The Henna Treatment Log

Started the "Henna Treatment" for Hand-Foot Syndrome

December 13, 2008 2:00 PM- My feet are starting to burn at the base of both big toes, on the outside of each foot, and on the heel of the left foot.

I made the Henna Treatment for Hand-Foot Syndrome today using the following formula from a blog ( http://xelodasideeffects.blogspot.com/ )  many people have pointed to:



1/2 Cup Boiling Water

1 teaspoon lemon juice

approximately 1/4 Cup Indian Henna powder



I mixed the above ingredients in a small glass bowl with a plastic spool.  The glop is an unpleasant greenish-brown goo.  It reminds me most of what you get from the back end of a cow who's been turned out to pasture after wintering in a feed lot.  (I'm betraying my rural roots here.)  The scent is not unpleasant - kind of an herbal aroma that isn't too bad.



I allowed it to cool to room temperature then applied a light coat to the areas of my feet that were beginning to burn.  It's soothing as it goes on.  It dries in about 15 minutes.  I put on a pair of old socks and will now go about my business.  I put a plastic lid on the bowl and have stored it in the ice box.


11:30 PM - Feet are holding up pretty well.  A little discomfort, but no burning.  I've applied Bag Balm to my feet and hands where I usually have the H-F Syndrome patches.  (Putting Bag Balm on the usual patches before they burn and peel seems to help prevent it for a bit.  It helps prevent peeling even after the burning starts.)  Put on some fresh old socks and am going to bed.

December 14. 2008 8:00 AM- Used the Goo again

General Observation:     The places I applied the goo yesterday are now a startling shade of reddish-brown.  It doesn't wash off in the shower.

                                        It helped for quite awhile yesterday.  My feet were burning again when I woke up, so I've put on some more of the goo after I took a shower.  It really feels good right out of the refrigerator!

3:30 PM - Put on more goo.  My feet are OK, but we're heading to church for the boys' Christmas Program, then over to Wesleyan to sing in the Civic Choir Christmas Concert.

10:30 PM- Feet hurt!  I had to stand for almost 2 hours for the concert and the dress shoes didn't help.  No peeling, some burning, but mostly stabbing pains at the base of my toes on both feet and on the heel of the left foot.  The sides of the feet where I usually get the H-F patches are OK  I've taken 2 ibuprofen and applied Bag Balm as usual.

December 15, 2008 - 6:00 AM - Feet aren't too bad this morning.  Applied The Goo to my feet after a shower, applied a light layer of Bag Balm over that after it dried, then socks.  Hands are OK.

10:35 PM - Feet and hands are OK.  Applied Bag Balm to feet and hands as usual, put on old socks.

December 16, 2008 - 6:00 AM - Feet hurt some this morning and burn a little.  Applied The Goo to my feet after a shower, applied a light layer of Bag Balm over that after it dried, then socks.  Hands are OK.

General Observations:  The Goo is really soothing when it's put on.  It seems to help a lot with the burning.  It cools down the burning and seems to hold off it's recurrence for awhile.  I wonder if that's The Goo itself, or is it just applying something cold from the refrigerator?  Would applying something like vanilla pudding or mayonnaise do the same thing without the stains?

                                        The Goo seems to help some with the pain, too, I think.  The real test of that will be later on when things usually hurt more. 

                                        I've discovered that the socks I wear after putting on The Goo need to be washed separately.  I now have a load of pink former-whites.  I may start wearing well-cushioned black athletic socks rather than the white ones after applying The Goo.

More on the Henna Treatment

The glop looks like something that comes out of a cow after she's been turn onto the pasture in the spring.  (I'm betraying my rural roots here, but that is what it looks like.)  Fortunately, it doesn't smell that way!  ;-)

The glop is very soothing when it's put on and I think it's helping with the burning.  Maybe it'll head off the stabbing pains - man, I hope so!

Trying the Henna Treatment for Hand-Foot Syndrome

Well, the feet are starting to burn. I've tried all the over-the-counter suggestions and everything else I can think of to help with this, so I'm going to try the Henna Treatment.

