Avastin and joint pain

whiterose

About to Start on Avastin
My doctor is going to start me on this soon, as I'm in my 8th and last cycle. Reading some of the side effects is pretty scary. Is anyone on this and not experiencing much in the way of side effects? He's making this part of my maintenance program, I'm guessing once every few weeks.....

LoveButterflies

AnneBehymer said:

Let me know what you find
Let me know what you find out you are in my prays and will be from know on. I hate that you are a friend now because of the battle we are fighting but a friend I am. If the avastin is causeing the blood presure and we know pretty much it is maybe they could find another kind of maitance chemo instead of the avastin. You had to look at is it helping me or is it going to kill me staying on it and I would say the numbers you are it I also would worry about the risk. Let me know what happens I have my treatment on Thursday I will be praying for you hope it goes well. Where do you live I am in Glendale AZ?

Anne

Hi Anne, I'm in Chandler.
Hi Anne, I'm in Chandler. I go to St. Joseph's hospital for all my treatment and had my surgery there. They have a great gynecological oncology team there. Actually, they are having a seminar at the hospital on 3/3/12 given by this department that covers Ovarian cancer treatments, recurrence, etc. Go to www.wcn.org for information, best part it's free! I will be attending.
On another note, I did go to my treatament yesterday. I spoke to them about my concerns. The doctor told me that I was the only patient he's had on this clinical trial have such issues with severe blood pressure, boy do I feel special! He is having me continue on my current meds, but he spoke to me about possible kidney problems causing my uncontrolled blood pressure. So I'm getting scheduled for a renal ultrasound to check for Renal Arteriosclerosis (a narrowing of the artery coming out of the kidneys, when this happens the kidney secrets hormones that make the blood pressure go up and it is not controlled by medicine). What? Now possible kidney problems? If the artery(ies) are narrow, I will have to have a stent put in. He said that condition is not caused by Avastin or the cancer, but something I already had and the avastin is bringing it to light. I was diagnosed with high blood pressure in 2006 and the doctors then didn't know why I developed it because I was young and in good health. I never had my kidneys checked, maybe I've had it since then? Who knows. Anyway, I'm praying and trusting in God that he will see me through this also as he has always. I'll keep you posted.

Carmen

AnneBehymer

LoveButterflies said:

Hi Anne, I'm in Chandler.
Hi Anne, I'm in Chandler. I go to St. Joseph's hospital for all my treatment and had my surgery there. They have a great gynecological oncology team there. Actually, they are having a seminar at the hospital on 3/3/12 given by this department that covers Ovarian cancer treatments, recurrence, etc. Go to www.wcn.org for information, best part it's free! I will be attending.
On another note, I did go to my treatament yesterday. I spoke to them about my concerns. The doctor told me that I was the only patient he's had on this clinical trial have such issues with severe blood pressure, boy do I feel special! He is having me continue on my current meds, but he spoke to me about possible kidney problems causing my uncontrolled blood pressure. So I'm getting scheduled for a renal ultrasound to check for Renal Arteriosclerosis (a narrowing of the artery coming out of the kidneys, when this happens the kidney secrets hormones that make the blood pressure go up and it is not controlled by medicine). What? Now possible kidney problems? If the artery(ies) are narrow, I will have to have a stent put in. He said that condition is not caused by Avastin or the cancer, but something I already had and the avastin is bringing it to light. I was diagnosed with high blood pressure in 2006 and the doctors then didn't know why I developed it because I was young and in good health. I never had my kidneys checked, maybe I've had it since then? Who knows. Anyway, I'm praying and trusting in God that he will see me through this also as he has always. I'll keep you posted.

Carmen

who is your doctor
I go to st. Joes on Thursday for my chemo at the 500 building on the sixth floor. My doctor is Dr. Monk would it be cool if we had the same doctor. I gave you my email address make sure you email me.

Anne

AnneBehymer

whiterose said:

About to Start on Avastin
My doctor is going to start me on this soon, as I'm in my 8th and last cycle. Reading some of the side effects is pretty scary. Is anyone on this and not experiencing much in the way of side effects? He's making this part of my maintenance program, I'm guessing once every few weeks.....

every one is different you
every one is different you may not have the same problems I have the pain I found out could be my fibromyalgia while on the heavy chemo it kept it at bay once the medication was out of my system the fibromyalgia came back full force. Don't get worried yet just wait until you start on it.

