Clinical Trial E5103

Hello,

 I just started this trial in November and I go in for my third treatment on Monday.  So far I have had the bloody nose mucus which is suppost to be a side effect, so I'm hoping I"m on it! Or my heat is just that dry.  lol Fingers crossed.

chinablue- I confused myself because I'm in both studies- long done with Avastin which is what this thread is about. There is news about Zometa? I am also in that trial.

Hi Jenny, I had 8 treatments of Avistan.  I did have the scratchy throat, the nosebleeds.  I used Biotene mouthwash twice a day and got the spray they have to carry with me.  Throught out the day I gave myself a shot when I felt like my throat was dry.  As for the nosebleeds, they did ease off about three weeks to a month after my last treatment. I still see trace blood sometimes when I blow my nose but no nosebleeds.  Check with your mom's onc to see if they think using a saline nasal spray will help. 

I am so sorry your Mom is going through all this.  We will keep her and you in our prayers.  We certainly know how hard it is to watch your loved one go through this as well.

Thanks Jackie and Kari for the quick responses!  I will have mom check into the nasal sprays and possibly the Biotene.  I know she has tried multiple things at the suggestion of her Onc....salt water gargles, magic mouth wash/miracle mouth rinse, cough drops, antihistamines, refluc meds, etc.  Nothing helps much.  Some times the throat pain is better and then a few days later it hurts her to swallow even liquids.  This coming Friday it will be 5 weeks since her last Avastin.  Scheduled to have testing this Thursday and f/u with her Onc on 1/14 with possible Avastin that day.  Hoping her throat has improved much by then and her Onc will decided she is better off coming out of the trial. Should be due to finish up with Arm D of her trial early March anyhow so I told her if her Onc doesn't suggest she leave the trial then mom needs to decide for herself if the sore throat is worth it for several more months.  It definately effects her daily quality of life as some days it is difficult to eat and many times she is so hoarse it is difficult to understand her.  Thanks again ladies for the input!  GREATLY appreciated

I didn't realize the hoarsness was avastin!  My voice tries to go out the day I take chemo and a little the next day it is hard to speak above my kids, especially if they are haing a drama mama spell.  I had my last A/C/ (A or placebo)  yesterday.  I start Taxol (A or placebo) in two weeks.  Yea! I think?!

I did really well with A/C and now am concerened how the Taxol will  go.  Yes, I felt icky and tired with A/C.  Yes, I have acid indigestion like crazy (now I'm reading this could be Avastin and won't end? lol) and Yes constipation is horrible, but I feel blessed compared to some of the poor women I've read that have such an awful time.  Plus, I'm probably repeating myself, but I saw my mom go through chemo in the late 80's without the wonder drugs we have now and it wasn't pretty.  I'm grateful I can drive my children to school without pulling over to throw up the entire way there.     I know the idea of placebo is to not know you have it, but I'm getting very hopeful! lol  

 

Thank you Jackie! She did mention nail problems the other day.  Along with continued constipation, which is probably my worst complaint.    I'll have the taxol weekly x12 too. 

Hi Amy, I didn't get steroids with the AC.  They didn't start those with me until the Taxol.  So you may not be either.  AC definitely makes you tired.  I am hoping your Onc gave you something for nausea? If not, ask for it.  If you have insurance and it will cover it Emend is a wonder drug for it.  Otherwise ask for compazine or such.  Hang in there! 

My onc ended up prescribing me Reglan also for nausea through A/C.  I would throw up one week after each A/C.  I hated it. I had to double up on the compazine suppository and pills at one point (per the chemo nurse).  Best of luck to you.  I checked out your blog, well done!  Hugs to all!

thanks for the good wishes, advice, and blog love!

Here's my drug info: I have Emend and Kytril to take for nausea, plus Compazine and Atavan in case of breakthrough nausea (and also the Atavan is for restlessness, I'm assuming they expect the restlessness as a result of the steroids - I only took these the first night, since then I've been a little queasy but not enough to warrant it I don't think.) Decadron is the steroid they've given me, for several days I'm supposed to take a tapering dose. My first chemo was Friday - tomorrow, tuesday, I will be down to just one pill, actually half a pill, of the Decadron.

