Avastin and joint pain

Bonniekins

RockyB said:

Living with Avastin

First, I'll start by saying that I'm not one to turn to support groups, online or in person, but was quite relieved to find so many people experiencing similar symptoms to their Avastin treatment as I have been to mine. That said, I figured it only fair to pay it forward by sharing as well, for the future person who comes on here looking for someone to relate to them. So to those of you who have shared, I thank you!

I was diagnosed almost exactly 1 year ago with Stage 4 Fallopian Cancer. I immediately went through a full hystorectomy, they scraped the omentum and did detailed removal of as much residual cancer "grains" as they could before stitching up my 16" belly scar. Right after, I started 6 rounds of super chemo every three weeks, lost the hair, and was laid up for the next six months, totally useless to the world.

Once chemo was finished, we tried moving me to the LYNPARZA treatment because it was most effective with my genetic makeup. (I HIGHLY recommend getting the genetic testing to help guide your treatment, after you've been diagnosed and hopefully have life insurance in place. NEVER do genetic testing before having life insurance secured.) . ---But the Lynparza was impossible for me to handle. I was SO SICK all of the time. ALL of the time. Every minute of every day without any relief.

So, they switched me back to Avastin for maintenance, and I'll be on it for the next four years, possibly the rest of my life. 

Now, compared to the Lynparza, this Avastin stuff is a DREAM. Granted, I'm far more healed from my surgery today than when I first tried the other drug, so I HAVE considered that could have played a huge part in the strength of the side effects I was experiencing. Still, the Avastin was immediately a breath of fresh air, even if it came with its own struggles. I am still thankful to have it for a treatment, but do continue to explore additional medical options in the meantime.

For me, I experience extreme bone pain from the Avastin.

• My ankles each feel as though they are healing from being smashed in a rollerblading accident.
• My shoulders are so tense, I'm in physical therapy to lower my ribs, which have raised out of place so much I constantly look like I'm shrugging "I don't know".
• The brutal strikes of knee pain come and go randomly, it seems, but always ache extra special now under the kneecaps.
• I'm stretching at least 25 minutes out of every hour I'm awake, but if I sit still for more than three minutes I turn to stone.
• But if I'm active for more than 5 minutes, I feel like I ran a marathon and my instant-menapause hot flashes kick in even more often- Yay! 
• I can feel the individual pain between every knuckle of every finger on each hand through the palms and radiating at the wrists- Stretching and rubbing them constantly.
• Neck-shoulders-upperback...They aren't really seperate body parts anymore. They've dried up into each other, forming one big, upperbody-shaped rock.

And the best part is, it is ALL INVISIBLE! So, when I, a seemingly healthy-looking 38-year old woman, use both hands to brace and push my body to a standing position at a speed that resembles a dying sloth, I am consistently being accused of "overdramatizing" my stiffness and pain. Which, as I'm sure many of you are familiar, just feels like a big, warm hug.  

There's nothing quite like surviving an initial Stage 4 diagnosis, surgery & chemo treatments only to be called a big FAKE while you're still pumping one of the poisons into your veins every three weeks to survive. Maybe they think we're getting ADVIL, not AVASTIN? I just can't figure out why it would be hard to believe that a drug like this would have painful side effects?

Again, the struggle is worth it and I'm thankful for the treatment. I can handle the bone & joint pain from the Avastin, the nerve, belly and digestive pain from the surgery, and even the pain of physical therapy to put my rib back into place. But the pain of having a friend or family member doubt me like that, MID-treatment, just a year out from the surgery and diagnosis...is unbearable.

Wishing the best to anyone who is on this page looking for answers- For yourself or for a loved one, everyone here has been touched by cancer and I wish you all the strength, courage, patience and support you need to get through your time. Thank you for listening.

Rocky
Minneapolis, Minnesota

Avastin Side Effects - Maintenance Treatment

Hi RockyB - I love the humorous way you described your Avastin experience. You have a Great Attitude. Oct 2018 is when it was diagnosed that I had Stage3C Grade3 OC (primary fallopian tube). They did my debulking surgery November 2018 & Chemo began in Dec2018. My protocol was the dose dense regimen of 18 weekly treatments (6 cycles). 1st week of cycle was Avastin, Taxol, Carboplatin, followed by next 2 weeks of just Taxol. I've been on Avastin maintenance since May2019. My CA125 went into normal range at about week 9 of frontline treatment and remains there 9 months later. I still have residual neuropathy in the hands & feet that's annoying, though tolerable. My nose has dripped nonstop with minor nose bleeding on occasion. The worst of it is clearing the sinuses each morning upon waking. Yuk! I also get the hoarsenes which makes it pretty tough to communicate. I've not had the significant joint achiness that many others are suffering from. The first I noticed any pain was around Aug2019 when a thumb I had broken 40 years ago swelled and was excruciating to use/bend. That went away, but, a couple months later the fingers on my hands don't want to bend in the morning. I addressed It with my PCP, who thought it was arthritis. Phoey!!! The Oncologist said I could take a break from the Avastin after complaining to him about the hands. We know it's the Avastin. I can get the hands working after being up for awhile, so I've chosen to live with it. I feel so blessed that I survived the first round of cancer given the prognosis. What is really freaking me out is the prospect of going on a PARP inhibitor. Somatic testing of my tumor showed a BRCA2 mutation &  it's HRD+. They've recommended Rubraca. Hearing that the risk of that med (and the other 2 FDA approved PARP's) can cause Acute Myeloid Leukemia, I am very hesitant. Trial results say 1 - 2% of patients do, but another posting on this site say the risk could be as high as 10%. I'm not done researching and cussing/discussing with my doctors. Currently I'm of the position that if we've exhausted all other treatment options and it's the choice between Hospice or taking a PARP for a last ditch effort, I'll take Rubraca. Perhaps there are others on this forum who could weigh in on this topic. Frankly it's terribly difficult for me to understand all the scientific data from the Trials.