Natalie,

If you feel like garbage tomorrow, then call in sick. Your students will be fine.

Tell your neurologist about how you feel. It is important for the neuro to have a complete picture of how you are doing.

By the way, if the infusion center does that again, tell them that you are going to another center where you will be treated better. That will get their attention.

-Vic

I wish they would have waited to start this trial on myeloma cancer patients until after the FDA completes it's investigation on whether this drug is CAUSING melonoma cancer . . . .


WASHINGTON — The Food and Drug Administration will begin posting every three months a list of drugs whose safety is under investigation because of complaints brought to the agency's attention by drug companies, physicians and patients....

Drugs under investigation by the Food and Drug Administration, what they are used for and the potential problem:

R-Gene 10: a growth hormone; pediatric overdose due to labeling/packaging confusion
Suprane: an anesthetic; cardiac arrest
Cymbalta: For depression and other conditions; urinary retention
Intelence: an HIV medication; bleeding into joints
Carac and Kuric: creams for skin conditions and fungal infections; name confusion
Heparin: a blood-thinner; serious allergic reactions
Extraneal: used in kidney dialysis; low blood sugars
Humulin R (U-500): insulin for diabetes; dosing confusion
Stromectol and Warfarin: an anti-parasite drug and a blood thinner; drug interaction
Tykerb: for advanced breast cancer; liver damage
Revlimid: for multiple myeloma; severe skin blistering and bleeding
Tysabri: for multiple sclerosis; skin melanomas
Nitrostat: for angina; overdose due to labeling confusion
Sandostatin LAR: for abnormal bone growth; bowel obstruction
OxyContin: a painkiller; drug misuse, abuse and overdose
Definity: used in cardiac imaging; cardiopulmonary reactions
Dilantin injection: for epileptic seizures; serious skin reaction
Seroquel: for bipolar disorder; overdose due to sample-pack labeling confusion
Tyzeka: for chronic hepatitis B; nerve damage
Tumor-necrosis-factor (TNF) blockers: for juvenile arthritis; cancers in children and young adults

Source: The Associated Press

http://seattletimes.nwsource.com/htm...fdalist06.html

Cherie

While the FDA HAS come out with a list, it's due to their attempting to clarify ( and not very well IMHO ) the AERS database entries.

The melanoma warning is a result of two letters written by two doctors in the same practice, to the American Journal of Neurology(?) about two patients who supposedly had prior melanomas kick into high gear after Tysabri infusion. They BOTH had melanomas prior to starting Tysabri, one on a shoulder and one with a family history of a rare eye melanoma.

No proof is available that it was caused in any way by Tysabri. Many people report that moles and freckles have shrunk or disappeared after Tysabri. I have stats on melanoma in the US and it's entirely possible that Tysabri may actually help PREVENT melanomas!

With over 30 K patients now on Tysabri, if there is a connection, there will be more cases. As usual, the warning is BE VIGILANT to any changes in your health.

I have a few bumps that I am getting checked out next week. They have been on my leg for YEARS. It's entirely possible that they are skin cancers. As a whitewater guide I was exposed to the sun daily for MANY years. I used sunscreen religiously, but just because you do what is recommended, doesn't mean you are not at risk. If they do turn out to be anything, I am NOT going to blame Tysabri, I'm going to blame sun exposure and lifestyle and the fact that I let them go for years without making any fuss about them!

I go for #18 on Thursday. That's 18 months and counting without a relapse! I do believe that I have an MRI coming soon too. I cannot wait to see the results from that! After my last MRI, with it's astounding results, I expect more of the same.

Don't let news reports scare you away from effective treatment. Partner with your doc and make sure you are vigilant when it comes to your own healthcare.

The trial is for MULTIPLE MYELOMA, not MELANOMA.

Two different types of cancer...

Oops, I knew that. I dropped the wrong "m" word . . . I'll fix my prior posting so there is no additional confusion.

I believe the cancer they are testing it a type of cancer that could affect the blood, bone marrow, and lymph nodes. I don't think it has a particularly great survival rate , so I suppose anything might be worth a shot, depending on the patient's particular "stage".

Are you SURE these are the only cases of melonoma reported so far? According to that link I attached, the FDA hasn't released how many cases, etc. have caused the investigation(s).

"The FDA will name the drug and the nature of the "adverse events" but will not describe their seriousness or the number of complaints received, officials said Friday. Being on the list doesn't mean the drug is unsafe, only that FDA is looking into that possibility."

Cherie

Just an update: By this morning (Thurs.) I was feeling great -- almost back to normal after having the infusion on Mon. followed by some flu-like symptoms. If I just have to feel crummy 2 days out of the whole month I will take it! One thing I noticed today is that the heat wasn't bothering me as much as normal. It was 95 here and very humid. I was hauling books and bags in the sun all around campus at noon and no fatigue, no shaky balance, and no tremors! Wow. Maybe it's the Ty. kicking in?
PS: Thanks Vic for the support. I canceled classes, took care of myself and rested, and did not feel guilty about it.

Good for you, Natalie.

-Vic

Infusion # 18 down.

No problems, no concerns, except for that pinpoint itching!!

This month I went in with long sleeves and farmer jeans and socks, all skin covered so as not to expose any skin to the furniture cleaning stuff. About 3/4s of the way through the infusion the pinpoint itches start. One here, one there, one way over there, one "there" It seems to me only mucosal areas or areas that perspire, or maybe it's the lymph node areas?

I didn't scratch. I started looking at the infusion bag and noticed that the Ty/saline mixture in the small bag seemed to be separating as it got closer to the end of the bag. Maybe it's concentrating as it settles?

I rode it out and as soon as they started the hour long flush of NaCL it stopped.

Next month I am going to try giving the bag a couple flips during infusion and see if that makes a difference.

At least I don't get bored while I am there!

I AM going to figure this out!

RW,

Have you considered taking Benedryl in advance (just in case it is an allergic reaction)?

-Vic

I just delayed my next infusion because I have a UTI. The pattern with me for UTI's is valuable to recognize:

(1) Before sign of UTI, I experience notable leg weekness.

(2) The UTI becomes obvious in one-two weeks, where the obvious signs are present (color, scent, etc).

(3)I take Cipro for a week and then it is gone.

It is good to plan for this potential issue by having two Cipro bottles at all times (one in my emergency kit and one for immediate use).

I will note the UTI on my next charts.

-Vic