I made the Henna Treatment for Hand-Foot Syndrome today using the following formula from a blog ( http://xelodasideeffects.blogspot.com/ ) many people have pointed to:

1/2 Cup Boiling Water
1 teaspoon lemon juice
approximately 1/4 Cup Indian Henna powder

I mixed the above ingredients in a small glass bowl with a plastic spool. The glop is made is an unpleasant greenish-brown goo. It reminds me most of what you get from the back end of a cow who's been turned out to pasture after wintering in a feed lot. (I'm betraying my rural roots here.) The scent is not unpleasant - kind of an herbal aroma that isn't too bad.

I allowed it to cool to room temperature then applied a light coat to the areas of my feet that were beginning to burn. It's soothing as it goes on. It dries in about 15 minutes. I put on a pair of old socks and will now go about my business. I put a plastic lid on the bowl and have stored it in the ice box.

11:30 PM - Feet are holding up pretty well. A little discomfort, but no burning. I've applied Bag Balm to my feet and hands where I usually have the H-F Syndrome patches. (Putting Bag Balm on the usual patches before they burn and peel seems to help prevent it for a bit. It helps prevent peeling even after the burning starts.) Put on some fresh old socks and am going to bed.

An Early Christmas Present!

Hi, All - I thought you might enjoy this picture. It's a Saturday Evening Post cover made by John Falter showing our hometown, Falls City, Nebraska, at Christmas time, 1946. Most of the buildings where about the same as when I was a kid in the 60s and 70s.

I flew down to St. Louis with my good-luck charm (my Aunt Sarol) yesterday and got the results of my latest CT scan. You may remember that the largest tumor in my lung had grown after my September CT scan. Well, this time the scans showed that the largest tumor in my lung has shrunk! (Yea!) The other tumors are stable and there are no new tumors. Needless to say, I'm very relieved and grateful.

In other news, I no longer have to go down there every six weeks. They've decided I'm trust-worthy enough and that my local oncologist is competent enough that they'll give me a two-cycle supply of the drug and I only have to go down every 12 weeks. That will really be nice. It's not a bad flight from Omaha to St. Louis, but I'll be glad to save the money and the time. I'll remain on the same 4-weeks on, 2-weeks off the Sutent cycle and stay on the same dose.

I guess that's actually two early Christmas presents!

My St. Louis oncologist said it's unlikely that the study will ever let my Lincoln oncologist monitor me for the study completely, but he said he'd keep pushing them on it. I keep hoping they'll expand it to an Omaha location (they're still recruiting in St. Louis and recently expanded the study to Washington, DC), but even if they don't, I'm very grateful that I'm in the study.

The side effects were about the same this cycle. There's still research going on to help the worst of them (the Hand-Foot Syndrome and fatigue), but nothing has come of it yet. I actually had more pain from the tumor this time, but nothing too bad. (Sara says it's the tumor screaming from the drug working on it - I like that imagery.)

We got to have lunch with Sara's Aunt Rosemary, which was nice. She was kind enough to run us out to the airport after lunch, which was really nice as the airport is no where near her part of town.

I'll have C/T scans in late February and go down to St. Louis for the results and to pick up a new supply of the drug on March 4.

Thanks again for all your prayers and support. Have a Merry Christmas, everyone!

John

Trying Something Else for Hand-Foot Syndrome

Hi, All - I've been using a MG217 coal tar lotion on the hand-foot syndrome patches on my feet since 11/08/2008. It's made to treat psoriasis, but what is hand-foot syndrome but a deterioration of the skin tissue like psoriasis? I cleared it with my oncologist today. I think it's helping some with the pain. I'm using it in conjunction with Bag Balm, which has helped the peeling immensely.

Humor from "The Onion": Loved Ones Recall Local Man's Cowardly Battle With Cancer

I think this one is a hilarious!  I may copy it for my obituary (which I won't need for another 40 or 50 years, of course.)

Humor from "The Onion": Loved Ones Recall Local Man's Cowardly Battle With Cancer

October Update

Hi, All;

    I went down to St. Louis for my 6-weekly visit on Wednesday.  There were no scans this time, 

so I'll have to wait until my next visit in December to see if there is any shrinkage or growth 

in the tumors.

