Dealing with Gene Therapy Drug Reactions Category

Monday, August 17th, 2009

Exhaustion

I am So Exhausted.  So Freaking Exhausted

Seems everything I need to do is a effort… Every.Simple.Thing.

Simply waking up and getting going in the morning just wears me out.  By the time I take my shower, put on my make-up, get dressed, feed the cat and dogs, take all my pills and eat breakfast, I am ready to collapse.  Walking down the stairs wears me out.

I just want someone to hold me and tell me it’s gonna be alright… But that’s not gonna happen anytime soon.

I am physically, emotionally and spiritually exhausted.

The physical part is due to the drugs that I am taking to fight this cancer, this beast cancer.  The emotional and spiritual part… well, that’s due to everything else associated with the beast.

The drugs specifically are Tarceva, Zolinza, Xeloda and Sodium Phenylbutrate.  Ok, so ALL of the drugs that I’m taking daily have “weakness”, “tired” as a side effect.  Lovely.

A lot of my exhaustion is due to the Sodium Phenylbutrate cuz of the depletion of the Glutamine in my body.  While Glutamine deficiency is rare, when it’s being purposefully depleted from your body the results are very much felt.  Plus the fact that I’m supposed to be following a low protein diet (which I’m doing my best at) does not help with alleviating the symptoms…

I am just overwhelmingly exhausted.

But I have to keep going.

Occasionally I just want to chow down on a big, thick, rare steak.
Continuously I just want to crawl back in bed.
  ~sigh~

Tags:

Sunday, August 16th, 2009

Reaction – Zometa #3

While #1 was a “Bitch“, and #2 was more like simple achiness, Zometa Infusion #3 was a comparative “walk in the park”…  Nothing more than general fatigue and some minor minor aches.  I was actually able to get out yesterday (Saturday) and run some errands with Mom, though it was really too much and I came home Totally Exhausted after a couple of hours.

But… YAY!

Let’s hope it’s similarly “easy” each time…

YAY!

Tags:

Monday, July 27th, 2009

Dealing with Wonky Drug Reactions

The latest and “greatest” reactions…

* Headache, dizziness and balance issues
* Chronic fatigue AND insomnia
* Itchy rash on chest, neck and ears still prevalent… also on shoulders and lower back now
* Sores on tongue and cheek diminished
* Inside of lower lip feels like it’s been burned, certain something major is developing there, something to look forward to…
* Acne on face is spreading like crazy – I never had it this bad as a teenager
* Muscle aches
* Bone pain – especially in the lower back, where the metastsis was indicated
* My “Old Friends” Diarrhea and Gas

Boy-o-Boy… just the girl you’d wanna bring home to Mom… ~sigh~

Saturday, July 18th, 2009

Mouth Sores – July 2009

So… Thanks to the Tarceva and Xeloda I’m taking, the mouth sores have started… Just one so far. Its on the inside of my left cheek. It’s not big, but it hurts… I wonder how bad they will get once they really get going.

Tags: ,

Friday, July 17th, 2009

Acne

Thanks to the Tarceva that I am taking, I am dealing with acne.  Lovely.

All the years of pampering and babying my oily “problem skin”, all wasted… to have to deal with This now.

It’s not That bad yet, but I’m told that it will get worse before it gets any better.  And I can feel the underlying lumpiness when I touch my face.  Lumpiness and bumpiness that was not there a couple weeks ago. ~sigh~

I’m told to “let it run it’s course”. But then “They” don’t have to wear this face. I’m trying some natural things – a honey masque seems to “quiet” it down a bit…

Also, there are tiny blood spots that just appear for no apparent reason… Ugh.

Tags:

Thursday, July 16th, 2009

Tongue Sores

Thanks to the Tarceva and Xeloda that I am taking, I am dealing with tongue sores – mostly the tastebud ulcer type. Nasty, irritating things that become quite painful in clusters. Enough of them and it feels like the tip of the tongue has been burned. They “only” last 3-4 days each, but they come and go and then others take their place…

Some though, are the “undergrounders”… They manifest themselves as “pea” sized, tender and swollen areas with the soreness on the inside of the tongue.