Anne

LoveButterflies

AnneBehymer said:

who is your doctor
I go to st. Joes on Thursday for my chemo at the 500 building on the sixth floor. My doctor is Dr. Monk would it be cool if we had the same doctor. I gave you my email address make sure you email me.

Anne

What a small world! Yes, my
What a small world! Yes, my Doctor is Dr. Monk! I go on Tuesdays every 3 weeks to the 500 building. This is very cool! Have you ever gone to the Wellness Community in Phoenix? They have a very good Ovarian Cancer support group.

I went for my renal ultrasound this morning. Should get results early next week. Trusting in God that all will work out and I will finally get my blood pressure under control and be able to continue on the clinical trial.

I'll keep you updated.

Take care,

Carmen

whiterose

AnneBehymer said:

every one is different you
every one is different you may not have the same problems I have the pain I found out could be my fibromyalgia while on the heavy chemo it kept it at bay once the medication was out of my system the fibromyalgia came back full force. Don't get worried yet just wait until you start on it.

Anne

Thanks
Thanks for your reply Anne. I talked with my chemo nurse the other day and she said they use tons of this and they've had success with it. She said that they mainly see high blood pressure with it, but that they control that with medication. She said that they mainly see the perforated bowel problems with colon cancer.....I thought they did the first dose in the hospital, but apparently not anymore.....

Kathleen Rae

Carolyn68 said:

AVASTIN
I was diagnosed with PPC JUne 2010, total hysterectomy, chemo every 7 days, on clinical trial with carbo/taxol/.avastin. Then in December 2010 I was done with carbo/taxol and just went on Avastin for maintenance. I recently completed the Avastin in October. Avastin gave me a hoarse voice...joint pain, mostly arms/shoulder. I had bone scan, no cancer, went to osee arthritis doctor, no "art", I was very stiff getting up and down from chair.....I had very dry mouth from Avastin, I went to see orthoped doctor, he said I had frozen shoulder (no MRI tho) I went to see internal doctor, she says I have bursitis. I have had several steroid shots...they help temporarily. One time I had shots in both shoulders.....and then my heart raced for days because of so much steroids in my system. I still have shoulder pain. I usually don't take anything....exercise is the best.Most recently I have had bowel troubles, but they don't know if it is from Avastin or not....So far, they tell me Avastin is the drug....so we will see....my CA125 is 10. Good luck with the pain....it sounds like a side affect! I was also bothereed with drippy nose and nose issues....it seems to be gradually going away.....they told me from Avastin!

Avastin
Hi Carolyn,
I read your Dec. 2011 post. I just joined this support network, and actually came upon it completely on accident. I have been taking Avastin since post surgery in October...first with my carbo/taxol treatments, and now alone, and very soon will also add tamoxifen. The symptoms you describe above could be me exactly! I had a steroid shot in one shoulder, which lasted a spell, but now both shoulders are sore and achy like bursitis. Also general joint pain which I take ibuprophen AND aceteminophen for. The combination relieves the pain. Wow. I thought it was just old age! I was diagnosed with stage 3C ovarian in April 2011. Had an appointment Wednesday to go over the CT scan and get the avastin infusion. The CT scan showed my lymph nodes (which they were unable to get during the surgery) as "stable". However, got a call from my oncologist yesterday who said my CA125 jumped from 9.4 3 weeks ago to 41 now. She is going to repeat the CT scan in 3 months again and continue to monitor the CA125 over the next several visits. That news caught me by surprise and has made me very down since I got the call, because I was feeling so well, other than brochitis and sinus infection I am being treated for. I know I will get a "regrip" on myself. No other option because I refuse to feel sad and vulnerable. Sorry for kind of pouring on you. I think I ventured to this sight for a reason tonight, not accidentally. Because my prayer today has been for courage. Take care, and hope to hear from you. Kathleen

7 angels

whiterose said:

Thanks
Thanks for your reply Anne. I talked with my chemo nurse the other day and she said they use tons of this and they've had success with it. She said that they mainly see high blood pressure with it, but that they control that with medication. She said that they mainly see the perforated bowel problems with colon cancer.....I thought they did the first dose in the hospital, but apparently not anymore.....

