referred to the research department at the IU Simon Cancer Center. They plan to do a needle biopsy, in order to get a complete genetic map of the disease. The information therein might be completely useless, or it may allow them to cast a silver bullet. Time will tell.
My oncologist said this morning that if he were just handed my chart, he would've come to the exam room, prepared to refer me to hospice. But as always, he is shocked to see that I still have a healthy appearance, and am doing, within reason, whatever I want to do (even sporting a healing gash to me hand from a yard work accident last weekend). Recovery from the biopsy is minimal, and he advised me to continue doing what I want.
If you're bored enough to have read this far, here's the good part: I have reservations for the ECSR, WCR, and Central FJ rallies. Susan is coming along for all or part of them (plans are still a bit in flux, but starting to gel).
Let's go riding!
Looking forward to seeing you both in Willits, would you like to light off the Thermite for the campfire?
Quote from: FJmonkey on April 29, 2016, 05:00:47 PM
Looking forward to seeing you both in Willits, would you like to light off the Thermite for the campfire?
Doesn't one have to be fast enough to get away from that stuff, once lit? :scratch_one-s_head:
Quote from: not a lib on April 29, 2016, 05:18:43 PM
Quote from: FJmonkey on April 29, 2016, 05:00:47 PM
Looking forward to seeing you both in Willits, would you like to light off the Thermite for the campfire?
Doesn't one have to be fast enough to get away from that stuff, once lit? :scratch_one-s_head:
I use a strip of MAG ribbon as a fuse, the longer the strip the more time you have to get a good view of the light show. A 3" strip will give you about 20 seconds. And I found if you pack it a bit tight it burns off slower, giving a longer light show.
Great Idea Marcus!
Randy gets the horrors......I mean honors.....stupid spell check......honest..... :sarcastic:
It's great to hear form you. We are so happy to hear that you and Susan are going to the spring rallies. Looking forward to meeting both of you. If there is anything we can do to help please let us know.
Kurt
Quote from: not a lib on April 29, 2016, 04:48:16 PM
My oncologist said this morning that if he were just handed my chart, he would've come to the exam room, prepared to refer me to hospice.
But as always, he is shocked to see that I still have a healthy appearance, and am doing, within reason, whatever I want to do (even sporting a healing gash to me hand from a yard work accident last weekend).
Let's go riding!
My thoughts and prayers go out to you. Prayers for skillful physicians.
Thanks for the positive demeanor, keep fighting the fight.
Quote from: FJmonkey on April 29, 2016, 05:00:47 PM
Looking forward to seeing you both in Willits, would you like to light off the Thermite for the campfire?
What a coincidence. I just saw this the other day.
https://www.youtube.com/watch?v=JEoqrjFX1yI (https://www.youtube.com/watch?v=JEoqrjFX1yI)
And if you want to build one...
part 1
https://www.youtube.com/watch?v=9XAnx5x8E-8 (https://www.youtube.com/watch?v=9XAnx5x8E-8)
part 2
https://www.youtube.com/watch?v=uDm3is3PDc0 (https://www.youtube.com/watch?v=uDm3is3PDc0)
Just need to figure out how to carry it on the FJ.... good luck!
Randy, sending all the good karma I've got your way. Keep up the fight.
Wish I could make the ECSR, but it appears the powers have conspired against me.
I'll catch you there next year.
Quote from: FJ Flyer on May 03, 2016, 08:12:06 AM
Randy, sending all the good karma I've got your way. Keep up the fight.
Wish I could make the ECSR, but it appears the powers have conspired against me.
I'll catch you there next year.
Deal. :yes:
Hi randy,
I read your post a couple of days ago and was thinking of you today.
and would like to say thank you for sharing. My father died from C when I was 17.
Back in 1974. They still had used radiation and chemo. Sounds funny that same sort of treatment 40 years later. My brother in law just passed with head and neck cancer, came back, he was 67.My wife is a cancer pharmacist. But my thoughts are if we live long enough, almost all of us will get the darn stuff.
