2005 ROCK-TOBER CHEMO GIRLS

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We have a friend who just died of Non-Hodgkins Lymphoma. He was 42. He left a wife and 2 girls, 6 and 3. Before he died he was hoping that his bone marrow transplant would give him a few more years. He just wanted to see his girls grow.

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I'm so sorry for your friend--especially since he was so young and with young children. My dad was 78 and had lived for 5 years after diagnosis. He was diagnosed early during a routine prostate test. I had heard that there was a new treatment coming out when my dad died, but I guess your friend illustrates that new treatments, sadly, don't work for everyone.

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I am thankful for every day I am able to help my 10 year old with his homework. When he talks to me nowadays I really listen. I even put my glasses on so I can see his long lashes and the other details on his face. As I drive him to school I make sure the radio is off. Last night he said, "I'm so lucky to have a Mom like you."

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My 7 year old is what keep me going and wanting to fight to live. I am an older parent (50) and just want to be there for my daughter as she grows up.

Jane

interesting article on integrating cancer into thinking of who you are: http://www.mamm.com/highlight2.php

I agree Debbie the survivor movie was very moving and also made me cry. I have also saved it in my favorites.

Amy, your article on Cancer and stress was very good too.....

Mary, I am also sorry to hear about your brother and your father.....No family should have to go through so much.....Don't you worry, you are going to be just fine, you are going to get through this......Graycie

Well ladies, someone somewhere is looking after me. Today i managed to write my BMW off - skidded on some mud on a country road, side swiped both embankments before roling onto the roof and sliding 40 yards. A couple in the following car had to help me out as was stuck upside down and called for paramedics etc. Rather spectacular - 2 police cars, one ambulance, one paramedic car and 3 fire engines!
The outcome? A hole in my coat, a graze on my bald head and 6 pints of milk and 4 yoghurts lost ( just been shopping!)
Car is wrecked, every panel gone, no glass left and roof squashed, wheels buckled etc.
Am i indestructable? Lets d~~~ well hope so!
Debbie

holy cow, debbie! i'm so glad you're okay!!!!

October Chemo Girls...I'm so thankful for this forum! Thanks again for listening.
Laura (GTO)

Had my period start yesterday, thanks for dragging me through PMS this week. Feel much better and more positive today.

How's the tax/taxotere going, doesn't sound too bad so far.

Debbie you must be really stiff and sore from your MVA. Hope you get a spanking new red BMW out of it.

Fists up!

Amy,
I have the same lower back...pulsating, pounding, pressure pains. I asked my Onc. about it and he said it was his opinion that it's more "muscular" and not related to the chemo. Don't quite know what to think about his response. I think it may be attributed to my very low RBC's - so low, just today I had my 2nd. shot of Aranesp to boost them. How have your RBC's been? High, low or norm.? Maybe this can explain it. And, of course, I worry about mets too. How can any of us not?
ALSO, all along I have wanted to tell you that I feel so bad that you are dealing with this at such a young age. I look back to when I was 29 (I'm 45) and remember graduating from Art School and "kicking ass" in a creative capacity in the Advertising Agency world. My biggest fear was not coming up with an award-winning ad campaign for a major fortune 500 company. I felt immortal and unbelievably care-free and never thought about or worried about a life-altering health/medical issue. I don't know that I would have had your strength and maturity at that time in my life. You have done a great job at not only educating yourself about this disease, but taking the time to help others here on this forum. Again, you're too young to have to deal with this. You are much younger than most of us, but you have to deal with the same fears, frustrations and doubts as most of us, older than you. Try to think of your youth as a physically positive aspect of this incredibly trying time.
If I had to identify a "safe place" in my body, I would have say it's my heart. This is where I feel the love, compassion and concern of everyone around me. And no matter how "crappy" I feel physically, my heart never hurts, it just reminds me of those I love and those that love me. Again, I feel bad that you have to deal with this at your age. Remain tough and hang in there.
Laura (GTO)

Laura I shared this on the Taxol thread with AKE and it may help you too:

"AKE, yes. I had and continue to have those spasms on the 7th, 8th and 9th day after all my treatments. AC AND TAXOL!

If you are on dose dense it could be due to the growth factor Neupogen or Neulasta. That is what they think mine were caused by. Occasionally i would feel it in my esophagus or my neck too.

I had this so bad one session I thought i was having a seizure and i could not walk. I had to go to the ER. No one knew what it was. Not even the "onc on call" that night.

The only thing that worked for me to stop them in the ER, was IV valium and vicoden. They took blood tests and everything was normal.