     I did get some good news.  I've been going down to St. Louis every six weeks, but after my 

next appointment I'll only have to go down every 12 weeks.  I'll still have a 4 weeks on/ 2 weeks 

off schedule for the Sutent, but they'll give me a 2-cycle supply so I won't have to go down there 

so often.  They're still working on getting my oncologist in Lincoln or someone at the Med Center 

in Omaha approved for the study.  That would be great, but this is sure a big help! 

     The side effects weren't nearly as bad this cycle as the one before, forwhich I'm grateful.  There  

are still some new drugs in the approval pipeline that might help with those, but nothing is out yet.

     Sara and the boys came with me this time and we had a mini-vacation.  We went to the Science Center 

and did some shopping and had some fun in the pool.  We visited my sister Marci in Columbia, MO, and 

got to see her new house.  We also got have dinner with Sara's aunt Rosemary and her cousin Pam.  

They took us to a place called "Sage" across the street from the main Anheuser-Busch brewing plant. The 

food and service were excellent.  

And that's about it.  There will be more to report after my next visit to St. Louis on December 10.

Thanks for your continuing prayers and support.  Hope you all have a great Halloween!

John

My Family

Create your own family sticker graphic at pYzam.com

MY TURN: I Had A ‘Legitimate Cancer’ from Newsweek.com

Sometimes—if you listen to your mother and the people you grew up with—you can go home again.

By Steve Tuttle | NEWSWEEK

Published Oct 18, 2008

From the magazine issue dated Oct 27, 2008

On Jan. 12, 2007, I found what would turn out to be a malignant cancer in my left testicle. I went through surgery, radiation, missed three months of work, gained 20 pounds—and became an instant fan of Lance Armstrong. I survived, but I went through hell, emotionally and physically. When it was clear I was OK, my mom decided that maybe I hadn't been through enough yet, so she signed me up for something called the Relay For Life, a cancer fundraising walk in my Appalachian hometown of Millboro, Va. In my post-cancer euphoria, I agreed, and one warm spring weekend I drove from Washington, D.C., with my two kids, Grace and Joseph.

When I found my mom on the lawn of the host school, she handed me a packet that included a bright purple T-shirt. "You need to wear this so they'll know you're a survivor," she said. I changed the subject. We made small talk for a while, and I went to the concession stand looking for comfort in the form of something southern fried. My mom started to get restless; the march time was approaching, and she could see I had cold feet. Finally, I broke it to her: "Mom, I've decided I'll just watch. These are people who still have life-threatening illnesses, and I don't deserve to walk with them." Truth is, I was just embarrassed.

This didn't go over well. My mom is 5 foot 3, but somehow she manages to tower over her husband and two sons, and we're all taller than 6 foot. She pointed her finger at me and said: "Now you listen to me. You had a legitimate cancer! You get that shirt on this instant and get out there and march!" "Yes, ma'am," I said.

I prayed that the shirt wouldn't fit, but it did, and it turns out that at a cancer walk, the stars are the people in the purple, the survivor color. I was like Frosty the Snowman putting on his magic hat. I had VIP status. People looked at me differently, and it made me extremely uncomfortable. "Look! There's one!" they all seemed to say. "Isn't that Bill and Joyce's boy?"

All too soon, the megaphone person announced, "All survivors need to gather inside the school!" So I went in, milling around with my purple-shirted brethren in what looked like a room usually filled with happy country kids eating Tater Tots and drinking chocolate milk. I wanted to be transported back to that age, back to the good ol' days when tall boys like me were tall enough to jump up and write our names on the old cafeteria's asbestos ceiling. (And I wonder how I got cancer?)

But it was 2007, not 1972, and I felt unworthy, and young, even though I was in my mid-40s. Most of the survivors were much older than I was, and a lot of them knew me when I was a kid and a reporter on the local newspaper. The men huddled on one side of the room, the women on the other. I found myself in a tight circle of guys, and, naturally, we compared cancers, like old soldiers comparing battle scars. When my turn came, I said, "testicular," which I always say in a hushed tone. I've watched a lot of men's faces when I lay that word on them, and they all do the same thing: involuntarily squint an eye, quickly inhale, then flash a Thank-God-That's-Not-Me look while simultaneously performing the surreptitious in-pocket jewel check.

