1

(15 replies, posted in Pain Management)

To all:

My port pain has been resolved for the most part. After numerous test, my oncologist figured it was the clinical trial drug that I was on that was causing the pain. I doubted her in my mind, but after a month - no more pain. I was able to control the pain somewhat by taking 10-15mg of oxycontin every 12 hours - AM and PM. I would then take percocets for breakthrough pain (which helps against inflammation because it contains tylenol).

Good luck
John

PS - Your port might look yellow from the iodine stuff they swipe around it to sterilize it.

PPS - I always apply lidocaine 30 min prior to access to numb the skin. Ask for a prescription if you don't have it.

An update about my experiences at the Cancer Institute of New Jersey. After my last CT scan and ultrasounds, I was taken off the clinical trial I was on. That consisted of gemcitabine (gemzar) and a drug being developed by a Spanish pharmaceutical company called plitidepsin (or apeldine). The bad news is I have grown a new tumor in my liver - a small one, 1-2cm, near the dome, which luckily is not very dangerous health-wise. For this reason, it is considered that the cancer has "outsmarted" the gemcitabine drug.

The good news, however, is that activity in my lymph system has decreased significantly. Hopefully that will continue to happen and we can get the tumors under control as well as I start up on a new trial.

This new trial is for a drug developed by Abbott Labs in Illinois, named ABT-263 - which I assume is just the research name and if it ever gets to market will be called something different. That drug will be offered with "carbo-taxol" (carboplatin/paclitaxel). I have never heard of paclitaxel. Carboplatin is in the same family of drugs as cisplatin and oxaliplatin (platinum-based drugs).

I'm excited to try out a new treatment. I will be the first patient for this trial at CINJ (others will participate at another institution). But I'm also anxious/fearful of new side effects. I handled the previous drugs very well and now I'm a bit spoiled about feeling "pretty good" on most days. But I do this not only for myself, but for every person who has come before me, and those who will come after - - advancing medical science's knowledge of how these things work. They may not save me, but they may help someone else.

FYI - These are both phase 1 trials so it will be quite a few years before the drugs are available to the general public. But if anyone in NJ wants info on CINJ re: these trials, you can call them at 732-235-6777. Dr. Vassiliki Karantza-Wadsworth is overseeing the trial.

I was having the same problem. #1 - They made sure that I had a blood culture when the fever hit. #2 - They tried combinations of antibiotics, not just one by one.

I'm now on Bactrim and Flagyll semi-permanently. Fevers are under control.

FYI - I am also allergic to penicillin so that limited the antibiotics choices.

4

(8 replies, posted in General Discussion)

My doctors have me on two antidepressants that also increase appetite: Lexapro and Mirtazapine. I'm also on Ritalin which helps to combat fatigue. I would definitely ask about these - they are all small pills, easily swallowed and have multiple positive effects for me.

I take the Lexapro and Ritalin in the morning and the Mirtazapine at night as it has a sleep inducing effect at low doses.

5

(16 replies, posted in Blogs)

Thanks for the interest. For those not aware, I just posted some photographs on my site that are on display at the Cancer Institute of NJ.

Marion - not sure of the comments snafu. I'll look into it.

6

(2 replies, posted in Introductions!)

Hi Wendy - I have plastic stents and no experience with metal stents. My understanding has been that insertion of metal stents makes surgery a bit more complicated or difficult. You may want to clarify this as well as the external drainage.

From what I know, surgery is usually reserved for bilirubin levels under 2.0 or lower... Normally after my ERCP procedures my bilis jump for a day or two and then come down.

Best of luck,
John

This is great news for all of us, Marion. You are a great advocate for us and so very kind and helpful with everything you do. We couldn't ask for a better representative.

Go in there and kick butt!

When I'm feeling very tired, walking around and exercise sound much too intimidating. Might I suggest small exercises that can be done while lying down or sitting?

For instance, if I'm watching tv on the couch, I might straighten my legs and flex my feet by pointing the toes away from my head, and then bringing them back towards my head. This helps to build some calf and shin muscles. Then I'll take each leg, one by one, and raise it just a few inches off the couch and squeeze my quadricep muscles. For my arms, I bought a hand grip exerciser.

None of these things will make him a body builder, but they are simple and not intimidating. And sometimes just getting the blood circulating into the muscles again will rejuvenate just enough to do some other exercises.

-John

9

(6 replies, posted in General Discussion)

As far as body smells, I find myself smelling differently than I normally do - especially after waking in the morning wet from night sweats. I really can't stand it sometimes, but there's not much I can do about it besides cleaning myself. I think the chemical makeup of my blood is different so it leads to a strange/different smell than I'm used to.

From someone who never had depression issues before, I can now understand why people need medication to keep it under control. Originally my doctor prescribed Lexapro to be taken in the morning (and also stimulate appetite) and she added Mirtazapam to be taken at night - at a low dosage it causes drowsiness which helps me to sleep.

Highly recommended.

11

(12 replies, posted in Introductions!)

Re: Constipation - My formula, which has worked out well for me, is Senna-S (laxative and stool softener) 2 pills in the AM and 2 in the PM as well as 5 prunes in the morning.

If you don't have a bowel movement after two days, go for something stronger - suppository or an enema if you really need it - before things get too bad and painful.

12

(10 replies, posted in Introductions!)

