my husband is going to start avastin this thursday, heard it is well tolerated, hope this is true, even with growth of the tumors, he is able to continue life except driving his truck

Hi, Deb.

I've had two rounds of chemo that included Avastin. The only side effects I had were a numbness of the very tips of my fingers and toes and sensitivity to cold in my fingers. The sensitivity went away in a short time while the numbness hung on for a month or so.

I'm not sure whether these effects were related to Avastin, the other drugs included in the chemo or a combination of all that stuff.

I'm sure the effects vary from person to person, but with me there were no debilitating or long term effects.

Tom

So far, only side effect that my husband has had from the Avastin is a raspy voice. Now we match as I have a raspy voice from my GERD and papillary thyroid cancer!

I have just started my Avastin regimen. My first does was last week and my next is next week. No problems at all during the initial does, but I have to admit that for some reason, aside from apparently not being able to ward of the Cancer, I seem to be able to handle the drugs just fine. Between all the stuff I take (Temodar, Dexamethozone, Keppra, Clonazepam, Prilosec, Ondenestron, Prochloroperazine, and Nuvagil) I have had no noticeable ill effects from any of them. This was one of the reasons why the DRs felt pretty confident that I would be able to handle the Avastin as an adjunct therapy. I am still watching close for some of the serious stuff that can happen but so far, after just the first treatment, I have to say that I do feel a bit peppier. maybe it's just a placebo thing at this point, but I am more than willing to give the new stuff a try. 30 Minutes 2 days a month, lets see how it goes.

Thank you everyone. We noticed that the lovenox injection sites seemed to ooze a bit (about 6-8hrs). Doctor said was probably from Avastin affecting clotting, but was not concerned. I am making sure that there are no blood vessels visable when I select the injection site so as to decrease likelihood of source for oozing. Either that is helping or by second week, was no longer affecting clotting. Had second infusion today.

He is eating well, feeling well and staying awake most of the day - such a change from last month when the tumor was progressing.

Deb

my 22 yr old son gets Avastin injections twice a month. He takes Temodar 5 days out of the month. He seems alittle more tired a few days afterwards, he did have some leg pains but they come and go, on the website it lists some of the reactions some patients get. He has been doing this about 2 1/2 months so far, prayers be with you both.

my husband has been taking temodar 5 daysoff 23 days, he started avastin iv infusion every 2 weeks he gets his 4th dose this wednesday, had mri today showed 50% decrease in one area but some growth in other areas, he is still able to go about life semi normal gets tired easily, takes evening naps and eats 2 meals a day but he likes loosing weight he is 6 ft and weighs 191 lbs, he has hard time realizing he has any problems be cause he feels good, i have tried to make him face reality but i have decided to live like he is not sick like he does and enjoy a normal life, he rides his motorcycle frequent, that is his joy in life,

My dad passed in December 2008 GBM Grade IV. beating a 3-9 month given average for the case being 2mm from the brain stem. He lived almost two months with a system of pre-physical therapy to build him up and prevent atrophy from the onset of his care as well as brain food diet and brain repair food diet. In addition, a critical care staff was appointed to monitor him during every new treatment and to work with atrophy related conditions with light physical stretch. The Avastin was shown to result in the most significant reduction in tumor size as much as 50% for the one and 20% for the other if I recollect. The issue to watch for sure are diarrhea. I never waited for that to occur from the avastin and cpt11, so we went into BRAT mode two days before. BRAT stands for bannanas, Rice, Apple Sauce, and Toast. In addition, make sure plenty of water is given. The diet he went on that showed immediate improvements on energy, focus, mood, and mental sharpness was as follows: Blueberries that are show in radioactive iodine PET scans to be one of the only foods in the world to penetrate the brain barrier releasing antioxidants crucial for brain repair as well as fighting foreign organic/inorganic agents. Walnuts, Olive Oil, Sea Weed from MISO soup with TOFU, Organic Soy Milk, NO MILK due to steroids/mucous causing/antibiotics or icecream unless made from scratch out of SOY or Milk FREE or antibiotic FREE/Steroid FEE. These agents do not mix well with the body. Another suggestion is get rid of the under arm deoderants and the sippies that have ALUMINUM that the straw POKES and SCRATCHES microscopic aluminum. BOTH DEODERANTS and SIPPIE BOXES with Poke holes have Aluminum one of the few metal besides Mercury that can get through the BRAIN BARRIER and cause HAVOC with the already existing tumor. The deoderant companies should remove the aluminum. Read the under arm deoderant warning to go to hospital if ingested and it goes under your arm where your pores are exposed also. Iron is very important with platelets and blood issues with infusion so keep up with raisins, hamburger meat, and spinach if approved by your dr. and condition as with all this information used for my father that MAY NOT BE VIABLE for your CONDITION. I helped three people of which two were the actual GBM warriors, and extend my help as a good Samaritan via my email joe@tsrec.net anytime and can help get answers if you are too tired or burned out, and may have some information with my dads success that may lead to answering questions and helping you or loved ones situation. GOD bless everyone and have a great week. I think this board is awesome and state of the ART and do commend the NBTS but hope they emailed prior to the change as well as emailed to welcome back. A conference call with explaination or even now would be very helpful as there is some frustration as per some of the post. This medium provided by NBTF is second to none as well as the new technology.