When I went home from the ER, they gave me a large amount of Vicoden and Valium. When they are bad I take 10 MG valium and a 500 mg vicoden and lay on a warm electric pad. They go away then.

When they seem mild, I take 5 mg of valium without the vicoden and it gets rid of them. Luckily they seem to only last 1, 2, or 3 days out of each session at most.

The onc I saw today before treatment says that when I recieve my last Taxol, on Dec 28th, they will not be giving me any growth factor shots, Neupogen, to help my WBC so I do not get that side effect. Since there is no need to artificially "jack my WBC count up" for another TAXOL since this one is the last one. My body will then hopefully bounce back on its own that last session.

Also Kaiser health plan will save money by not giving me the growth factor since for the 7 shots, it is over 1200 dollars for each "two week" chemo sessions. 8400 dollars for that drug alone so far with my 7 chemo dose dense sessions! Lucky I have insurance I only need to pay a $200.00 co pay every couple months for that. most everything else is covered.

AKE RESPONDED:

thanks...i think it's the neupogen too because it happens always at the end of my shot cycle. whew!

i underestand what you mean about insurance...i loathe them. why don't they understand wbc counts and the need for these shots???

-amy

bUBBLES AGAIN:

MY opinion is that you and I are luckily so very healthty that they end up giving us "too much" Neupogen. It builds up in our system causing the problem. The reason i say this is they gave me the "usual HIGH amount" of Neupogen at the very first AC. That is when i landed in hosp with the worst spasms. My WBC was way too high.

The second AC session, they lowered the dose since my WBC was too high! I had less spasms that time and they were not as painful. Valium got rid of them.

The Taxol sessions started and i asked the onc to lower the Neupogen by 1/3rd and she did since with Taxol you dont need as much WBC support.

So far i still get the spasms but not as often, not as many days, and one small valium usually does the trick and relaxes my muscles enough to eliminate them.

Get your onc to get you some Valium and Vicoden STAT!

Your muscles need to be relaxed. I am sure these spasms are not good for us. And we do not need to put up with them either! Good luck my friends!

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Serendipity ,watching someone you love die of cancer is so hard. My 26 yo brother also died of non-hodgkins lymphoma.He never had a remission, just round after round of chemo. He wasted to nothing and ended up on a respirator for his final 2 weeks. This was 16 years ago but still fresh in my head.

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Hi Mary-Anne,
I'm so sorry about your brother. It is difficult to watch someone you love die of cancer--but it must be especially so in someone so young. Thank you for sharing your experience with me, and for your sympathy.
Take care, Jane

paula...i like your new picture...you really really look great

Paula
I love your pic too. I can't seem to make my pic small enough for the web site to accept .Any tech people know how to do this?
We had our second winter storm. The snow is so beautiful and fresh. I had four mourning doves at the bird feeder this am. What a sight.
Kids have day offb/c storm. Music is blaring and already made fudge and candy this am. Life is good.
Amy, agree with Laura, this must double suck for you folks under 40. I mean I feel too young but you guys really are. This whole mess will surely change our lives forever but Some of it may be good change we will have to wait and see.
Amy your pic is lovely too. You should feel blessed that your hubby is with you through this. I am glad your feet feel safe, it is a start, try moving uop to your ankes next. Maybe sooon it will reach your knees.
Fists up!

Glad to hear that Amy. My back is bothering me too now. I got my Neulasta shot yesterday. Did she say how long it will last.......I feel like I have the flu..Kind of nauseous too..This is not good....

Well, I had my second Taxol this morning. It was basically three hours of boredom. Now we get to wait and see what side effects I'll get *this* time. <g> Last time, my joints started hurting late Saturday night and it lasted into Monday. I'm going to try ibuprofin this time but won't be afraid to take the Percoset if needed.

We'll see how my fingertips do this time. I had numbness and tingling for more than a week after my first Taxol. But it decreased steadily over time and was only a nuisance for a day or two. I felt really good after the joint pain subsided, so I have high hopes for this round. <grin>

Hang in there, everyone. I'll post when/if the side effects appear. (I feel like a guy on the bomb squad, saying everything out loud so his co-workers will benefit from the knowledge even if he personally gets blown up!) hahahahaha!

ladies,

here is the website to resize you pics to fit:
www dot onlineimageresize dot com
or this one:
www dot resize2mail dot com

Amy, Mary-Anne, thanks! Even at home by myself i cant bear the sight of my bald head, so i am getting to be quite an expert at covering it. I have acquired a collection of head gear by now... what i am going to do with it later??