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Avastin (AC & Taxol, too)

coehler
Posts: 3
Joined: Sep 2007

Hi there! I had a bilateral mastectomy due to a 4 cm invasive carcinoma in the right breast. That was a year ago, on Sept. 3. I then had AC (Adriamycin Cytoxin), Taxol and Avastin. The Avastin was a study, and I took 18 out of 30 treatments & stopped because of high blood pressure & migraines. I actually started the Avastin at the same time as the Taxol. I was told it is double the amount that colon cancer patients receive. Anyway, Taxol finished in Jan. 07 and Avastin in May 07. In April 07 I began having terrible migraines (I had a few earlier, but not almost every day). I also began having neuropathy, with pain, tingling & numbness. Nerve testing (OUCH!) showed no large nerve damage but the neurologist said it was definitely neuropathy. I'm taking Neurontin 3 times daily now, and it takes the edge off but may have to be increased. I take Fioricet (barbituate, caffeine, Tylenol) for the migraines. I also have Oxycodone/Tylenol for the breakthrough pain (I also have a jpouch from having my colon removed 5 years ago, and I have Crohn's & pain & then there's the lymphedema in my right hand and arm...yikes). Has anyone else had any long-term effects with Avastin? My onc acts like I'm a freak :) I used to have such a high pain tolerance. I try not to take anything and then it hits me like a truck. I'm now unemployed, after always working a 40-hour week. My body just caved in :) Oh yeah, I also have confusion and short-term memory loss-more than just chemobrain I'm told. The onc took me off Tamoxifen for 6 weeks to see if my brain cleared up, but it made no difference so I'm back on it. It doesn't seem to be causing any of the weirdness :) I appreciate your input!

CinciRick's picture
CinciRick
Posts: 23
Joined: Mar 2007

Hi coehler, it is sad to hear about your problems. I did not experience the headaches when i was on Taxol / Avastin. I don't work anymore but when I did, I tried a drug that can help with chemobrain. It is called FOCALIN which is almost the same as RITALIN used for kids with Attention Deficit Disorder.

I showed my ONC the results from the tests done at the University of Cincinnati and he wrote me a prescription. FOCALIN XR is a newer version that is Xtended Release so you can take it just once a day. I think it helped some but it did not have a large dramatic effect I was hoping for. After going on disability I stopped using it. You might want to give it a try. I think it was an inexpensive drug and my insurance covered it. I think the highest dose I tried was 30mg at one time. It takes about 20-30 minutes to kick in. Here are the links to 2 web sites about the drug.

http://healthnews.uc.edu/publications/findings/?/1628/1632/

http://www.cancer.gov/ncicancerbulletin/NCI_Cancer_Bulletin_052405/allpages

CinciRick's picture
CinciRick
Posts: 23
Joined: Mar 2007

Hi again from CinciRick,

Are you taking any vitamins to help fight the side effects of the chemo? I can't take a One-A-Day multivitamin since the vitamin K would reduce the effects of the Coumadin blood thiners, but here are some ordinary vitamins I take.

3 Folic Acid tablets 400 MCG each
2 Calcium + Vitamin D tablets 1200mg each (200 IU each) The "D" helps absorb the calcium so they are sold as one capsule
1 Potasium 99mg tablet
1 B12 1000 mcg

This web link mentions use of Folic Acid and B-12 with Avastin.
http://www.acscsn.org/Forum/Discussion/thread/reply?page=&pid=139282&msgrid=46&subj=Re:%20Avastin%20(AC%20%26%20Taxol,%20too)

I also take Vitamin C, Fish Oil, and 2 Sennekot every day but they are not as a direct result of chemo side effect.

I showed this list to my ONC, Pulmonoligist, GP, and cardiologist and they were all OK with these choices. I take these every morning.

I take 30mg of Prednisone twice per day, so i need a sleeping aid to get t sleep. RESTORIL (temazepam). Ask your ONC about the Folic Acid, because it is not recommended for all chemo drugs, just certain ones. For some it enhances the chemo effect and reduces side efects. For some it could counter productive.

Another thing you may ask about. The Avastin drug company recommends DECADRON the day before chemo and then 2 days after. Are they doing that for you? I could be confised, maybe it was the Alimpta not the Avastin that made this recommendaton.

Well the sleeping pill is starting to kick in so I should stop writing emails at 3 am. I hope this helps you.

Cinci Rick

Diane03
Posts: 42
Joined: Jun 2008

I am starting Alimpta and have to do the decadron 3 day routine.

3cbrca
Posts: 208
Joined: May 2007

Hi
I had a subtotal colectomy 4 years ago and a bilat mastectomy 7 months ago after 8 weeks of dose dense AC and 12 weeks of Tax. I also have lympedema in my right arm and chest.
The Avastin was tough (painful hand and foot syndrome - skin fell off) and did some cardiac damage and the Tax caused the worst muscle pain. I get stabbing pains from the lymphedema. I don't have any residual pain from the AC/Tax, but I do have a freakish short term memory loss. You're not a freak. I was so surprised to find myself taking Vicodin on and off during tx, surgery etc. Still take it occasionaly for the chest lymphedema. I just took a leave from work - my body gave out - I don't know if it will work for you, but I'm swimming most mornings and working hard to increase my excercise tolerance every day and its really helping me feel better physically and mentally.
Take care,
She

lfly's picture
lfly
Posts: 50
Joined: May 2008

I have taken some of the same chemo as you. Had metastatic breast CA. spread to bone and lung. I started this deal in 2001 and the mets happened in 2006. Anyway, side effects were numerous and the neuropathy in my fingers has dissipated greatly and my legs and feet don't burn, tingle or have extreme heat like they did. I have recently, about 3 or 4 months ago, quit taking the Lyrica. I still have some discomfort late in the day especially if i don't lay down sometime in the early afternoon. I try to lay down for at least 30 minutes but no more than an hour, as i still have problems getting to sleep at night. I usually don't sleep during the day but just to be horizontal and read or just listen to some music really helps. I wish you the best and hang in there, maybe yours will get better too.

oh yeah, I also take fish oil(for arthritis,heart health & cell growth), one a day vitamin, recently added B12 1,000mcg for deficiency.

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