I feel very guilty about complaining when I read some of the other posts, but..

Hi Carla, I am on the same
Hi Carla, I am on the same regimen. Finished the carbo/taxol/avastin combo in mid December 2011 and doing Avastin every three weeks until 10/2012. I also have the aches in muscles and joints. Some days are better than others, but one of the main side effects of avastin is the aches, so it may be we have this until we're done with the maintenance treatment unfortunately. I do find walking sometimes helps also, but I also just started taking vitamin B-12 & B-6 daily and it seems to be helping some. I find the pain has subsided some. You may want to ask your doctor about it.
Hang in there, it will get better!

Carmen

I have a keen interest in
I have a keen interest in speaking with people who also experience moderate to severe pain on maintenance Avastin. You'll see from my profile I'm on the Avastin-alone part of treatment.

Each visit with the gyn/onc is an opportunity to share this unpleasant side effect: Getting up from seated or prone positions after rest is painful. Knees, hips (esp), toes, and in recent months shoulders, neck, fingers all...hurt. Once moving, I feel ok. I find it particularly distressing because my 40 year old body can't seem to recover from this pain on movement. But even though it aggravates the condition I keep moving every day (gentle yoga, bicycling, walking, stretching) because I know it's important to keep building strength in the muscles. Still, I feel like the tin man. Spare some oil?

My gyn/onc reports that most who are in the maintenance phase of Avastin for her center's clinical trial exit the study--because of this side effect alone! I think that's significant.

I've spent hours searching medline, science direct, google scholar and the internet at large looking for acknowledgement that medical professionals or even Genentech/Roche (the manufacturer) are aware of this issue. I have yet to find any mention of this problem--just reports from people like us who are taking the drug. Often, patients are told by their doctor that it's the other chemo drugs but for those of us who are only on Avastin we provide much needed data/insight about the true longer-term effects of Avastin.

Avastin is designed to disrupt the growth of new blood vessels (anti-angiogenesis). This is fantastic for keeping new tumor growth at bay. If the tumor can't get new blood supplies established, it is likely to die.

My hypothesis is that in addition to disrupting tumors' blood vessel development, Avastin disrupts the good angiogenesis necessary to repair the day-to-day micro damage our muscles take from using our bodies. We see the effects in the areas of the body we use most: hips, knees, neck (holding our head up), and around other major joints (even fingers and toes).

There is some research on the general issue of angiogenesis and muscle damage/repair in mice. Yes, mice. But not humans (so far).

I know we're supposed be compliant patients but I'm also a believe in self-advocacy. My gyn/onc told me that she likes working with me because I tell her what's going on with me--she doesn't have to pry it out of me or wonder if I'm holding back information. I *want* her to know the good/bad/ugly. Not all medical providers are accepting of this style of communication but I still think it's worth letting yours know that you are hurting.

-Karen
aka Fearless Honey Badger

I know what you mean
So many times I started my post the same way I don't want to complain but...... You complian away we all have that right even if some one is having it a little harder than you do. I think we can all say it does not matter what you are going through we are here for everyone just the same. This disease takes so much for all of use and we all need to reach out to others for the strangth to fight. I am not sure if our lives will never be the same the old us is gone but the new us is stronger for it. We now know we can face anything that is thrown at us. Please know any time you want to vent come here we are hear for you.

Love, Hugs, and Prayers
Anne

carolenk said:

Welcome Karen
I love your screen name!

Stage IV clinical trials are basically after a drug has been approved & in use on the unsuspecting public. Just recently, the FDA is requiring "memory loss" must be added to the list of side effects of stain drugs. Both patients & clinicians have known this for years. So it will be with Avastin & possibly other anti-angiogenesis agents.

I posted elsewhere that arthritis is a microvascular disease that affects joints--as the blood supply diminishes, so does the cartilage. As with any drug, the risks must be weighed against the benefits. Unfortunately, Avastin has demonstrated a rebound effect when it is discontinued & I'm not convinced that it is the wonder drug we are all desperately seeking.

Thank you so much Carolenk!
Thank you so much Carolenk! I've been lurking for many months drawing inspiration and information from my uterine, ovarian and other gynecologic cancer sisters.

I am definitely in the phase of weighing risks and benefits. I was disturbed to read of the potential for rebound effects after discontinuing treatment with Avastin and feel a bit stuck atm in decision making. Still working that out...

My gyn/onc echoes your sentiment that Avastin is not the wonder drug it has been touted to be but it will be some number of years I imagine before it stops being part of many clinical trials and non-trial treatment plans.

It's a rather unfortunate reality that federal funding (National Cancer Institute) is insufficient for the important research questions that must be addressed. We turn to the drug companies to supplement the funding. Genentech (the maker of Avastin) contributes to a good number of current GOG (Gynecologic Oncology Group) studies and thus Avastin becomes part of the clinical trials we may enter. Fortunately, all clinical trials have the provision of allowing you to exit the study at any point. As important as clinical trials are to the development of promising therapies it's still disconcerting at times to realize I'm just a convenience sample guinea pig and that trials are often part of a shotgun approach to investigating cancer therapies.

Apologies for the rambling...I may have some strong feelings about these topics. Returning to the start of this thread, I think we need to check in with ourselves from time to time to see if we're achieving the quality of life we want--drugs or no. I've read many of the threads from LindaP and believe that she had an amazing approach to this process and lived exactly as she wanted and needed to live. I try to be inspired by her approach.