The hour was growing near for our march. The idea was that we'd all walk around the temporary track a few times as a group and the town folk would stand along the edge and watch us. When you walked near your family or an old friend, they'd clap and yell until you lapped back around—and then they'd do it again. It was sort of like what a shy person like me might think going to hell would be like, only there you wouldn't have to wear purple t-shirts.

Before it all started, I looked through the school window off into the distance at the beautiful green mountains of my childhood and wondered how fast I could get into the woods and get away. I am a pretty fast runner, even after being weakened by the radiation, and I guessed I could bolt out the back door and make it to a nearby hollow in about five minutes. I could live as a hermit for a few years. Maybe my cowardice wouldn't be remembered when I came back to civilization around 2013.

But it was too late to run. The doors swung open and we marched out into the sunlight. One of the nice women who was running the walk stood over a tiny boom box perched on a chair near the track, her finger poised above the play button. "Oh, no. Oh, no. Oh, no," I thought. "What could it be?"

She pushed the button, a tinny sound came out, and I immediately recognized the song: "At first I was afraid! I was petrified! Kept thinking I could never live without you by my side …" It was "I Will Survive" by Gloria Gaynor. Now, not only am I trapped out in broad daylight, in public, in my purple T-shirt, walking around in circles with people clapping at me, but I'm having a hard time not walking in time to the music. The only line I could identify with was: "Just turn around now … 'cause you're not welcome anymore!"

I wasn't the only one suffering small humiliations on this day. Earlier my dad and brother were talking when an elderly neighbor lady walked up. My father is a southern gentleman of the old school. He is a man of few words, and if he had his druthers, one of those words would not be "testicular." That goes double if he's talking to a woman. "What kind was it?" she asked. My father had to answer. (To save us from this situation in the future, my brother Chris came up with the euphemism "man-area cancer," which I prefer in every way to that other word.)

When darkness fell, and I'd suffered through the promised laps, I sat on the ground with my family beneath the moon. We listened to the roll call of those locals who had died from cancer—names of old friends and familiar mountain surnames—lilting off into the cool night air. Brown paper candle luminaries representing victims formed a circle of light on the ground around the track, and people took turns reading as photos of the fallen were projected on a movie screen.

It was then that I realized something profound about my day. It wasn't humiliating. It wasn't cheesy, or corny, but just right. My mom was right to sign me up. The people that really know me—the ones who watched me grow up, who coached me in little league and went to the Presbyterian church with my family—were here for me and all of the rest of the men and women who'd lived through their own lonely cancer hell. It mattered to them that I was still here. That is no small thing. And that realization made me feel so at home and safe there in that place, sitting on the grass in my purple T-shirt, as the images of my old friends flickered on the screen, their faces made blurry by the tears in my eyes and the fleeting passage of time.

Tuttle is an editor in NEWSWEEK’s Washington bureau and lives in Alexandria, Va.

© 2008

ITALIANS IN CANCER BREAKTHROUGH

ITALIANS IN CANCER BREAKTHROUGH

Short chromosome tips spell risk for thyroid

(ANSA) - Siena, October 20 - A group of researchers in Siena have made a breakthrough in cancer research. The researchers led by Professor Furio Pacini examined the ends of chromosomes of patients with a type of genetically related thyroid cancer. They found an abnormal shortening of the telomeres, the tips which protect a cell's chromosomes from fusing with each other and are involved in cell ageing. ''We showed that this alteration of the telomeres' DNA is only present in the family-related form of thyroid cancer,'' Pacini told the Journal of Clinical Endocrinology and Metabolism. ''In this way we were able to identify those relatives of a patient with short telomeres who are most at risk of developing the same tumour,'' he said. Professor Pacini recently received two prestigious international prizes for his research. In September he was given the European Thyroid Association's annual ETA-Merck prize and earlier this month received the Paul Starr Award from the American Thyroid Association. photo: model of DNA's double helix