waiting to start this chemo
Just waiting for insurance to precertify me so then I can start it I to was told pretty easy tolerated no real side effects but after reading about it scared to death to start it.As I do now take blood pressure medicine. and I will also be taking another chemo drug in form of pills they work great together. Do this for 3 wks then off 1 wk. thanks Sherry

7 angels

whiterose said:

Thanks
Thanks for your reply Anne. I talked with my chemo nurse the other day and she said they use tons of this and they've had success with it. She said that they mainly see high blood pressure with it, but that they control that with medication. She said that they mainly see the perforated bowel problems with colon cancer.....I thought they did the first dose in the hospital, but apparently not anymore.....

waiting to start this chemo
Just waiting for insurance to precertify me so then I can start it I to was told pretty easy tolerated no real side effects but after reading about it scared to death to start it.As I do now take blood pressure medicine. and I will also be taking another chemo drug in form of pills they work great together. Do this for 3 wks then off 1 wk. thanks Sherry

AnneBehymer

Kathleen Rae said:

Avastin
Hi Carolyn,
I read your Dec. 2011 post. I just joined this support network, and actually came upon it completely on accident. I have been taking Avastin since post surgery in October...first with my carbo/taxol treatments, and now alone, and very soon will also add tamoxifen. The symptoms you describe above could be me exactly! I had a steroid shot in one shoulder, which lasted a spell, but now both shoulders are sore and achy like bursitis. Also general joint pain which I take ibuprophen AND aceteminophen for. The combination relieves the pain. Wow. I thought it was just old age! I was diagnosed with stage 3C ovarian in April 2011. Had an appointment Wednesday to go over the CT scan and get the avastin infusion. The CT scan showed my lymph nodes (which they were unable to get during the surgery) as "stable". However, got a call from my oncologist yesterday who said my CA125 jumped from 9.4 3 weeks ago to 41 now. She is going to repeat the CT scan in 3 months again and continue to monitor the CA125 over the next several visits. That news caught me by surprise and has made me very down since I got the call, because I was feeling so well, other than brochitis and sinus infection I am being treated for. I know I will get a "regrip" on myself. No other option because I refuse to feel sad and vulnerable. Sorry for kind of pouring on you. I think I ventured to this sight for a reason tonight, not accidentally. Because my prayer today has been for courage. Take care, and hope to hear from you. Kathleen

pour away
That is what we are here for I am also in the same boat as you are my number in three weekes jumped from 6 to 22, three weeks later it went from 22 - 53, three weeks from then it went from 53 - 69. So now my doctor is doing the same thing I had a scan done about a month ago and it still said it was clear. On Thursday I had my avastin infusion and blood drawn for the ca125 to see what it is. The reason we are watching so close is that since my numbers started to rise I have had a strange head ache and if the number continues to rise I will have to have a MRI of my brain to see if I have a tumor on my brain. So trust me I understand the fear when the number goes up all fo us worry when that number goes up we like to see it go down but never up. You are in my prays and keep us updated on what is going on with you.

Hug, Love, and prayers
Anne

AnneBehymer

Tethys41 said:

Pain
Anne,
I experienced severe knee pain when I was on maintenance Avastin, and was blaming the drug. I could hardley get up from sitting, it hurt so bad. Then I found out I have Hashimoto's and started treating it according to Dr. Datis Kharrazian's protocol, and the pain was gone within a week. I really think my problem was thyroid related. You could ask to have a thyroid antibody test (TPO) to see if you have a similar issue.

had it done
I had the test done before June fourth they were trying to figure out why I could not get over this cold I had and the test came back that my thyroid was working fine. They never figured out that I had ovarian cancer. This was the urgent care I went to for three months telling them something was wrong because I could not breath when I layed down and sometime when I was sitting up it was hard to take a breath. I still would like to go back to that urgent care and tell them to give me back my 300.00 because they almost killed me with all the fluid on my lungs lol. Well anyway thanks for the information I will have it tested again.

Anne

AnneBehymer

LoveButterflies said:

What a small world! Yes, my
What a small world! Yes, my Doctor is Dr. Monk! I go on Tuesdays every 3 weeks to the 500 building. This is very cool! Have you ever gone to the Wellness Community in Phoenix? They have a very good Ovarian Cancer support group.

I went for my renal ultrasound this morning. Should get results early next week. Trusting in God that all will work out and I will finally get my blood pressure under control and be able to continue on the clinical trial.

I'll keep you updated.