Wow, Joe - it's good to hear from you. Thanks for posting.

My brother's GBM tumor is steadily growing = third progression. He's done the standard treatment w/aggressive resection 2 yrs ago, 6 weeks of Temodar, radiation. Had a recurrence March '09. He started Avastin then had a recurrence Feb '10. We're beginning a 'cocktail' approach = Carboplatin, Avastin, Celebrex, Accutane, Melatonin, Tagomet, Lovastatin. Should we add Tamoxifen? Thalidomide? Any one know which order of drugs = more tolerated? He's on the two chemo drugs, Celebrex and Accutane. He's doing well but a bit fatigued, dry mouth from the Accutane. Advice? Any one else trying this approach?

Hi--
Isn't regrowth a drag? I lobbied for Avastin since my diagnosis (7/08); When I read about Ted Kennedy's diagnosis, I really read up on glioblastoma. I'm a pharmaceutical copywriter by trade and accustomed to learning all about various diseases, how they work, and what's needed to address them. i read a wonderful article on Avastin by one o the Drs. Friedman at Duke U an even called him for a chat about it. He is, or was, a great proponent of Avastin, though he assured me that my insurance wouldn't cover it w/out a reurrence. Several months after my diagnosis, after radiation and temodar, I had a recurrence of my own. I then start on Avastin with irinotecan every otherweek. The irinotecan proved a little hard to deal with, so my neuroonc dropped that element. I've been on Avastin alone, every other week, ever since and in that time--ovr a year--have rmained stabl. I hve an MRI next week, so I'm preparing for my luck to have run out, but in my hart of hearts don't believe there will be any change. I like Avastin, though I've added Provigil to stay awake more easily and ondansetron for the rare moments of nausea I experience. I endorse Avastin, based on my experience; I just hope yours is as positive. I've heard that for some indications it either works or it doesn't. Glioblastoma is not one of at group as yet. I have to say,though, it's sure been working for me! Bet of luck to you. Keep us posted.

Me agin. Haven't had too many side effects from Avastin--just unpredictable fatigue and a bit of nausea from time to time.Best of luck--again!

I've been on Avastin for over 4 years now bro. You may get a little high blood pressure due to the nature of the drug (preventing the tumor from getting any oxygen) but if you're in decent shape physically, you've a good chance at some good long term results.

You should be able to ween off of some of those medications you mentioned...Keppra for starts. As the Avastin begins to work in your body, you shouldn't need so much additional stuff that is usually given during standard chemo.

If have any questons, please feel free to ask me.

Rick Deutsch

My mom has been doing Avastin for 6 months twice a month, there has been no side effects, but I am wondering has anybody out there done Avastin for a year or more? Are there any side effects then?

I am happy to read most of these posts on Avastin. Thanks to all of you out there for the info.! My mother (68 yrs old) was just diagnosed on May 24 w/ stage 4 GBM. AFter surgery and looking for the right oncologists we decided to go w/ Emory in ATL. They have been wonderful so far. We have just decided to enroll her in a clinical study there w/ Avastin. She will start radiation/chemo along w/ Avastin at the beginning of her treatment. From what I understand, it is now most widely used after several rounds of chemo & radiation. Anyway, we have been concerned about the side affects so it is nice to hear postive things. Has anyone out there taken Avastin at the beginning of treatment? I would love to hear how it has gone...even if the results were negative.

Hi..Has anyone seen a decline in mobility after being on Avastin? My dad (75 years old) has been on Avastin since March and his being able to walk has really declined in the past couple of months. He started out with a cane since Surgery in 6/2009... now MUST use a walker and someone behind him. He is also on Temodar X7 every other week. Yes... the three spots dad had in Feb are now gone (yeah!) ... but he is having great difficulty getting around. We will now begin home health care for 2 hours in the morning to give mom a break in lifting him, etc. Any thoughts? Char

I'm glad that Avastin hasn't affected your husbands motorcycle riding! That is so cool that he loves his motorcycle!