Another Advanced Thyroid Cancer Drug

Axitinib Effective in All Subtypes of Advanced Thyroid Cancer

Researchers involved in a multi-center trial have reported that axitinib (AG-013736) has activity for the treatment of advanced thyroid cancer of all histological types. The details of this study were published in the October 10, 2008 issue of the Journal of Clinical Oncology and presented in part at the 2007 meeting of the American Society of Clinical Oncology in June of 2007.¹ 

Thyroid cancer is treated by surgery and 131 Iodine. Patients who fail these therapies respond poorly to radiotherapy and chemotherapy. Thus, new treatments are needed for patients who fail conventional therapy. Axitinib is an oral tyrosine kinase inhibitor that also inhibits vascular epithelial growth factor receptors (VEGFR) 1, 2, and 3. This agent has shown activity in several cancers, including breast, lung and possibly pancreatic cancer.

In the current study, 60 patients with advanced thyroid cancer were treated with axitinib. These patients were deemed refractory to or unsuitable for treatment with 131Iodine. Approximately half of the patients had papillary histology; 88% had prior surgery, 70% had received prior 131Iodine, 45% had received prior radiotherapy and 15% prior chemotherapy. A partial response was observed in 30% of patients, with an additional 38% having stable disease for 16 weeks or more. Median progression-free survival was 18 months. Axitinib was discontinued in 13% due to side effects or adverse events. The main side effects included stomatitis/mucositis, diarrhea, hypertension and nausea.

The authors also reported that soluble VEGFR2 and VEGFR3 plasma levels decreased with increased VEGF in the blood. They conclude that axitinib has “has compelling anti-tumor activity in all subtypes of advanced thyroid cancer.”

Comments: These findings are very important, as there are very few effective treatments available for refractory advanced thyroid cancer.

Related News:

Axitinib May Be Effective in Advanced Thyroid Cancer (6/21/2007)

Axitinib Provides Activity in Kidney Cancer (10/29/2007)

Axitinib plus Taxotere® Maybe Superior to Taxotere alone for Metastatic Breast Cancer (06/19/2007)

Axitinib, an Oral Tyrosine Kinase Inhibitor, has Activity in NSCLC (06/15/2007)

Reference:

---

¹ Cohen EEW, Cohen LS, Vokes EE, et al. Axitinib is an active treatment for all histological subtypes of advanced thyroid cancer: Results of a phase II study. Journal of Clinical Oncology 2008;26:4708-4713.

© 1998-2007 OncoEd.com All Rights Reserved.

These materials may discuss uses and dosages for therapeutic products that have not been approved by the United States Food and Drug Administration. All readers should verify all information and data before administering any drug, therapy or treatment discussed herein. Neither the editors nor the publisher accepts any responsibility for the accuracy of the information or consequences from the use or misuse of the information contained herein. © 1998-2007 OncoEd, Inc  All Rights Reserved.

These materials may discuss uses and dosages for therapeutic products that have not been approved by the United States Food and Drug Administration. All readers should verify all information and data before administering any drug, therapy or treatment discussed herein. Neither the editors nor the publisher accepts any responsibility for the accuracy of the information or consequences from the use or misuse of the information contained herein.

Henna Treatment Not Tried Yet

Hi, All - I've gotten a couple emails asking if I'd tried the Henna Treatment for Hand-Foot Synodrome and, if so, how it worked.

I haven't used it yet.  I've been using Bag Balm on my feet frequently every day since I started on Sutent again.  (That is September 17.)  So far I haven't had any symptoms.  I hope it continues!  

If I do try it during this drug cycle, which ends on October 15, I'll post the results here.

John

A Mixed Bag This Time

Hi, All - 

I went down to St. Louis yesterday with my brother, Dave, for my 6-weekly checkup.  I got the results of last week's CT scan as well.

It was a bit of a mixed bag.  The bad news is that there was some growth in the largest tumor in my lung.  It has grown a millimeter from the last CT scan in July.

My first thought was "Well, a millimeter isn't anything!" and I wondered if they measured it accurately.  Of course, they said it was an accurate measurement as it was done by their computer.  I still have to wonder; If they placed the cursor in the wrong spot, it could be off a millimeter, but who am I to argue?