Take care,

Carmen

That's it
We have to meet, we are around the same age, we found out around the same time, and we have the same doctor. If I remember you were told you had ovarian cancer the day after my surgery. I gave you my email address please send me an email and I will give you my number. It is cool that we are so close not that we have to fight this beast togeather but we can be each others support. talk with you later.

Anne

AnneBehymer

7 angels said:

waiting to start this chemo
Just waiting for insurance to precertify me so then I can start it I to was told pretty easy tolerated no real side effects but after reading about it scared to death to start it.As I do now take blood pressure medicine. and I will also be taking another chemo drug in form of pills they work great together. Do this for 3 wks then off 1 wk. thanks Sherry

don't be scared
They will keep an eye on your blood presure and if this medication does not work for you they will find anothre one that will. Like I said earlier everyone is different you can not go my someone else side effects as being what will happen to you. I have not had alot that others have, then I find someone where we have the same ones, or I find that I am the only one having a serton kind of side effect. Please don't let what you read on this site to scar you we tell our stories so you have someone to talk with to help you throught this battle. I will be praying for you and know the doctors will not give you something they do not think will help you.

Anne

pkozak5

Avastin and joint pain
Hi Anne,
I just finished a year of Avastin after 7 months of Carboplatin, Taxol, and Avastin. My joints were killing me. I'm 49 and usually quite active, but I had a hard time getting out of the car. Doctors first told me it was the Taxol, but the pain was really bad even after I was just on the Avastin. They looked at me like I was crazy. Finally, this past December, I saw one of my nurse practitioners and she asked me about the pain. She said it was from the Avastin and since I was off it as of Dec 2011 I would start to feel better in a few months. Sure enough, the past couple of weeks I have noticed a significant improvement. There is hope!

jadav1956

pkozak5 said:

Avastin and joint pain
Hi Anne,
I just finished a year of Avastin after 7 months of Carboplatin, Taxol, and Avastin. My joints were killing me. I'm 49 and usually quite active, but I had a hard time getting out of the car. Doctors first told me it was the Taxol, but the pain was really bad even after I was just on the Avastin. They looked at me like I was crazy. Finally, this past December, I saw one of my nurse practitioners and she asked me about the pain. She said it was from the Avastin and since I was off it as of Dec 2011 I would start to feel better in a few months. Sure enough, the past couple of weeks I have noticed a significant improvement. There is hope!

Hi Ladies !! I have been off
Hi Ladies !! I have been off chemo since Dec.2011. I had 6 txs of carbo/taxol and 3 of taxotere/carbo when there was the shortage of taxol. My onc said I needed a break since my platelets were low. Platelets stayed at 55 for awhile. My ca125 has been low at 21. CT scan done showed shrinkage of enlarged lymph nodes on left side- rt side enlargement has been stable for the last 4 months at < 1 cm. I had my last onc appt on 3/1. We talked and he told me he was not one to sit around, and wait for ovca to return. I agree. Anyway I am starting chemo again on 3/15 as a maintenance dose with probably taxotere and avastin. It will be another year of chemo, but I am ready to go on. We all do what we must to survive and hopefully at some point save someone else from ever having to go through any of it. I am very thankful for this board and every single lady who has ever written about how she feels, meds she has tried, any and all advice and suggestions on how to deal with this terrible disease. This place is my refuge. I don't always post but read a lot. We have all dealt with problems no one else can understand. So thanks to all of you!!! Please keep posting and FIGHT on !!!! Jackie

AnneBehymer

jadav1956 said:

Hi Ladies !! I have been off
Hi Ladies !! I have been off chemo since Dec.2011. I had 6 txs of carbo/taxol and 3 of taxotere/carbo when there was the shortage of taxol. My onc said I needed a break since my platelets were low. Platelets stayed at 55 for awhile. My ca125 has been low at 21. CT scan done showed shrinkage of enlarged lymph nodes on left side- rt side enlargement has been stable for the last 4 months at < 1 cm. I had my last onc appt on 3/1. We talked and he told me he was not one to sit around, and wait for ovca to return. I agree. Anyway I am starting chemo again on 3/15 as a maintenance dose with probably taxotere and avastin. It will be another year of chemo, but I am ready to go on. We all do what we must to survive and hopefully at some point save someone else from ever having to go through any of it. I am very thankful for this board and every single lady who has ever written about how she feels, meds she has tried, any and all advice and suggestions on how to deal with this terrible disease. This place is my refuge. I don't always post but read a lot. We have all dealt with problems no one else can understand. So thanks to all of you!!! Please keep posting and FIGHT on !!!! Jackie