Is he in a clinical trial? If you have time, would you mind posting your thoughts about avastin at:

www.intheeyesofapatient.com/forums

There is a forum about Avastin and another one to share your story if you have a few extra minutes. I am determined to find out if Avastin can significantly help brain tumor patients and if it improves their quality of life.



Thanks so much.



Take care,

Courtney

Char, the same thing happened to my dad after he started avastin. It significantly impaired his mobility.



Crazy how some people aren't affected by it and others are extremely impaired.



Take care,

Courtney

www.intheeyesofapatient.com/forums

Courtney, My dad passed away on Fri, Aug 27th after a 14 1/2 month fight. I thank God for the time we had with him and know he is now enjoying eternal peace with no more suffering.
Char

sweetpea
my husband is a truck driver by profession and unable to drive a commercial truck due to diagnosis, but he said no one would stop him from riding his motorcycle, we both have harley's. he can now drive his pickup since it has been a year since last seizure,

Char,

I'm sorry to hear about your Dad's passing. My condolence to you and your family.

Good Morning everyone,

I'm new to the computer, but what a great tool it is to communication with people in the same situation as ourselves. We live in the Santa Clarita Valley and have been to 2 Relay for Life events, but found no connection to anyone who was battling against brain tumors. Our story goes....Last year on July 15, 2009 my husband had symptoms of dizziness, headache, nausea, a sense of confusion and was rushed to the hospital. He had a brain biopsy because the nuero-surgeon wasn't quite sure what was up, so the biopsy was on September 1, 2009. The results of this was it might be herpes of the brain or a possible tumor and lets wait 2 months to see if it grows. I cried and my husband yelled, so at that point we became our own advocates. We had a second opinion and that was a horrible experience, then we found a neuro-surgeon at UCLA for a third opinion and he looked at the MRI and immediately said it's a glioblastoma multiforme stage 1, low-grade tumor or slow growing. The surgeon also wanted to do another biopsy on my husband, but by the time we drove home from the doctors office, he wanted to talk with both my husband and I at the same time on a conference call, he told us after consulting with the nuerologist-oncologist he thought it would be better to do a craniotomy because over the 2 month period of 2nd and 3rd opinions they noticed the mass had doubled in size. We agreed so December 1, 2009 he had the surgery and were so happy he did, they saw that my husband's tumor was very aggressive and the original biopsy had hit the outside of the tumor, now Ucla team upgraded the tumor to stage 4. He started radiation and the temodar capsules in January 2010 for seven weeks and had a MRI at the end of March, the results were devastating to us, but the team moved fast and found the last spot in a clinical trail using a new chemo drug by infusion called, Aflibercept. The only side effect he had was mouth sores for 2 weeks and they adjusted his medicines and there pretty much gone he still has mouth sensitivity to certain foods, but he is handling the treatments well. He'll have petite-mal seizures or auras and sometimes he hallucinates but he had those since the begining. This trail started April 2010 and he goes for infusions every other Friday and he still takes the Temodar. Note: He was offered the avastin drug but the doctors said there was this new drug we may want to try first, because we could always go to the Avastin, I believe it was just being approved by the FDA where the Aflibercept, is only in the 1st phase of the trail, so it's not FDA approved yet, but would be a better choice for my husband and the opportunity was there. Today I'm happy to say the tumor is shrinking some, I know this is a life journey for us and I'm his caregiver and UCLA gave me a notebook to log his drugs, MRI's, bloodtest results, support group notes, etc., but what a great tool this has been. I've also made a notebook for myself because I have grand-mal seizures, I'm Factor-5-Leiden (clots easy) and I'm on 15 mg of blood thinners a day, so I always take our notebooks with us everywhere we go, I can't afford to be in a car accident and no one would know the information. (girl scout skills, being prepared). I hope our story can help some of you, but I know this site is a great place to vent and exchange information. We've met a woman at our support group who has been battling her tumor for 15 years. Very inspiring for us and to quote, Maya Angelou, "Be present in all things and thankful for all things". My husband and I have managed to have alot of memories and spend more time with family and friends,because we don't know what tomorrow will bring. Hugs'n'Smiles to you all, Buttercup

Char,
I've been reading some of the stories and just came upon yours where your dad had passed, my heartfelt condolences to you and your family. Buttercup

Jackie2 & Buttercup - thank you. We truly miss my dad but know he is now is a better place.

My 27 yr old son has been fighting a glioma on brainsten for last year.
went through radiation last summer and thought he was winning the battle but not so.

Dr Blakely is his dr at John Hopkins. Glioblastoma through out spine. She started hime on Cystplatn and Temador once amonth plus Avastin every 2 weeks. 2 months and so far no real problems.

Debbie