Good thoughts and prayers your way,
Dave
You are always in my thoughts, Randy.
I will always remember our trip to my first FJ rally.
Your kind and open friendship you and Susan showed me how good-hearted you are.
I don't mind telling you, but I hope that the others wound mind seeing to grown men hug at the Central rally.
That is just the best way I can tell you how much you mean to me.
Take care, and stay strong, my friend.
Leon
Quote from: Picopower on May 11, 2016, 07:41:55 AM
Hi randy,
I read your post a couple of days ago and was thinking of you today.
and would like to say thank you for sharing. My father died from C when I was 17.
Back in 1974. They still had used radiation and chemo. Sounds funny that same sort of treatment 40 years later. My brother in law just passed with head and neck cancer, came back, he was 67.My wife is a cancer pharmacist. But my thoughts are if we live long enough, almost all of us will get the darn stuff.
Good thoughts and prayers your way,
Dave
Dave, first, I'm sorry for the losses you've suffered with this thing. Honestly, with head and neck cancer, dealing with the treatments is much worse than the disease itself. I can vouch that they are brutal, and some of the side effects are lifelong.
FWIW, Susan and I met with my new oncologist at IU health yesterday. We hit it off with her right away, as she has a great sense of humor, and she'd been told that I was messing with her staff in a way that she, in her position, cannot do. Discussing treatment options, we're on the same page, as well. By all accounts, she's an excellent onc.
I'll be going back on platinum based chemotherapy right after we return from the ECSR, so by the first couple of weeks of June, I should be well into losing my hair again. If it's like last time, it won't be all that bad... at least the WX is warm.
Quote from: 1tinindian on May 11, 2016, 11:23:30 AM
You are always in my thoughts, Randy.
I will always remember our trip to my first FJ rally.
Your kind and open friendship you and Susan showed me how good-hearted you are.
I don't mind telling you, but I hope that the others wound mind seeing to grown men hug at the Central rally.
That is just the best way I can tell you how much you mean to me.
Take care, and stay strong, my friend.
Leon
Leon, if I
don't get a hug from you, I'm going to be upset... :yes:
It has been sometime since any posts on this topic. Randy has done a bunch of stuff this year and was able to make all four US rallies in one season: http://www.fjowners.com/index.php?topic=16119.msg162395#msg162395 (http://www.fjowners.com/index.php?topic=16119.msg162395#msg162395)
I was just advised Randy in the ICU at IU Health University Hospital in Indy. I was told he was posting over on FB, but since I do not have account I am not sure what is going on.
Please keep Randy and Susan in your thoughts and prayers.
Randy - RPM
Randy indicated he was doing better but posted "So Susan went to dinner and is walking back to the hospital to visit me, and gets hit by a car... Says she's gonna be okay, but I'm like " damn, what else?" He is having a rough go of it.
George
Randy,
Hang in there, Buddy!
Since your initial post on this subject, I've lost a good friend in the MG world; and my Mom three weeks ago.
Words simply don't convey the full meaning sometimes.
I care.
Tough subject.
Steve
Quote from: racerrad8 on October 19, 2016, 07:30:18 PM
It has been sometime since any posts on this topic. Randy has done a bunch of stuff this year and was able to make all four US rallies in one season: http://www.fjowners.com/index.php?topic=16119.msg162395#msg162395 (http://www.fjowners.com/index.php?topic=16119.msg162395#msg162395)
I was just advised Randy in the ICU at IU Health University Hospital in Indy. I was told he was posting over on FB, but since I do not have account I am not sure what is going on.
Please keep Randy and Susan in your thoughts and prayers.
Randy - RPM
Randy,
Great pleasure to meet you at WCR. Great to see you got a big part of your bucket list completed! Best of luck.
Jeff
George, thanks for the update from last night.
Have you seen any other updates?
Randy - RPM