I’m avoiding alcohol-based mouthwash and rinsing with apple cider vinegar, and warm salt water, but still have to deal with them…

I’ll suffer the burn for a margarita (or two) when I go out with Christine & Rob for Mexican food, though – tequila Has to be good for Something medicinal!  Ok, and maybe an occasional glass of wine when playing boardgames…

I know this sounds gross, but whenever I’d get one ~before~, I’d just nip it off with a nail clipper.  Better that one moment of pain than the couple days of irritation.  But now, they are too many, and too deep to do so…

I’m told that mouth sores will be upcoming…

~sigh~

Tags: ,

Tuesday, July 14th, 2009

Mama Mia!

I used Sam’s Member’s Mark Extra Virgin Olive Oil to rub on my skin to help with the dryness.  Thanks to Joy for that suggestion!

I bet I smell good to some Mediterranean guy  *LOL*

Seriously, it felt good, though I think next time I won’t use as much.  Gotta remember a little goes a Long way!!

Tags: ,

Monday, July 13th, 2009

Finger and Toe Nails

Finally got around to posting the photos of my finger and toe nail beds.

One result of the chemo infusions was that my finger and toe nails turned dark - looked like they were hit with a hammer.

Now that some time has passed since the chemo, the nails are no longer as dark as they were before, but they are very dry, and several have developed crack lines that run from the cuticle to the tip of the nail.  I’m not looking forward to when those lines give out…

Also, my 2 large toe nails are separating from the nail bed.  I guess it’s a good thing I stopped painting them when all this started cuz I’ll probably loose them both… I don’t think nails “spontaneously re-attach”  hahaha  :-|

For some reason, both of my pinkie toes are bright red… it must have something to do with the Hand-Foot Syndrome.  Fun with cancer.

There’s really nothing I can do, though I am soaking my feet in cool water with Epson salts, just cuz it feels nice.  And I’m trying to keep ample lotion on them.

I’d LOVE to go to get a pedicure, but I’m not sure if it would be the best idea to stick my feet in a public-used facility, regardless of sanitation, considering my situation.  They’re so ugly right now anyway, I really don’t want them “out in public”…

So I just have to sit back and watch what is happening.

It’s a Nuclear Reaction Party and my Body is the Guest of Honor.


Tags: , , ,

Saturday, July 11th, 2009

Skin Rash

Thanks to the Tarceva, Xeloda and Zolinza that I am taking, I am dealing with an itchy rash for the last week or so.  Mainly on my chest and neck, and under and behind my ears.

It started light, goes away a bit, then comes back more intensely.

I can feel it popping up on my back.

It’s itchy…

I can’t reach my back…

I need to get a backscratcher to carry with me.


Tags: ,

Thursday, July 9th, 2009

Xeloda PAP Support

Today, at work, I got a call from Xeloda Patient Assistance Program Customer Support at Roche.

Wow… here I am, on this big company’s “hand out” list and THEY are checking on me… to see how I am doing… how I am handling the drug.

The lady was so very nice… we chatted about what I’m doing right, what I’m doing wrong, and what things I might consider changing.

Most importantly I’m taking the drug correctly (2tabs/2x daily as prescribed) and that I am aware of the common side effects and the uncommon ones to be concerned about.

She also mentioned not to eat spicy foods… uhhhhh… me?  Not eat spicy foods??  Like THAT is gonna happen?  Ok, waitaminute… lemme ask “why” before I make any foolish life threatening decisions.  So, why?  Heartburn.  Ok, I can deal with a little heartburn.  And seriously, the only heartburn I have had was when I added cayenne pepper tabs to my daily herb regime and then upped the dosage to 4/40,000 unit tabs/2x daily.  Heartburn for a few minutes after about 5 min of swallowing – relieved with drinking water.  She asked why I was taking so much cayenne, and I explained that I had read that there is evidence that capsaicin MAY affect cancer, especially to kill breast cancer cells, so I’m gonna heap that capsaicin into my body.  Go figure.

Second suggestion… forgo the greasy foods.  Well, I’m not much of a greasy food eater, never have been.  My weakness is the carbs – rice, pasta, breads, mostly gone from my diet now. So… why?  cramping.  Yep, I had kinda figured that one out for myself when we went to get Mexican food.  Probably the “greasiest” food I eat, and probably the worst pain I have had so far (on the gene therapy treatment), so now I am careful there.  But gotta have my Mexican food, my queso and extra jalapenos and my occasional margarita (or two)!  *LOL*  She said that was ok, just not in excess.

