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Posted

I'm pasting a post I copied from one I just did on cancergrace because I'm too lazy tonight to compose a new one:

"I had six rounds of Carbo/Taxol/Avastin and now seven additional rounds of Avastin maintenance. Once the doctors got my blood pressure under control, the primary complaint I had on the Avastin maintenance was chronic fatigue. With the last two infusions, however, I've noticed increasing chemo brain, pins and needles in my hands, naseau and gas, increased mouth blisters and now episodic lip swelling. This last infusion I had four weeks in between instead of my usual three to accomodate my vacation but the symptoms seem worse not better. I'd be interested to know if anyone else has had similar experience with Avastin as a maintenance chemo."

I can't say that I feel all that awful, it's just the combination of annoying problems is wearing me down. Also, I never know what to call my onc and complain about!

Judy in Key West

Posted

Judy -

I was on Avastin alone for 7 months. Other than high blood pressure (which, by the way has not gone away) I had no other side effects at all. But, then I have been real lucky with all the chemos Ihave been on. Maybe my body is just to stupid to know they are putting poison in it!!! :lol::lol::lol:

Wish you luck!!! ANY new side effects should probably be reported to your doctor!!

Hugs- Patti

Posted

Judy:

The only thing I could definitely attribute to Avastin was slow healing. Existing scrapes, cuts, GI irritation from previous Taxol/Carbo, etc., were slow to resolve or simply did not resolve while I was still on Avastin. In addition -- and this is sort of hard to pin down -- it seemed like I was more prone to wear and tear from ordinary daily activities. Muscle and joint strains, even minor ones that normally would have been gone in a day or two, would continue to accumulate. My shoulder range of motion slowly decreased to the point where exercises which I've done for 50 years became impossible. I was pleasantly surprised to find that within a month after stopping Avastin I was able to gradually break through that limitation and within a few months my range of motion was back to normal.

Within the past week I believe someone other than you asked about neuropathy-like pins and needles in connection with Avastin. Maybe it was on GRACE? About the mouth and lip problems, is it possible that some minor irritation (hot pizza cheese, chapped lip) has taken on a life of its own because of the slow healing effect?

Aloha,

Ned

Posted

Ned, Thanks for your reply. I remembered what you said about muscle and joint strains when I started working out with my Total Gym again. I've been taking it slow but too often feel like I'm working through the pain. Still, it feels good to be getting stronger again. I noticed I can now open the door to the RV with one hand instead of needing two :lol:

Like you, I thought I'd read a post that reported the pins and needles thing with Avastin. When Dr West said he wasn't aware of the connection, I thought I remembered wrong. The mouth problems are definitely related to what I eat but I hadn't made the connection with the slow healing process that you talked about in an earlier post. I'd already noticed that with minor scrapes and scratches.

I'm committed to seeing the Avastin through to at least the end of the year but the neuropathy thing is worrisome. I've read people who've had it and gotten over it and heard of it being long term and chronic. I hope the person we remember talking about it re Avastin reads our posts and responds.

Judy in Key West

P.S. I have another confession--did no serious reading or writing during my trip. Oh well, I had fun and that's probably exactly as it should have been.

Posted

Judy,

I'm on paraplatin/alimta/avastin every 2 weeks so I don't know what side effects to attribute to which drug.

I have recently noticed that I have great difficulty concentrating. I'm usually an avid reader but lately I can't get into a book -- not good for a librarian.

I am supposed to be developing a course to teach resume writing and online job searching but I find myself staring blankly at the computer screen.

I had something similar right after the surgery but I put that down to the amount of pain killers I was taking.

I have 2 more rounds of chemo and then a CAT scan to see what's what. I'm hoping that the chemo fog will lift after that.

Linda

Posted

Linda, I do think the chemo brain is much worse when you're going through what I refer to as the big chemos or chemo cocktails. The maintenance Avastin is considered a cake-walk in comparison but I haven't found it to be side-effect free. You should get some mental relief after you complete the big ones.

Judy in Key West

Posted

Hi Judy,

Yep, I have had the symptoms you mention. They started around the 7th month after being on Avastin and Tarceva. I have had two rounds with the combo - the 1st for a year, the second I am on now is at the 7th month.

Both rounds I started developing the brain fog. The fog feels different from the chemo brain I had after my first line chemo. I sometimes explain the fog as the world moving a little bit faster than I can think :lol: The numbness in my finger and toes seemed to increase about this same time frame too. Do you have temperature issues with your hands and feet (extremely cold/hot fluxuations) too? My doc eventually cut back on the Avastin at about 9 months which decreased the side effects for me a little. Once the Avastin was stopped the symptoms decreased.

My husband and doc like to remind me that I have been on some type of chemo/treatment almost continually for the last 4.5 years.

I haven't a clue my side effects are from the Avastin, tarceva (been on daily for 2.5 years), the taxotere, cisplastin, vp16, iressa or just getting older. I couldn't tell you if it is the original chemo brain and neuropathy coming back or new side effects from avastin but I am betting it is the avastin since it has happened twice., My hubby and doc like to remind me that I have been on some type of chemo/treatment almost continually for the last 4.5 years - who knows whats what anymore.

I have found that the symptoms get worse if I am tired so I tend to take extra time to rest when the effects are at their peak.