The good news is that I am still in the clinical trial.  When I signed up for it more than a year ago, I was told any growth or new tumors would cause me to be removed from the study.  I've now found out that they're not quite that harsh about it.  Even though I've had some growth, the tumor itself is still much smaller than it was when I started on the Sutent study and that's what's important.  There are no new tumors and the other tumors are unchanged.

I was taken off the drug a week early in the last cycle because the side effects were so bad.  I was worried that they'd have to take me off the drug because of that, or at least lower the dose. Fortunately, my Hand-Foot Syndrome was only at Stage 3, rather than the Stage 4 they thought at first, so I'm able to continue taking the Sutent at the same level, rather than reducing the dose which is also very good news.

So, all in all, I have to say that the good news outweighs the bad news  (Yea!)

I head down to St. Louis again on October 29, which also happens to be my birthday.  (Is there a better way to celebrate turning 48 than by traveling 500 miles to visit an oncologist?  I can't think of any, either!  )  No CT scans are scheduled until December, which is even better news.  (Not that I don't enjoy getting pumped full of dye and locked in a giant donut.)

There are some interesting developments in treating Hand-Foot Syndrome, which is my most annoying side effect.  There's a new drug called Xyfid that is waiting for FDA approval.  There is a clinical trial using nicotine patches to help treat HF Syndrome in breast cancer patients.  Some people suggest using DMSO to treat it, but I'm a little leery of that.  There's also a lot of chatter on the internet among cancer patients about a concoction of henna, hot water, and lemon.  I have to admit that last one sounds odd but harmless and I might try it.  (My St. Louis oncologist didn't think it would work, but he said he didn't think it would hurt, either, so why not?  And, really, whose feet wouldn't look better with some lovely dye on them?)

Thanks for all your continuing prayers and support.  Hope you're all doing well.

John

Funniest Bit of the Campaign Season

Formula for the Henna Treatment for Hand-Foot Syndrome

I haven't tried this yet, but I plan to when I start my next cycle of Sutent.  It sounds interesting and I'll post my results.

Mix it with hot water and squeeze in a splash of fresh lemon juice. Let it cool.

Collect your supplies – a large garbage bag, a few plastic grocery bags, or old towels; a small non-metal bowl and non-metal spoon; a lemon.

Put half a cup (120 ml) of very hot water, even boiling, in a non-metal bowl. Add fresh lemon juice, a half teaspoon or so. Using a non-metal spoon, add the powder a little at a time. You’ll probably be using about a quarter of a cup (60 g) to a half cup (120 g). Stir. Thicken until it is about the thickness of toothpaste, pudding or frosting – no drippiness. Let it sit until it COOLS. Some people say overnight, I only wait until it cools.

You don't have to be exact with the amounts. I like it thick so it doesn't drip, but it takes longer to dry.

Apply the henna
I pick a place where I want to sit for an hour and cover an ottoman with the large garbage bag.
Apply to the skin with a non-metal tool like the back of a plastic spoon, a paintbrush or a long-handled wooden spoon. (It’s easier for someone else to do it for you.) Apply until the area is thickly covered, like frosting a cake or plastering a wall. Leave on for 5 - 6 hours. It’s messy. I let it dry, then I use the plastic grocery bags on my feet to walk around (carefully). Some people bandage the hennaed area, which I have not tried.

To get the six hours, I put an old towel on the bed and leave my foot out from the covers for the night. You will get crumbs of dried henna on the bed but if it’s dry when you go to bed, it won’t stain. I wasn’t harmed by leaving it on if I slept longer than six hours. The dog did not lick it off.

Xyfid approval moving along

Henna as a treatment for Hand-Foot Syndrome?

Off of Sutent Early This Cycle

I forgot to post that I was taken off Sutent on August 27.  This is a week early for that cycle.  The side effects, especially the Hand-Foot Syndrome, were just killing me.  The Hand-Foot got to stage 3.  

I hope it will be easier the next cycle which starts on September 17.

I'm looking for various things that may help and I'll post what I find on this blog.