Third suggestion… go easy on the “gassy” veggies, especially raw, like broccoli and cabbage.  Ok, now she has named the 2 raw veggies I eat the most of – up to 2 cups of raw broccoli a day!  Again, why?  Cuz of the gas, silly girl.  Ok, I can relate,.  I am Major Mizz Gas. I.Am.Talking.Serious.Gas.  But it’s been shown that green vegetables in the cruciferous family — which includes cabbage, broccoli, Brussels sprouts, and cauliflower (especially raw) MAY provide Important agents (Phytochemicals) in the fight against cancer, so I will endure some uncomfortable (and sometimes embarassing) gas to keep them Majorly in my diet.

Over all, I’m doing ok and her info was very helpful, and she said she was making notes and that my input would be helpful.  Hey, at least I’m “giving back”!

I Hate having to ask for such high end assistance.  I’ve never been one to support the welfare state, even now.  I’ve pretty much always paid my own way – borrowing from my parents occasionally but not often.  This is sure Not how things were supposed to be.  For one, I Never thought Mr Sack would do me like he did and leave me high and dry to handle this alone.  But, it is what it is, and he is Most Certainly what he is.

And it is…

XELODA

How should I use this medicine?
Take this medicine by mouth with a glass of water, within 30 minutes of the end of a meal. Follow the directions on the prescription label. Take your medicine at regular intervals. Do not take it more often than directed. Do not stop taking except on your doctor’s advice.

Side effects that usually do not require medical attention (report to your doctor or health care professional if they continue or are bothersome):
•constipation
•diarrhea
•dry or itchy skin
•hair loss
•loss of appetite
•nausea
•weak or tired

Side effects that you should report to your doctor or health care professional as soon as possible:
•allergic reactions like skin rash, itching or hives, swelling of the face, lips, or tongue
•low blood counts – this medicine may decrease the number of white blood cells, red blood cells and platelets. You may be at increased risk for infections and bleeding.
•signs of infection – fever or chills, cough, sore throat, pain or difficulty passing urine
•signs of decreased platelets or bleeding – bruising, pinpoint red spots on the skin, black, tarry stools, blood in the urine
•signs of decreased red blood cells – unusually weak or tired, fainting spells, lightheadedness
•breathing problems
•changes in vision
•chest pain
•diarrhea of more than 4 bowel movements in one day or any diarrhea at night
•mouth sores
•nausea and vomiting
•pain, swelling, redness at site where injected
•pain, tingling, numbness in the hands or feet
•redness, swelling, or sores on hands or feet
•stomach pain
•vomiting
•yellow color of skin or eyes

What should I watch for while using this medicine?
Visit your doctor for checks on your progress. This drug may make you feel generally unwell. This is not uncommon, as chemotherapy can affect healthy cells as well as cancer cells. Report any side effects. Continue your course of treatment even though you feel ill unless your doctor tells you to stop.

In some cases, you may be given additional medicines to help with side effects. Follow all directions for their use.

Call your doctor or health care professional for advice if you get a fever, chills or sore throat, or other symptoms of a cold or flu. Do not treat yourself. This drug decreases your body’s ability to fight infections. Try to avoid being around people who are sick.

This medicine may increase your risk to bruise or bleed. Call your doctor or health care professional if you notice any unusual bleeding.

Be careful brushing and flossing your teeth or using a toothpick because you may get an infection or bleed more easily. If you have any dental work done, tell your dentist you are receiving this medicine.

Avoid taking products that contain aspirin, acetaminophen, ibuprofen, naproxen, or ketoprofen unless instructed by your doctor. These medicines may hide a fever.

Do not become pregnant while taking this medicine. Women should inform their doctor if they wish to become pregnant or think they might be pregnant. There is a potential for serious side effects to an unborn child. Talk to your health care professional or pharmacist for more information. Do not breast-feed an infant while taking this medicine.

Men are advised not to father a child while taking this medicine.

Where should I keep my medicine?
Keep out of the reach of children


Tags: , , , ,







  • Write your comment within 150 characters.

  • Categories
  • Recognition Wall
    • Doug Blanchard: hello, my son has brain cancer and today UCSF told...
    • Ramona: Hi there Denise, this is Amber and Joe's camping f...
    • crystal: I enjoyed hunting for stuff to sell more than sell...
    • Mare: Love ya, love ya attitude......
    • Christy: Woo hoo! That is great! And I see you DID get some...

    Powered by WordPress

    Blossom Theme by RoseCityGardens.com