Chemo June 2010

Has anyone had their chemo dosage reduced?  What does it mean for long term?

My onc says he may reduce my Docetaxel dosage. I am having such a tough time with side effects. I don't want to risk problems later on. Should I just suffer through?

Happy Labour Day Weekend...

Good morning!  Just wanted to tell you that Mom is HOME!  They discharged her last evening at 6:30. She is still pretty weak, as is to be expected, but she's happy to be home and eager to get her life back, too. They never did get the diarrhea totally under control and she is still on lomotil tid, as well as 30 mgs of prednisone. That's a whopping dose of steroids, especially for such a small person.  But the colon in still inflamed and they are trying to get that resolved.  I drafted a very specific list for her of what she can and cannot eat over this short haul, and will work with her GI doc to reintroduce other foods over time. Last night I had to make her a spreadsheet for all the various meds they have her on, since they've added a couple with odd timing requirements and taken others away from her usual routine.  It got pretty complicated, even for me. Imagine being almost 89, weary from the entire ordeal, and being shipped off to home without specific and clear instructions on diet and meds!  Nursing care was great...rest of it was just below bad. That dietitian was just out of her element when faced with more than two dietary restrictions...for dinner last evening they sent up a lovely piece of salmon with a topping of fresh diced tomato, onions, and capers!  SSSSSCCCCCRRRREEEAAAAMMMM!  At least Mom was smart enough to scrape off that stuff and just eat the fish. But making patients virtually fend for themselves against the dietary department makes no sense. Wish I had a dietary degree...I know I could teach them a thing or two, and maybe prevent this type of screw-up from happening to other patients. (Ha, Ha...spell-check is so used to my screams, it didn't even question the long one above!)

Anyway, she is home and now that I am done with chemo and past the worst SE (I hope) of the last round, I'll be able to help her some. I thank each and every one of you for indulging me over this last 8 or so days when I was just terrified for her...and for me. Thank you for your prayers, good wishes and patience. And Mom thanks you, too.   Bon

Bon - so glad that your mom is home and things are looking manageable

I went to get a private 2nd opinion from an oncologist yesterday - she's the dept manager of the hospital i wish i had gone to for tx, but it all happened so fast that I ended up just going where I was sent and not researching itat all. Anyway, I wasn't happy with my onc, so went privately to this other onc just to see what she had to say - she gave me a lot of good info, and also convinced me that I am getting the right tx where I am, even if i don't like my onc, so i will stay where i am till end of tx, and then transfer to the other hospital for rads.

Here are some of the useful things she told me that you may or may not know:

1. I'm BRCA positive, and I assumed that this meant I should have a total mx to prevent reoccurence. She told me that the difference in reoccurence (in the breast) between BRCA pos and neg patients is only 3%, so this is not a reason to do a full mx.She said that my main worry is that my lymph nodes remain positive, and that it will spread, not that it will reoccur in a breast in the future.

2. She recommended that because i am BRCA positive, I have an oopherectomy asap after chemo, because ovarian cancer is extremely hard to detect until it is too late.

3. She told me about a study that was done giving Zomera/Zometa to BC patients with lymph node involvement - they got it once every 6 months, and the rate of reoccurence/spread was half of the patients whio didn't get the Zomera/Zometa.

4.  She told me to get my vit D levels checked and upped to normal range if needed.

5. She recommended that I do a test (mouth swab) to see if I have the gene/enzyme that metabolizes tamoxifen, because there is no point taking it if I don't.

6. She said that even if you are post-menopausal (as I will be if I have the ooph), she still recommends 5 yrs of tamoxifen and then 5 yrs of AIs. I thought that tamoxifen is only for pre-menopause, but she said it works also for post, and what is impt is to have as many yrs as possible of hormonal tx, which means first tamox and then AI.