DMSO is also suggested as a treatment, but I'm concerned about how to find a safe supply.  I'm not comfortable with the idea of using an industrial lubricant on my feet without some sort of medical oversite.

Xyfid is still moving along in the approval process.  I hope it is OKed soon!

Good News!

Hi, All - I went down to St. Louis Wednesday for my 6-weekly check up.
I got the results of my latest CT scan then and got some good news: The
largest tumor is my lung has shrunk 24% since first starting on the drug
Sutent in April, 2007!

Needless to say, I'm very excited and grateful to hear this. It makes
putting up with the side effects so much easier when you get news like
that.

The tumor is still considered to be pingpong ball sized, but now it more
like a crushed pingpong ball rather than a nice round one. (This is my
St. Louis oncologist's description, not mine.)

The several smaller tumors scattered around my body remain, but there is
no growth in them and no new tumors and that is still the main point of
this clinical trail.

A summary of findings was presented earlier this summer. The results of
the study have been positive and they are investigating whether to
expand it. If it is expanded there is some hope that my oncologist in
Lincoln may be certified for it or, if not him, then maybe a cancer
program in Omaha. (Although I would miss seeing Sara's aunt and her
cousins on my trips to St. Louis.)

The most unpleasant side effect for me remains the Hand-Foot Syndrome . There is
some research going on in that area, but none of it is with my particular drug. However, more and more of the new cancer drugs are causing this particular reaction so there is hope that there will be more research on it (THE SOONER THE BETTER).

Thanks again for all your prayers and support.

John

Clinical Trial Update from May 14, 2008

Hi, All - I went down to St. Louis yesterday for my 6-weekly visit. No CT scans this time; I'll have a scan the second week of June.

I just passed my first anniversary on Sutent and doctors with the clinical trial are pleased thus far. In the past year, I've had no new tumors and no growth in the existing tumors. There has even been some shrinkage in some of them, forwhich I am very grateful. They're a bit concerned that some of the medical side effects (like anemia, immune system suppression, Hand-Foot Syndrome) seem to be getting more pronounced, but not to the point that they think they need to suspend treatment or reduce the dose. Personally, I'd be happy if I could taste things again, but that's a small thing. (There's an interesting blog entry from by kidney cancer patient on what he calls "Sutent Mouth" that pretty much matches my experience.)

The study leaders still plan to present a paper on the study this summer. Hopefully, that will lead to an expansion of the study and maybe I can participate in it from Lincoln, rather than going to St. Louis every 6 weeks. (Although I'd miss seeing Sara's aunt and cousins if I didn't do that!) They took a picture of my eyelashes this time to show to other doctors: The ends are white (like most of the rest of my hair) but the roots have turned dark in the 2 weeks I was off the drug. It makes for a rather odd look. (I just hope I get model credit if the picture is published!)

My next trip to St. Louis is June 25 when I'll get my latest CT scan results.

Thanks for all your prayers and support for me and my family. My Lincoln oncologist recently had a stroke. He's expected to make a full recovery but I'd appreciate it if you could include him in your prayers as well.

John

New Blog

This is my first post in a blog of any sort and I feel ridiculously self-conscious about it! I doubt that anyone but me will ever see it, but I'm told writing about the cancer experience can be helpful.

As I mentioned in my (too lengthy) introduction, I have been in a clinical trial using Sutent to treat my metastasized thyroid cancer since April 24, 2007.

I still don't understand how lymph node and other materials can turn into thyroid material, but that's what has happened to me. Currently, I have tumors in my neck, chest, abdomen, and lungs. Because of that, they are considered inoperable.

Most thryoid material is "iodine-hungry": That is, it absorbs iodine and the radioactive material that may be in it. That's why the standard treatment for thyroid cancer is to surgically remove the thyroid and then take a dose of radioactive iodine. This radioactive iodine is drawn to any remaining thyroid material and kills it. (I may write about that experience some other time.)

I had surgery first in November, 1999, followed by radiation ablation in January, 2000. Scans showed we got all the cancer then and I was fine for almost 7 years.

