Tag: interferon

Losing My Hair?

hair

Interferon is not supposed to cause your hair to fall out the way that conventional Chemo does. The traditional chemo patient story is that one day, after the second or third treatment, all their hair on their entire body falls off in one day.

I had relatively little hair loss up until month two or three, when I started to notice excessive amounts of hair in the drain… *when I didn’t wash my hair!*

I also notice that if i undo a hair band, there is maybe 5x the amount of hair that would normally be there.

And I have noticed I can see my scalp. My hair is *thinning* which is what IFN is known to do.

I told my dad, and he jokingly reminded me that this was about when he started to go bald. But we have different mother’s fathers, and my mother’s father didn’t go bald (to my knowledge), so I have hope.

Atarax Update: New Side Effects

Nothing is easy, and there is no free lunch with this stuff.

The Atarax (which I am taking at a lower dose, with greater frequency), *is* helping with the Dysesthesia attacks. Before I would get at least one attack that was at least a level 7 or 8 on a scale of 1 to 10, and several attacks in the 2 to 5 range. The drugs have pulled that top threshold down to a once a day level 4 or maybe level 5 attack, with several attacks that are in the 1-3 range. These smaller attacks I can manage with breathing, self-hypnosis, and temperature (ice and just walking outside.)

So… the side effects. I’m irritable, I’m having nightmares, and I have completely lost my libido. Like “whoosh” gone. It took me a sec to realize that is what had happened. But yes, that is what had happened. You win some, you loose some.

I told my therapist about it, and she said that she was frankly amazed that I managed to continue to have sex through this whole thing at all. Her comment was that between the hormonal shifts, and the physical falling apart, someone not as strong or vital or depression resistant would not have even made it this far.

More Drugs Please

I went up to the dr yesterday, and got my FMLA papers signed.

The other goal was to get some drugs to help with the dysesthesia attacks, as well as show him all of my lesions and bleeding sores, and other gross things.  I mentioned my dermatologist gave me something for my lesions which had helped a little bit, and another which didn’t.  He immediately asked “were they steriods” and i said I didn’t know, and he kind of got interogative with me, asking again “well, you should know if they were steriods.”  And I immediately went into a full blown dysesthesia attack.  its that confrontation, that conflict, that interogation, that possibility that I (the expert) might have made the slightest mistake.  In a healthier state, I could have had it roll off my back.  But not now.  The slightest confrontation over something as simple as a scheduling confusion sends me into dysesthesia land.  Which is why it is close to impossible for me to teach on the IFN.  I tried a little bit at the studio, and I just end up clutching my side shivering in a fetal position.

So in a sense it was perfect timing.  He actually got to see it happen.  And see that it was real.  (Maybe my subconscious produced it for him…)  He immediately went into support mode, telling me I was doing well, and that if I wanted I could take a week or two break.  But I dont want to take a break.  It just will delay the overall end point.  I only want to take a break if I’m too sick to take the drugs.  RIght now my WBC is at 2.5, and holding steady there.  It dipped to 1.8 after Banff, but has been steady at 2.5 otherwise.  3.5 is the low range of “normal” so I am still immunosurpressed, but I’m hanging in there.

If the goal was to get drugs, that was a success.  He gave me a prescription for Atarax which is an antihistamine.  Now that I look closer, it is just a higher potency of the over the counter drug I was already taking (Zyrtec). And it is ‘sedating’ so i’ll be more stoned and sleepy.  I’m supposed to give that two weeks, and if that doesn’t take care of the dysesthesia, I start taking Neurontin which is actually an epilepsy drug, which is now widely used to deal with neurological pain.  Frankly, the closest thing I can describe my attacks as, are seizures: I am not totally out of control of my body, but I loose a lot of control to the pain, I go fetal, and afterwards I am disoriented and kind of stoned.

The other thing that happened (in the midst of my attack, me trying to breathe and do meditation on the paper on the exam table, while my doctor keeps saying “you’re doing great”) is that I got my FMLA papers signed.  My “doctor’s note” so to speak.

We calculated out my treatment schedule, and if I take *no* breaks in treatment I will be done the last week of July 2009.  But considering I’ve had to take 4 weeks of breaks in the first 17 weeks of self injection, it is unlikely I will make it through the remaining 31 weeks of self-injection without having to take a break.  So realistically, we’re talking an end of August beginning of September final injection.  As the drug takes some time to work its way out of my system, my Dr has designated a 1 month recovery period, so he has me coming back to work after September.  E.G. October 1st.  I will more or less miss the first 5 weeks of the semester.  I’m working out the details of what that means.  sitting w/ my dr and counting out when I would be done forced all of this.  frankly i was very much in denial of the end date.  it seems so far away, i felt better not thinking about it.  but because it runs up against the fall semester, it is important to address

EPIC Craigslist FAIL

So I posted that message to Craigslist, trying to find a home for the extra IFN in my injection pens.  I had he best of intentions, but boy was I not thinking.  Here are a couple of the 10 responses:

From Laurence:

Hi,  Your heart is in the right place,  but the infection risk of someone else using your partially used pens is HUGE!!!!!!  Please take the ad down ASAP before some less informed actually takes you up on your generous offer.  I would hate to flag you,  no medications to be listed as per craigslist rules, I will trust you to do the right thing.  I work in healthcare and an fully aware of the cost of this stuff.  Please don’t put someone else at risk.  Great idea,  but there has to be another way to help folks.  Lobbying in albany or DC or contact local politicians to force Govt to  further subsidize these meds would be a great start.  Best of luck to you.  Happy thanksgiving!