Besides that I've been taking a Colase each day (stool softener) which I'm not convinced is enough, but I'm interested in natural alternatives if anyone has any to suggest...

The blog has been a good place for me to look in the mirror, so to speak, and assess this experience. And the feedback I'm getting is incredible. Thanks for taking a look.

Another area of concern for me is the port - I don't have one, my onc doesn't want me to have one unless absolutely necessary, because of concern of Avastin getting in the way of healing around the port's opening. Any thoughts on this?

Glad to have found this group!

I had a port put in about a week before my first chemo.  I don't mind it.  It lies fairly flat and isn't like my mom's old port.   It is healed but the scar line is still more white or silvery than I'd expect it to be now.    I'm glad you have the emend, from what I read on your blog, your insurance is better than mine.  I have to pay $60 for my two pills.   Besides Emend I took zofran plus dex for three days following.   Zofran is a great drug.  I never felt any real nausea between the two.  And after I got the prescription for prilosec I've been even better.  I ate pizza with the kids on my 'off' week.   That said, when I think of  going in for chemo my stomach turns.  I don't know why, since I was never sick. lol  It is all in my head.    I don't remember where it is now, but there was a great  thread, etc I read on getting through chemo via iv.  Like starting low as possible on your arm, you can work up, not down.  And keep your hands warm.  Don't hold your water or anything cold in your chemo hand to keep your veins as open as possible.  

My 4 a/c treatments went by fairly fast.  I finally broke down and took milk of magnesia for constipation.  Softeners didn't work for me.

 The nose thing is getting to me.  When I am up during the day I'm fine, at night my nose dries out like crazy and hurts.  I've bought some little noses saline spray to help out.  When I wake to pee for the 100th time I use it.  

I didn't have a port, my onc said my veins would recover.  I had great anxiety as my chemo visits trudged on over the fact the nurses and lab were having a tough time with my veins.  I also have a chemo chart of meds/info during A/C that I will be happy to email you.  If you like, PM me.  My clinical trials nurse sat with me and did up the chart and I typed it up.

That nose thing is very annoying.  I kept Ocean Spray saline spray by my bed and used it religiously. 

Hi Sisters

Just thought I'd post an update about my experience so far, which is quite limited. I had my first AC a week and a half ago. Today and yesterday I've had good energy, not much in the way of side effects except some discomfort inside my nose and down my throat, some lingering digestion issues that I can't quite call constipation, but I have been dry and sore, a slight aversion to food and drink (especially healther foods and water - though a squeeze of lemon helps) and a lower stamina.

The first week was hard, I felt like I was underwater, sick to my stomach, constipated, inflamed and sore from the roof of my mouth and and inside my nose all the way down my digestive tract. Then in the last few days I had a heachache all day and got really tired at night. (But was active during the day). My white blood cell count was very low, platelets were also low...

I hate that I have to do this again... and again... and again... But you all know what I mean.

Amy

PS more about my experience here

The four a/c really did fly by for me.   I hope it does for you too Amy.

Breaking news: more evidence against use of Avastin with chemo - especially taxanes and drugs containing platinum. More info here

what do you think?

Hello Everyone.  Wow - it has been a long time.  Seems I have not been on this board since July 30th.  Truthfully, I did not even remember that I use to post on E5103 - must be chemo brain.  I have been over on the Triple Negative board since.  I see a few of you on this site are over there also.  I am sorry I forgot about all of you.  I will try to read and catch up on what has been going on with everyone. 

I am fine.  Had last radiation on Dec 16th.  I am done with all treatments.  I go for my 1 year mamo this month or next and a pap.  I see the onc and the radiologist this month for follow ups.

I feel great.  Still tired a lot of the times but only one SE hanging around - my feet.  They hurt a lot but I also have a corn on my little toe.  So, lasting SEs for me are tiredness and sore feet.  My hair is grown back - ALL GREY! Yuck  It is still very thin and feels like petting a baby kitten.  Once it thickens up a little I am going to color it.  I debated that until one day I looked in the mirror and thought I saw my mother looking back at me.  I loved her but I don't want to be her.

Anyway - thanks for letting me say hi after all this time, I truly forgot that I use to post here.