I found a mass in my neck in late November, 2006. It was biopsied and found to be a lymph node that had turned to thyroid material and was cancerous. It was surgically removed in December, 2006, and I had any dose of radioactive iodine in January, 2007.

Follow-up scans showed that the radiation ablation did not get all the cancer. Biopsies of the tumors in my lung showed they were radiation resistance.

Since there is no treatment for this cancer, we started searching for a clinical trial. We were fortunate enough to find one at the David C. Pratt Cancer Center in St. Louis, MO. I was accepted into the trial and have been taking Sutent since April 24, 2007.

Since that time, I have had no new tumors and have actually had some shrinkage in the existing tumors. I am profoundly thankful to the Lord and to medical science for this.

But I think that's enough for today. When will I write again? I don't know - I guess when I have something to say! ;-)

H

April Clinical Trial Update

Hi, All - I went down to St. Louis yesterday for my every-6-weeks visit.  It was a beautiful day: the temperature was in the 50sand daffodils, forsythia, and star magnolias were blooming - hopefully, it will get that way in Lincoln soon.

No CT scans results this time.  They did say that my natural thyroid hormone levels were lower, which is a good thing.  The tumors are thyroid material and produce the hormone.  (In spite of that, I still have to take thyroid replacement drugs - I don't understand this, but there it is.)  They can measure the natural thyroid hormone level and the lower the reading, the less hormone the tumors are putting out.  It may be an indication that the tumors are smaller.  (This is how I interpret it.)

I've been in the study for a full year now and I've  found out a little more about it.  There have been a couple deaths in the past year, but most of us are responding well.  (That's all the detail they will give.)   They still plan to present a paper on it in June and we'll see what happens after that.

They gave me a couple more things to try for the side effects, which were pretty bad this last cycle.  I had a nasty virus in the 2 weeks that I was off the drug before starting the last cycle and I think starting from a lower physical level made the side effects worse.  I'm feeling pretty good at the start of the current drug cycle so I'm hoping it'll be better this time.

Next trip down is May 14.  I think I will have CT scan results this next time.

Thanks for all your prayers and support!

John

February Clinical Trial Update

Hi, All - I flew down to St. Louis yesterday for my 6-weekly exam.  I decided to try the local train/bus system rather than rent a car.  That went well, but it actually took longer to get from the airport to the hospital than it did to get from Omaha to St. Louis!  Got to have lunch with Sara's Aunt Rosemary, which was fun.  (She always knows the best places.)

 

I've been coughing up blood for the past few days, so I had to have a chest x-ray when I got down there.  Got the results this morning.  The x-ray showed signs of "mediastinal adenopathy".  This is scary way to say "swollen lymph nodes between one's lung under one's breast bone".  It's only an observed symptom and not a diagnoses.  It could be anything from cancer to AIDS to an infection to benign swollen lymph nodes.  To find out for sure, I'm going to have a complete body CT scan on Monday.  I get to drink a couple bottles of Barium dye for it.  (I hope it tastes better than some people say.)

 

It's hard not to be concerned about this, but I'm sure everything is fine.  I just had a head/neck/chest CT scan in January and that showed nothing.  My oncologist in St. Louis said it's unlikely there's been an explosively growing new tumor pop in up that time, so I'm betting it's just an infection and I'll get to take some antibiotics. 

 

I'll let you know the results of this new scan.

 

Thanks for your continuing prayers and support.

 

John

Hi, All - I went down to St. Louis yesterday for my 6-weekly checkup with the Sutent clinical trial and got some good news.   My CAT scan last week shows no new tumors and the existing tumors show no new growth.  I started on my 7th course of the drug yesterday and they have some new ideas to try with the side effects.

 

I found out a little more about the study as a whole.  There are only 50 of us in it nationwide.  (I had thought there were 50 of us in the St. Louis location.)  I'm one of the few men and I'm the youngest person in the study.  Most of us have shown good results.

 

The researchers are preparing a paper on the current phase of the study.  It will probably be presented this summer.  If it's accepted, the study may go into new larger phase.  I have hopes if this happens that my oncologist in Lincoln might be able to be part of it, or failing that, maybe a practice in Omaha will take part.

 

Thanks for your continuing prayers and support!

 

John