Hi Deb - Just off the top of my head, I know that the Mayo Clinic has a facility in Jacksonville Fl. I know that is not very close to Fort Lauderdale, but if you were thinking of getting your dad somewhere with top shelf doctors, that might be your best bet. Not sure what southern FL has to offer.

Good luck
John

13

(15 replies, posted in Pain Management)

Had the ultrasound this morning. No clots or clogs. Which is good I guess. A random doctor at the facility took a look and said, "hmmph. I don't have any answers for you and I would just say 'take two aspirin and call me in the morning'". He did recommend Motrin over Oxycodone simply for its anti-inflammatory properties. I'm going to give it a shot.

14

(15 replies, posted in Pain Management)

Update - Saw my oncologist today. She doesn't think it's an infection. She ordered an ultrasound to check for clots (to be done tomorrow morning). She suggested it could be the clinical trial drug that I'm on, or my body rejecting this foreign object inside of it. In the meantime, I'm staying medicated on oxycodone for the pain. Hopefully it will decide to go away as randomly as it decided to show up.

15

(15 replies, posted in Pain Management)

No redness/infection. I wonder if I slept wrong somehow because it is more sensitive when I turn my neck to the left (pulling the muscles away from the catheter).

The port itself does not hurt.


Thanks for your reply Suzanne. Looking forward to what others have to say.

16

(15 replies, posted in Pain Management)

Hi all - I did a search through the forum and couldn't find any answers to my question, so here goes:

I had a port installed in my right chest abut 5-6 weeks ago. Since then I've undergone 3 chemo treatments. I have not had a problem with any of that. But just this week, my week off from chemo, the area above the port where the catheter is, has been sore. It feels tender like as if I had a bruise there.

Has anyone experienced anything similar? I wouldn't be too worried about it, but it doesn't seem to be going away.

Thanks
John

Hi Katie - I feel connected to you since we're both from NJ and relatively young with this disease. Although I'm 30, I only feel 22 smile Anyway, I'm on gemcitabine and a clinical trial drug. I had a port installed. It is very useful - my right arm is very thankful. Not to scare you but the port procedure was a little more painful than I had expected... I think the sedation did not kick in until after it was almost over.

My side effects have been lots of fatigue for 2-3 days after treatment and only this week have I felt a little bit of nausea. Not enough to get me sick, but just a little uncomfortable.

My hair's been thinning since I started chemoembolization treatments in January. I never get clumps but a visible amount comes out anytime I wash my hair or sometimes as I sleep. Lucky for me, I keep it short anyway, so it's not that noticeable. I read somewhere that for women, sometimes it's easier to get a short haircut before losing it all - to maintain a sense of control over it. Something to think about I guess...

Good luck with everything.
John

18

(3 replies, posted in Adverse Reactions & Side Effects)

Fatigue is my biggest problem as well. Sometimes I chalk it up as a side effect to whatever treatment I'm receiving: chemo therapy or chemoembolization; but I was tired before treatments too. For instance, today I slept from about midnight until 1PM and still needed to take a rest on the couch around 7PM or so. I imagine I'll go to sleep around midnight as well.

Talk to your doctor if the fatigue is overwhelming/debilitating. I've been prescribed two different drugs to combat it - Provigil, which did not work for me (but might for someone else) and Ritalin (believe it or not) which does seem to help a bit.

Other than that, I think it's just something we'll all have to deal with...

Best of luck
John

Love to hear the good news Kris. And would love to hear about the Swedish summer now that you can enjoy it some.

Yes, send reports to other doctors. Even if you're happy with the doctor you have, some times for convenience sake you end up with another doctor or group of doctors. That's what happened with me and it's worked to my advantage so far.

Walk- for what it's worth, I had a CE combo of oxaliplatin, mitomycin and doxyrubicin. I did not have much nausea but the fatigue really kicked my behind for two weeks after treatment.

22

(22 replies, posted in General Discussion)

I really haven't had any problems with endoscopies - they knock me out each time when they do them, so the only side effect is a slight sore throat for a day or two.

These posts are so encouraging. Congratulations. It's very inspiring as I start my chemo regimen today that other people are scoring positive points.

Something else that inspired me today was a letter I received from a friend... Pardon me for digressing, but he said this:
"John, your fight is not over, not by a long shot. You wrote at some point that maybe you would be the 'miracle kid'... But it's kind of like the old paradox of Predestination - - You are saved already, but you should nonetheless demonstrate this fact by the way you live your life. In other words, you ARE the miracle kid, so live like it."

I found this little bit to be especially motivational - no matter what age you are diagnosed with cancer, we can all be miracle kids.

Jean et al. - Thanks for the support.

Plitidepsin is a new drug being developed by PharmaMar which is a Spanish drug company. This is a Phase 1 trial so it still has a ways to go before coming to market. I believe it is a cytotoxic drug like Gemzar which kills cancer cells (and healthy cells) directly. The only places where this is being tested are the Cancer Institute of NJ and some place in France.

You can read my complete post about it here: http://johnur.typepad.com/my_weblog/200 … ition.html

But I just wanted to share that after two chemoembolization treatments at Johns Hopkins, my main liver tumor has shrunk 1.5cm (from 6.5 to 5.0) and much of it is in a state of necrosis. The doctor wouldn't go so far as saying it was completely dead, as there might be some cells on the edge of the tumor that could not be seen in the MRI... but she was very positive.

Of course, I'm happy - even more so because the treatments kicked my butt and I'm glad it was not for naught.

Best of luck to everyone else.
-John