So I hope this info is useful to some of you - it's definitely given me things to think about :-)

Thanks for the info Bon and Mimi

I will be asking questions about reducing the dosage when I see the onc next week. I don't think I can do this again. The bone pain is somewhat better, but weakness, diarrhea, twitching eye, neuropathy, bleeding, funky mouth. fungal infection and other stuff continues over a week after infusion. I just generally feel so awful.

Bon: my husband gives me the Neulasta shot 24 hours after each infusion (FEC and Docetaxel). A nurse at the hospital "trained" him to do it so that I don't have to go back in following my infusions. Neulasta gave me some bone pain in my pelvis and lower back, but no big effect. I haven't had problems with blood cell count.. so far.

I don't want to wreck the potential for long term positive results, and I am trying to be brave and just roll with the treatment, but I am so sick of feeling sick.

Northerngirl and mimi--> sorry both of you have suffered so much!  Yes, definitely ask about a reduction!  Your side effects are way too severe. I doubt a reduction wil change the rate of recurrance.  It seems they usually give more than is needed "just in case".

Bon-->  Good news about your mom!  She's blessed to have you looking out for her-can't imagine what older people do when they don't have anyone!  My mom lives with me, and so far can mostly take of herself, but I'm sure a time will come when she'll need me to "have her back" like you are doing with your mom.

Hang in there Chey!  You're getting closer to the end!  You can do this!

Boy, we here in MN have gone from super hot and muggy to chilly!  I love the Fall, crisp air, but the back of my neck sure is cold with no hair!  And I have to keep a scarf or hat on even in the house to stay warm!  I'd probably look a little strange if I started wearing a winter scarf around my neck...

Latte...so happy you went for a 2nd opinion and are feeling better about the treatment you're receiving now. Changing docs when your treatment changes seems like the smart thing to do. It's really so difficult to keep positive if you don't have confidence in your physician.

On the funny side...I have been forgetting about being bald when I'm home and don't wear the dang wig. In the past week I've gone to the door looking like Uncle Fester with hoop earrings when a high school kid came to ask for a donation, when the substitute mailman brought a package that wouldn't fit in the box and when two Mormon ladies wanted to discuss religion. All did a double take and THAT was when I realized I was sans hair. I do go out to get the newspaper each morning without the wig or a hat and even sometimes saunter to the mailbox without a head covering. I do still try to see if there is anyone outside in their yard or in the cul de sac...I don't want to scare the young kids who live a few houses away! Guess I'm getting braver now, or just more used to the idea that it will eventually grow back and that this isn't anything to be ashamed of. Heck, let them stare. I reallly don't care anymore. YIPPEE! How liberating!

Bon, Latte and all you other beautiful, bald, forgetful ladies, your attitude rocks!  If "forgetting" your scarf or wig bothers you, you can try my method of not forgetting things.  I actually hang my purse, totebag, shopping bag on my front door knob so I don't forget things.  These days I have post-its and prescriptions there too!  No doorknob without a scarf!  A new interior design look!

Okay, girlfriends have to share good things.  I think I finally cracked the chemo constipation secret code (only took me 15 weeks)!  My oldest friend came to visit and brought me HER constipation supplement.  Welcome to cancer-land, what happened to flowers?  It has made ALL the difference. It is Yerba Prima psyllium husk veg caps 625 mg. each. It comes in capsules so I don't have to drink that gloppy, yucky slop.  The key is to take it regularly.  I take it 3 X a day with meals and water.   I also have been eating about 3 Fuji apples with peels each day.  Voila!  I'm a happy camper!

Bon, I laughed out loud at your stories of answering the door sans hair. Wow, its great to laugh, and we can all identify with your stories.

Hey ladies

Woke up this morning feeling human... yay! Gosh I hope the pain is done with. Had a nasty nose bleed last night. I feel so weak.

RS711... I haven't been able to taste things in so long! Even water tastes greasy. Mind you the heartburn is so bad, I don't feel like eating much anyway... my new weight loss regime?!