Thanks you so much we all
Thanks you so much we all are support for each other and I love all my teal sister and thanks for the hope you have now given me that in a few months the pain will start going away

Love, Hugs and Prays

lrcolahan

Multiple Side Effects From Avastin

I am so happy that I found this network!  My doctor flat out told me the Avastin was NOT the cause of my increased joint pain!  Someone else on here is experiencing issues with their nose.  I am too.  It drips and runs all the time and there is actually a painful hole that has been worn down on the septum.  There is extreme joint pain in both of my thumbs that I did not have before and stiffness in my back and feet when I try to stand after sitting; even for as little as 15 minutes.  Dry mouth and hoarseness are also some of the side effects I am experiencing. The neuropathy in my feet is getting worse as well.  I am going for an ultrasound on my left breast today because they found something in my mammogram the week before last.  My CA125 was elevated from 126 to 679 in less than a month.  I've only been on Avastin for maintenance since June.  I guess that's a bad idea...looks like it back to chemo treatments again.  Thank you for everything that you have all shared here.  I thought I was going crazy and finding things wrong that weren't really there.  I KNOW I'm in pain and I know the Avastin has something to do with it...this helps to validate those feelings.  Y'all are great!  Laurie

Pbprice

lrcolahan said:

Multiple Side Effects From Avastin

I am so happy that I found this network!  My doctor flat out told me the Avastin was NOT the cause of my increased joint pain!  Someone else on here is experiencing issues with their nose.  I am too.  It drips and runs all the time and there is actually a painful hole that has been worn down on the septum.  There is extreme joint pain in both of my thumbs that I did not have before and stiffness in my back and feet when I try to stand after sitting; even for as little as 15 minutes.  Dry mouth and hoarseness are also some of the side effects I am experiencing. The neuropathy in my feet is getting worse as well.  I am going for an ultrasound on my left breast today because they found something in my mammogram the week before last.  My CA125 was elevated from 126 to 679 in less than a month.  I've only been on Avastin for maintenance since June.  I guess that's a bad idea...looks like it back to chemo treatments again.  Thank you for everything that you have all shared here.  I thought I was going crazy and finding things wrong that weren't really there.  I KNOW I'm in pain and I know the Avastin has something to do with it...this helps to validate those feelings.  Y'all are great!  Laurie

Avastin side effects

Hi Ircolahan

I'm having some of the same issues. I have one more chemo treatment to do; My doctor wants to put me on avastin for maintenance, but I'm having second thoughts. I will have to weigh the side effects against the benefits, it just may not be worth it

EightyEight

lrcolahan said:

Multiple Side Effects From Avastin

I am so happy that I found this network!  My doctor flat out told me the Avastin was NOT the cause of my increased joint pain!  Someone else on here is experiencing issues with their nose.  I am too.  It drips and runs all the time and there is actually a painful hole that has been worn down on the septum.  There is extreme joint pain in both of my thumbs that I did not have before and stiffness in my back and feet when I try to stand after sitting; even for as little as 15 minutes.  Dry mouth and hoarseness are also some of the side effects I am experiencing. The neuropathy in my feet is getting worse as well.  I am going for an ultrasound on my left breast today because they found something in my mammogram the week before last.  My CA125 was elevated from 126 to 679 in less than a month.  I've only been on Avastin for maintenance since June.  I guess that's a bad idea...looks like it back to chemo treatments again.  Thank you for everything that you have all shared here.  I thought I was going crazy and finding things wrong that weren't really there.  I KNOW I'm in pain and I know the Avastin has something to do with it...this helps to validate those feelings.  Y'all are great!  Laurie

Sounds familiar, I was on

Sounds familiar, I was on Avastin 11 months. I had all those sympoms too, headaches due to skyrocketing blood pressure, then my gums started to bleed! I ate mashed potates and they bled. After dealing with the awful hoarseness, nose bleeds, aches and pain I was so ready to be off the stuff. (All the while my doctors was saying "you can't blame everything in the world on Avastin! I almost clocked her, but I could barely breath at the time.) But it kept me going that long, gave my body a break from the chemo, I'm grateful for that.

RockyB

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