From Gerthvan

I don’t need the interferon, but I think you are terrific.  Have you asked your doctor if there is a patient that might could benefit?  All the best to you!  Happy Healing and Happy Thanksgiving.  You are a good soul.

From Gigzilla

Hello,
I admire your generosity, but if this stuff is in a syringe (self injection pen??)  it would not be wise for more than one person to use it. If I am mistaken please forgive me. I am sure you mean well.       G-47

From Anthony

Very, very nice and thoughtful.
Hope you get better and Happy Thanksgiving.
Anthony

So of course the Hep-C patients would be well versed in the nuances of sharing needles, sterility of needles, etc.  And me, the silly Melanoma patient is clueless.

I freaked out when I realized this.  I had a total pins and needles attack. So fucked up the thought that my attempt to help someone could make them worse.  Fuck, what a mind trip.

Back when I found out I would be injecting my dear friend KM was all excited to teach me how to hit a vein (no he’s not a nurse, no he doesn’t hit veins anymore) but was dissapointed when he found out that all I had to do was jab it in and press the plunger.  The things that IV drug users know that come in handy.

I just posted this to Craigslist

We will see if it gets taken down.  I think it violates the Terms of Service.

Interferon – Intron A

I am 14 weeks into a 48 week Interferon (Intron A) regimen for Stage III Melanoma Cancer.  I get a monthly supply of IFN in 4 self injection needle pens. My dosage is 20 MIU, there are approximately 75 MIU per pen, which leaves approximately 13-15 MIU in each pen after I am done with it.

This stuff costs a bloody fortune, but my insurance covers it. Each of those pens w/ the 13-15 MIU is probably “worth” $500.  And I have 14 of them right now, and a new one every week.  So that’s $7500 of IFN.

Obviously, it is not enough for a full course for a Melanoma patient (10 MIU/m^2), but would work fine for a hepatitis c patient, or a MS patient (3 MIU/m^2).  Though to be honest, I’m not sure what the differences are in the brands/variants of Interferon Alpha.

I am hoping to find an IFN requiring patient who does not have the good fortune of having health insurance.  I don’t want payment.  I just want these insanely expensive drugs to help save someone’s life.

Seeing things, part two

So I went to all my doctors this week.

I’ll post about my hypnotherapist in a bit, but I’ll just say that it is great.  It is really helping.  I’ll explain more in a followup post.

My Oncological Psychiatrist said that the “seeing things” was probably IFN related.  He upped my Lexapro and Klonopin to take the edge off of my anxiety and help with the pins and needles.

My Oncologist says that unless I am having “night tremors” the visual abberations are not anything to worry about.  He says that the lesions and ulcers and strange skin textures are all “to be expected.”  He said that the pins and needles are a new side effect, but that none of it surprises him.  And, he said that “unless you skin is falling off, I don’t see any reason to modify your treatment.” He was quite concerned about depression, though.  He asked a lot about that.  He said that it starts to hit four months in, and gets worse through months 7 and 8.  By the 9th month, it gets better: either you have adjusted, or you see the light at the end of the tunnel, or something.

My psychologist says I’m doing well

And my dermatologist said that all the skin stuff, and mouth lesions stuff, are not growths (e.g. cancer, or warts) but are something called Acral Erythema.  As far as I understood, Acral Erythema is a skin reaction to a lowering of blood supply at the furthest extremities.  One of the things that the IFN does is reduce blood flow to the capilaries, hence the problems around my hands, ankles, and my tongue.  He gave me some cortizone cream, which has not seemed to do anything yet.

Immunosupressed Again

My white blood cells are down to 2.3.  Acceptable range is 3.5-9.5.  The doctor’s PA is going to speak to him and let me know what they want to do about it.

In the mean time, that might explain why I keep getting ulcers in my mouth.  My tongue has been feeling funny, and i looked at it in the mirror, and sure enough, its got funny spots, splotches, cracks, and bumps on it.  These don’t hurt as bad as the ulcers on the gums.

mouth sores

39 weeks to go…

i just finished my 9th week of self injection.  18.75% done.  39 weeks go to.

if you count the 4 weeks of IV IFN, i’ve done 13 weeks, which is exactly 25% of the 52 weeks of treatment.  of course, that doesn’t count my time on drug holidays.  i started the IFN on June 16th (the day before I started this blog…) Which is 4+ months ago.

I have at least one month of drug holiday time in there.  it feels like i was on holiday for more than that, though.  i guess it was just one week in the IV IFN, two weeks in between IV and SubQ, and then two weeks when i got back from Banff and was super sick.  I guess the first week back on the IFN felt like a holiday b/c I was only on a 10 MIU dose.

i was diagnosed on feb twenty-something.  I got the first call on the 20th, but didn’t formally hear the words “you have cancer” until the 22nd.  so that makes it 8 months i’ve been dealing with this.