OFF AVASTIN for now :(

[Sheila]

After my visit to the oncologist yesterday, I was taken off Avastin for an undetermined amount of time...I seem to be having bleeding problems with it...nosebleeds to the tune of 12-15 a day, gums bleeding, and then of course the high B/P which I am now on medicine for. Being off it will also allow me to get some dental work done in a couple weeks (my onc. wants me off it a month before). So for now, it will just be Taxol and Herceptin...I think I am beginning to hold a record at my chemo center...which is good and bad...it means I'm still here, but it does get old. I have been a constant chemo center patient for 4 years now....there is a big part of me that wants a normal life back, but I know that is not to be. Yesterday was #7 of 12 on the Taxol....I thought only 5 more to go, but the onc. said I may stay on it longer. I am dissapointed that I have put on 9# from the Decadron IV that I get each week....even the Dr. said I was "puffy"...I guess that would be a nice word for plump??? Does everyone gain on this stuff, and does the weight gain continue while you are on it....and most important, does it leave after? Probably trivial questions compared to some on this board, I guess I am just having a chemo downer day. Thanks for letting me vent.

[Mary Anne in TX]

Gee'z Sheila....you've earned tons of hours of venting time!!! 4 years! I'm creeping up on 2 years and that seems long! I'm glad you got off the Avastin to relieve the bleeding problems. Must have been awful!
I'll be thinking good positive thoughts for you as you travel the Taxol & herceptin road!
I was "puffy" the whole time on chemo (all kinds). I'm not sure about all the other meds, but everything we take seems to have pluses and minuses! The puffies went away when I just take herceptin....which I hope I stay on forever!!!!
Much love and hoping you have a wonderfully blessed day!
ma

[LAURIE]

Hope that you enjoy days of bloody nose free days. The Taxol I remember cannot be any fun. I had some bloody nose (more crusty bloody) on taxol. I gained 15 pounds while on chemo and lost it, when I got off the steroids. What I hated more was that my face broke out from the steroids. It was so bad that I did not even want to go out in the public. I hope that your body enjoys being off avastin, and I am sure the nurses would miss you if you were not there for treatment. I just recently switched to a triple dose of herceptin and I swear they are starting to forget my name already.

[Mary Jo]

Oh Dear Sheila,

You vent away sweetheart. I can't offer anything to your post as I haven't been where you are, BUT, I can offer you a HUGE CYBER HUG and prayers for God's Peace and Love to HOLD YOU CLOSE.

Love you "sister"

Mary Jo

[kareneg]

Dear Sheila,

I know how you feel I have been on constint chemo for six years now. I forgot what a normal life is lol. I did gain weight with the decadron too but I am sure that will go away once you stop. I am sorry about the Avastin but use this time to get your strenght up. You are in my thoughts and prayers all the time.

[chrisy]

Sheila, sorry this has given you so many problems! I remember always having bloody nose, gums, etc. with Taxol, adding the Avastin to this was just too much I guess. But as you know, Taxol with Herceptin is pretty potent stuff and maybe the Avastin you have had so far will help anyway. And lucky you, now you get to have that dental work!

Don't even go there with the puffy! I'm at a lifetime puffymax and was seriously disappointed when I didn't lose some of it switching to Tykerb.

And puffy or not, you're still BEAUTIFUL! Go for the record dear - make them have to give you your own gold plated chair. Plus a crown since you are queen of the chemo center.

Take care, friend!
Chris

[Donna]

Hi Sheila,

I read your post and it just made me heave a sigh, I guess in frustration for all you are going through. 4 years???????? I would so like to be there just to give you a huge hug. Better yet, let's get a bunch of us together and go to some great spa and rejuvenate and replenish for a couple of days.

I know my 4 labs are good company for me when I am down, as I am sure your labs are for you - but HEY! sometimes we need more!

Maybe this little gap in time away from Avastin will shore you up and be just what you need! I really hope it is!

My Love to you, Donna

[StephN]

That is how I would look at it. Plus I can't imagine SO many nose bleeds, etc. With Taxol & Navelbine I had them every once in a while - would just be sitting down and feel the warm sensation of the blood starting to run. Did not know which drug to blame it on as I had the two. And I stopped them both at the same time. My gums bled little as I used the Biotene toothpaste AND mouthwash and took Glucosamine, which will help your gums.

