Tag: side effects

My Mom on Hair

My mom wrote me back about the hair…

when I was on the prednisone for 2 yrs, my favorite barrette , that I had had since college, fell out of my hair in the ocean in Hawaii.  That’s when I knew I wasn’t imagining that there was a considerable change.  Didn’t get it all back, but most.  Drugs play alot of hardball on your body.  Fortunately, you have some to spare, in the hair dept, and it is not apparent  to the familiar eye.

Dad ran into Dr U last week, and he said all the side effects will be gone when you are done with the treatment.  That is something to look forward to.

that, and your Grandpa Morrie did not loose his hair, nor did his brother Saul

I remember when she lost that barrette.  I didn’t understand what the big deal was then.  I get it now.

i got a hair cut too

feenix

This is Feenix getting a haircut. One of my parents two dogs.

i got haircut too

my hair kept falling out.  and getting thinner and thinner.  and loosing body.

six months ago i started out with about two inches of pony tail that was a bit over 1 inch thick.  before this hair cut (six months later) i had about 2.5 inches of pony tail that started out at 1/2 inch, in withered to strands by the end.  normally, after 6 months, i would have a big bushy bunny tail back there, with four inches curling back on itself in a pom-pom bun.

today marisa noticed that i have half as much armpit hair as i did before.  or maybe less.  we couldn’t decide whether my chest or other body hair had dropped too.  i did notice a funny hairless patch on my belly, right near one of my early favorite sites of injection, which i have since had to abandon because it turned red (and still is red), and got scaly for a while.

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.

A Pat on the Back, and some Goals

Things that it is important for me to remember I have overcome:

  • Mouth lesions (twice)
  • Dysesthia is better
  • I have commuting routine
  • Hand lesions are better
  • My eye lesions and eczema are stable and not too bad
  • I am making food for myself and O (the independence is huge)
  • The lesions in my nose are better, though not gone
  • My genital lesions are gone
  • I have not had any major homeless-person-style dysesthesia attack in the street since I returned to NYC
  • I am much better at regulating my body heat outside which helps the dysesthesia
  • I can go grocery shopping

Things that are happening that I am managing to get through:

  • I still have dysesthesia, though milder
  • I still have major itching on my extremeties, and my lower legs and forearms are covered in scabs
  • I still have major heat sensitivity
  • My body still aches if I don’t take Tylenol and advil every six hours
  • I have lesions in both of my ears, with painful scabs
  • My mouth is so dry and raw I am having trouble eating: last week I actually couldn’t get most food In or bite on a sandwich because of the pain, now it is just uncomfortable to do so
  • I am struggling with holding on to my libido

Things I seem to have avoided entirely:

  • I am not depressed
  • I have not lost my appetite (though I have lost much taste, and gained much weight)
  • I have remained phenomenally productive in the studio
  • I was able to finish my book

Goals:

  • I need to meditate more
  • I need to leave the studio earlier
  • I need to exercise (bike or pilates)
  • I need to be more emotionally present for O

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.

New Drugs Helping!

I have been on Atarax for a week, and it is really helping with the itching and the dysesthesia.  Atarax is a high powered antihistamine. The Dr put me on 50mg 3x per day, and that was quite a wild ride.  I pretty much was stoned and staring at the wall, or sleeping.  I cut the dose in half, and am taking it 4 to 5 times per day, and the effects are more even, and i’m less zonked.

The really good thing is that my dysesthesia symptoms are markedly reduced.  I guess the idea is that the dysesthesia is happening in the nerve endings, so if you dull the inputs via an antihistamine, it will reduce the chances of the dysesthesia.  Or something like that. Regardless, it is working.  Which is not to say that I am not having episodes.  i have had several, but whereas I was having one bad episode per day, and two to five moderate episodes, now i have one bad episode every few days, and one mild episode per day.

Strangely, though, I have been having more episodes at night; waking up from nightmares in full pins and needles.  And generally having restless nightmare filled sleep.

Dysesthesia, or knowing the words

I went to the dermatologist, who called the flaking on my eyes Eczema.  He called the lesions on my genitals something else (I forget).  He gave me a cream for both.  And told me to take Zyrtec for my itching.

And he gave me a name for my pins and needles: Dysesthesia.  He said that he has seen it in IFN cases. And he also mentioned some drug that may be useful in treating it.  But then backed off, and said I should ask my Oncologist, because it was out of his purview.  I forgot the name of the drug.

It feels really good to have a name for this mysterious side effect.  And a wikipedia page.  That helps too.

Macro photos of lesions

Here are some gorgeous macro photos of the lesions that KM took w/ his Canon D5 and a macro lens.  I needed to send them to my naturopath so he could evaluate what to do about them.  His solution: Thuja orally, and vinegar on the lesions.  I haven’t been able to locate the Thuja yet, but the vinegar seems to help.  My eyes are worse, though.  Skin falling off, and open raw skin at the folds.

lesions01

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A new day, a new side effect

So every few days my side effects change. For a while it was aches and pains, then we seemed to get that under control. Then it was the pins and needles, which are still my number one most awful side effect (bad episodes each of the last three days). But I have it more under control. For a while I couldn’t eat because of the lesions on my tongue, and for two days I even had trouble talking it was so bad. Then it was the lesions on my hands, which are easing off (i put vinegar on them). And the “sore bottom” which I soak as often as i can.

The latest are my eyes. The skin around my eyes is simply falling off. Flaking off in painful chunks. I have cuts/lesions at the creases and folds below my eyes. And crazy white flaky skin. It hurts, and putting moisturizer on it seems to make it hurt more (temporarily) and not really solve the problem. But if any of this is a pattern to be repeated, the eyes will be better by next week, and it will be something new.