DMom:  Re constipation:  odd how this chemo stuff hits us in different ways. I have had diarrhea for weeks.

I make homemade granola bars for my family. They are loaded with great things like amaranth, quinoa and different seeds. They really keep things moving around here... for those who need that kind of thing!

Hello girls!!!!! Been away have not checked in for a few days...  My best friend who was helping me through my BC went to Dr.. well to make a long story short.  She has it too:(.. We were freaking out needless to say...We had a good cry and laugh (as if there is something to laugh about) but hey we had to cause we were all cryed out... well want bore you all with all details.. but I did tell her I was not contagious...

Want to thank all for telling me the experience they had on AC.  

TMarina- Went and got different kinds of drinks to have on hand, and told DH to make sure I have ice while doing treatment..  talked to Dentist and got some kind of rinse for people taking chemo, or so she said... 

kittycat- I am not a water drinker myself soooo I got lime juice to put in it helps a lot...

Latte- I was afraid AC would not me on my tail... So tired of feeling tired... know what I mean...

Oh and thanks for telling me about constipation also.. got it covered...Why don't the Dr's tell you all this stuff?  If they did I did not hear it.. LOL  Chemo brain has set in ( for life I think) 

Oh and Cheyenna I too have the tingling in fingers and toes.. and bad taste in mouth.

Latte- Chemo again    meant to say I thought AC would knock me on my tail...Oh well...Sorry about the type O

Does anyone else have small sores that just don't heal? About 12 days ago I got bitten by a mosquito when I was out walking the dogs. I saw it land and just swatted too late. But I know that's what the resulting sore was from. Then about 8 days ago I picked at some little thing on my face...Yes, I know, your should never pick anything, especially something on your face... but I have pretty good skin and this little 'thing' was bothering me. So now I have two scabs, one on my leg and one on my cheek. Yuck!  And they don't seem to be getting any better. I've tried hydrocortisone cream but it doesn't appear to be having any effect. I'm thinking that this is just another issue with the chemo...it needs to stop killing new cells and clear my system before any new cells can lay claim. Same goes for my stomach and colon...am hoping that all my GI issues resolve in a few weeks once most of the chemo gone. Since I had that Taxotere reaction 12 days after the 2nd tx I'm convinced that this stuff lasts in your system a lot longer than I was originally told. 

Bon-I think your thoughts about slow healing are on the money.  If in doubt, blame it on chemo!  I usually heal in a blink.  These days, any little scratch, needle stick etc.  seems to take weeks.  I even have a bruise on my arm that has been there probably 10 days.  Dang chemo!  I am trying to be extra careful as my white counts are so low right now.  Also, as you know, chemo is cumulative, so a lot of the cells, proteins, amino acids etc...that help with healing are getting slammed and can't build back up.  Like you, I can't wait to get my "system" back up and running right!

Kaycee-Wow, they are putting you throught the wringer!  I hope and pray you get good news on your pathology.  As you have been on so many antibiotics, you might want to take some acidophilus to help re-establish the good flora in your body.  Antibiotics kill it all and you can end up with other fun stuff like digestive problems and yeast infections.  Praying for good news for you this week.

Anyone else experiencing extra sensitive teeth?  I think my gums are receding, D&$#+mn chemo!

me too, my teeth hurt and are very sensitive,

kaycee, im so sorry what you r going through, i pray all is well, ill be thinking of you.

youd think we are all going through enough just being told "its Cancer" why so much outher stuff has to be thrown on top, i dont understand, some of us have gone through more in one week,emotionally,mentally,and physically, then someone else in a life time! it seems so unfair!!! I hate seeing what it does to our sisters here!!!! I hate cancer!!!! it sucks!!! I HATE IT, I HATE IT, I HATE IT!!!!!!!

love Chey

Bon- I use Witch Hazel for my face cause of the steroids I have acne.  I use it about 4-5 times a day.  Hope this helps...  Good luck and God Bless.. us All