Wendy

Posted

Hi All~

I had neuropathy, in my hands and feet last Oct. scary, like walking on hot rocks all the time

"Ned" shared he wore big fluffy slippers, and that helped. My DR. (PMD) put me on Lyrica, worse then neuropathy!! PS by Jan. , 4 mo. after chemo& radiation the neuropathy went away

.

:lol: This "round" my onc @ MSKCC,NYC said he "could" put me on avastin. I researched it a bit and found infact it is not a chemo drug at all. It's action is , it is very effective in cutting off blood supplies to tumors, which makes them less likely to grow. I am on it now, I have only had 2 doses, and my major complaint is laryngitis, but some say that may be the taxol?

Hoping it's not my "new normal"!!!

Mary

Posted

Wendy, I hear you when you say we don't know what's what after awhile and I haven't been on chemo nearly as long as you. Still, it really helps to hear someone who experienced similar side effects even if they aren't commonly associated with a particular treatment. The pins and needles set in after about the fourth maintenance infusion. I have a real problem anyway with being always cold but I can't say particularly just hands and feet but know I've been complaining more about being cold. Odd thing is, I'm starting to have some significant sweats again too. Don't like that at all since a chemo nurse once associated those with the cancer. I'm past the menopause thing. I agree the brain fog is different, for one thing mine comes and goes more now than being constant.

Mary, I didn't even mention the hoarseness but it set in a couple of months ago. It lasted a month or so and has passed but both I and my husband noticed it come and go. I've had some feet issues but they aren't as significant as my hands, probably because my hands are already twisted with arthritis.

What a crap shoot this all is. Thank goodness we have each other to bounce thoughts and feels off of.

Judy in Key West

  • 2 weeks later...
Posted

Judy

I'm still on the paraplatin/alimta/avastin so I don't know what drug to attribute side effects to.

I have recently been plagued by horrible gas pains -- and I'm burping all the time.

The paraplatin makes everything taste funny and the only beverage I found that I can tolerate is lemonade. My onc says the combo of lemonade and avastin is causing the gas. He advises staying away from citrus as much as possible.

I guess it's always something. Time to look for anothe beverage.

Other side effects include terrible back pains the first day. Onc says many of his patients on avastin have reported a feeling of having been sucker punched. The chemo fog is still there. Could be tiredness as I've just returned to work.

My blood pressure is all over place. Last night cleaned up the table and washed the dishes. By the end it was 156/105. Sat down and read for half an hour and bp was down to 135/85. Another half hour and it was 120/70. I've been taking it regularly and it certainly rises with any exercise, then quickly returns to normal. I have hypertension anyway and take 3 bp meds. BP never went real high on the chemo; actually I was hospitalized after the first round as my bp was very low --80/50.

Anyway, I seem to be tolerating the chemo fairly well and I'll do what I have to fight off this cancer.

Linda

Posted

Linda, Judy~

This is a crap shoot! My onc. yesterday is leaning to laryngitis's is due to post nasal drip! Go figure . Zyrtec does help, the next 3 days I am on claritin to reduce bone pain from neulasta and that does help.

The taste thing OMG, I'm in for 3 days of nothing tastes the same which I attribute to taxol?

Will be posting my new , CEA 3#s. 152 down from 395 6 weeks ago! 3 TX's to go.

Way to go CTCA!

Mary

Posted

Mary, I saw that mentioned on chat last night, CEA numbers. Can't believe I was dx'd over nine months ago and don't know what they are????

Judy in Key West

Posted
"jaminkw" Mary, I saw that mentioned on chat last night, CEA numbers. Can't believe I was dx'd over nine months ago and don't know what they are????

Judy, don't feel like the Long Ranger, 'cause I don't know either! I asked my onc about it a couple of appointments ago, and he said he doesn't use them for treatment decisions and doesn't order them routinely. He and Dr. West seem to be in sync on this as well as when PET scans are and aren't helpful.

Ned

Posted

My doc's didn't use CEA testing either.

Here is some helpful Info: CEA - Carcinoembryonic antigen. A substance that is sometimes found in an increased amount in the blood of people with certain cancers.

CEA assay - A laboratory test to measure carcinoembryonic antigen (CEA), a substance that is sometimes found in an increased amount in the blood of people who have certain cancers.

Posted

I wonder if they are sometimes referred to as "markers?" My daughter the nurse was a little bummed initially when I was diagnosed because I used to get an extensive annual physical with an expensive blood work-up and she wondered why they didn't pick up on markers. I asked Dr West about my cousin getting a blood test after seven years NED to check for ovarian cancer recurrence. He said yes there were such tests for certain cancers but not lung.

Judy in Key West

Posted

Yes, CEA is a "marker" much like PSA or CA125. MSKCC in NYC does not use them either. Perhaps because my PET was so crummy? All I know is CEA is a test for tumor markers and mines coming down with great alaricity. Another funny thing is, Im having a chest x-ray on the 29. That was added on after I saw the onc. It came up on my next "schedule". I didnt report any change in symptoms. Just the Post nasal drip.

I will not stew these next 3 weeks, and camp is 200 miles away, so for time being, I'm going with it. Beats the heck out of hospice. But now...........I must post the question, has ANYONE had success following CEA values?

Dont make me use a Hall Pass :wink:

Mary

Posted

The pin-needles thing is probably Peripheral Neuropathy from the carboplatin.

I think the main worry about avastin is bleeding problems

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