My friend who took Avastin with Abraxane had the blood pressure problems as well; it has taken the better part of a year to get it under pretty good control with much lower med dose.

Taxol is also hard on the peripheral nerves so I hope your feet are doing better than on the Xeloda.

You may want to switch to one of the other new drugs like Sutent if it is avail.

You need to stop at a costume/display/party store and get yourself some big plastic sparkly rings and a crown to wear to your next treatment. Oh, and don't forget a scepter! Also make yourself a gaudy velvet cape. http://her2support.org/vbulletin/images/icons/icon7.gif

P.S. You KNOW you have been going to the treatment center too long when the gal who empties the garbage, etc. tells you she has not seen you lately! True story folks.

[Sheila]

Steph
You are sooo right....yesterday, I guess I was in a daze, and when I signed in for my blood draw...I forgot to put my last name...no problem, they knew who it was...as do the girls who do the vitals, as do the pharmacy techs, the cleaning ladies...my new friends...all of them at the chemo center.....I must admit, I have met some amazing people there over the years, each one has been an enrichment.

[atdec05]

Hi Sheila,

I hope you feel better off the Avastin and the Taxol & Herceptin do their job. I had bloody noses on Herceptin, but only a couple of times a day, and not every day.

Are you just getting decadron via IV or also taking pills? I'm doing weekly TH (also completed 7), and just get it via IV. I had heard about weight gain, but have not had any. Maybe because I've had intermittent GI problems.

My doctor has mentioned 16 weekly treatments. Is your doctor saying TH indefinitely or recommending a number?

take care, Anna

[tousled1]

Sheila,

Sounds like the Avastin is really playing havoc with your system. Maybe it's a good thing you get a break from it so that you can get the dental work done. I'm on Taxol and get the Decadron IV before my treatment. I've gained weight but I don't have the moon face like I did when I was on the Taxatore. With the Taxatore I was getting the Decadron pills the day before the day of and the day after. Now with the Taxol I just get the IV bag of Decadron. I'm gaining all my weight right around the middle -- spare tire if you know what I mean. I figure it's a small price to pay if the drug is going to work. I'm not happy with the weight gain I gained 2 pounds in a week! At this rate I'll be the fat lady in the circus in no time. Hang in there I think it will get better.

[Roz]

Hi Sheila,
I'm sorry to hear about the nose bleeds,hopefully you will get a rest from them now. I have finished my Taxol /Herceptin combo 5 weeks ago. Now only big H and a new A.I., Aramosin. I put on a couple of kilos from mid March to early July and I haven't even begun to look like shifting them. Normally I swim and lose kilos doing that, but stopped with the chemo. Now we have a couple of very virulent strains of flu circulating this winter and I am not ready to go back to swimming because of this. I was secretly hoping that the next combo, Tykerb/Xeloda might shift it, but no, not according to Chris! Anyhow, there is more of me to love I suppose.
Take Care
Roz

[sassy]

Sheila,

Hopefully a break will be just what you need to get things on an even keel, give you a chance to get the dental work etc. So sorry you are having difficulties. Wishing you strength and keeping you in my thoughts and prayers.

As for weight gain, I've finally adoped the attitude that I often feel as if there is not enough of me to go around...so I'm making more!
________
LIVE SEX (http://livesexwebshows.com/)

[Shell]

Sheila-

The symptoms usually do abate once you are off the treatment - I was on avastin and didn't experience the level of bleeding, but there was certainly some...

As for the decadron, that weight gain would also decrease once you are off it. You are getting taxol, while I am getting abraxane, but I am getting decadron as well as a pre-med. I've been craving sugary food (FRUIT LOOPS rule!), and other sweet foods, I'm trying to watch my weight, but I know some of it treatment-effected, and there is only so much I can do about it.

I hope you feel better...

Kind regards,

[DonnaD]

Hi Sheila,
I am so sorry to hear about being taken off Avastin. I know you were having problems with the blood pressure. What a way to have your dental work done!

You are allowed to have a chemo downer day. But I know you will be supporting all of us soon! You continue to be in my daily prayers. I too know so many in the treatment room the radiation center and the list goes on.

We are camping at Starved Rock until Sunday. Just looked at the map and we are not that far from Morris.
Hmmm.... We check messages daily but do not have a WiFi connection at the camp site.

Take care dear friend.
Donna