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Avastin withheld due to blood thinners

Chelsea71
Posts: 1170
Joined: Sep 2012

My husband, Steve's, blood clots continue to be an issue. Went to chemo on Wed. Saw onc before chemo. Face and neck still really really really swollen. Voice has not sounded normal. I think the onc was concerned. I asked her if she could prescribe a steroid to reduce the inflammation. She presc. dexamethasone 4 mg. Half tab B.I.D. (4 mg daily). Worked like a charm. Face looks almost normal. Voice normal too. One of the clots is near the portocath. There is concern about whether the clot is hard or soft. If hard, great. But if soft, it may be absorbing the chemo and therefore the chemo will be less effective. He goes for a portogram on Wed. This will determine if it's soft or hard. If soft, they will not use the port for chemo. He will get it through a vein and have to stay in the hospital for the entire 3 days. (until disconnection time). Hopefully it's hard. I think over time the blood thinner will cause it to become hard and then hopefully dissolve. I really don't know. Meanwhile the onc has stopped the Avastin. She is nervous about him getting it while on blood thinners. She will bring this up at an up-coming meeting and get others opinions. Until then, no Avastin. Is anyone on blood thinners and Avastin? It seems to be this oncologists nature to be very cautious. I wonder if it's necessary to withold the Avastin? Any thoughts?

Chelsea

herdizziness's picture
herdizziness
Posts: 3402
Joined: Apr 2010

When I had my heart attack and went on blood thinners I had to quit Avastin the complete time I was on the blood thinners.  

Here's hoping the blood clot dissolves quickly.

Winter Marie

Chelsea71
Posts: 1170
Joined: Sep 2012

****! Steve will be on blood thinners for the rest of his life. Thanks for the response, Winter Marie. What kind if blood thinner did you take and was it oral or an injection?

Sandy - if you're following this. I remember you saying that your daughter was on lovenox. Could she take Avastin with her chemo?

Thanks
Chelsea

herdizziness's picture
herdizziness
Posts: 3402
Joined: Apr 2010

It was oral, called Plavix or Clopidogrel 75 mg.

Winter Marie

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

Wow Chels!

The onc couldn't figure out on her own to try a steroid?

That's what always amaze is how WE the patient have to doctor ourselves when "the experience" around us - fail us.

Good call!!  And so glad that the swelling is down...swelling bad enough  to choke his voice off...could have led to breathing if left unattended.

You probably saved his life...

I believe I would want you on my team:)  You're GOOD!

Tell hubby I said so, LOL!

W2Go!

-Craig

 

Chelsea71
Posts: 1170
Joined: Sep 2012

Hi Craig,

I'm really astounded by the mistakes that have been made over the course of the past two weeks with regards to these blood clots. I think there have been "so many mitts in the pot," that the "right hand doesn't know what the left hand is doing". Neither the thrombosis doc or the onc thought of the possible complications of the clot near the portocath. Took a chemo nurse to recognize there might be a problem. As far as the steroids, I didn't just mention them, I had to convince her to try them. Had we stayed quiet, we would have left that app. with nothing and his head would still be as big as a watermelon. You really can't just sit back, go for the ride and assume your doctors know what their doing. Thank God for the medical websites and all you guys here. Sadly, this seems to be our most reliable source of info.

All for now,
Dr. Chelsea

janie1
Posts: 753
Joined: Apr 2011

Good GRIEF....Chelsea.  You had to convince the doctor to try steroids???!#!!  That's just plain wrong....scary.  You deserve the doctor credentials......way to go and being assertive.  Sigh...

And, i can't believe the doctor initially had the frightened look on her face when she saw Steve.  Couldn't she at least faked it and remained expression-less until she composed herself?

The last thing a patient needs is to see that look of horror on the doctors face.....for crying out loud.

My best to you.....and to better days.

Chelsea71
Posts: 1170
Joined: Sep 2012

Yeah, it is kind of scary. She seemed concerned about the nausea that the steroids may cause. Nausea has never been an issue for Steve. With all the Folfiri, he has not experienced 30 seconds of nausea or any gastrointestinal discomfort. I pointed out to her that something had to be tried. Nausea would be a small price to pay to reduce the swelling and other symptoms. Plus, aren't the clot symptoms more serious than possible nausea? She prescribed pantoprazole as a P.R.N. He hasn't had to use it.

Even the thrombosis doc who is used to seeing svco (superior vena cava obstruction) symptoms, was surprised by Steve's appearance. Told Steve that he was the "talk of the hospital". (and it's quite a large hospital). Steve actually got quite a kick out of that. I must admit though, it really was quite something. Very big face and neck. Very blue/purple skin. All kinds of blue veins popping out of his chest and even some on his back. They were trying to compensate for the vena cava vein that was blocked. I really hope those blood thinners are doing their job and the symptoms don't come back. There is enough to deal with with the actual cancer. Additional problems, we do not need!

Take care,
Chelsea

LivinginNH's picture
LivinginNH
Posts: 1302
Joined: Apr 2010

Dang!! That description of his appearance was much worse than I had previously imagined.  I'm glad that you've discovered early on that the doctors can often be clueless.   And Craig's right - you probably saved his life!

All my best,

Cynthia

herdizziness's picture
herdizziness
Posts: 3402
Joined: Apr 2010

Watching out for your hubby!  

Winter Marie

janie1
Posts: 753
Joined: Apr 2011

double

smokeyjoe
Posts: 1428
Joined: Feb 2011

I've been on lovenox for two years now, shots every day....oncologist said I'd be on lovenox for the rest of my life.... my oncologist was VERY hesitant to try avastin on me.    I haven't had any blood clot issues in two years though,  maybe that's why we're trying the avastin.    

Chelsea71
Posts: 1170
Joined: Sep 2012

Good luck with the avastin. What confuses me is last year Steve had a blood clot and went on blood thinners for six months. Throughout that time he was also on Folfiri and avastin. I don't understand what is different this time. Is it because there are numerous clots? I pointed this all out to the oncologist and asked what is different this time around. She didn't answer me, just said that she had to look into it.

herdizziness's picture
herdizziness
Posts: 3402
Joined: Apr 2010

Have any clots just the stent inserted in artery and they still wouldn't let me on Avastin.

criteria must be different for everyone I'm guessing.

coloCan
Posts: 1850
Joined: Oct 2009

which might be easier on your husband than infusiion directly into vein?

Chelsea71
Posts: 1170
Joined: Sep 2012

Because one of the clots is near the port, there is some concern that the clot may be absorbing some of the chemo and therefore preventing it from getting to where it needs to go. He goes for a portogram tomorrow. This will determine if the clot is soft or hard. If hard - great. This means it is not absorbing the chemo. Nothing will change. However, if soft, this means it is absorbing the chemo. If this turns out to be the case, then they will not use the portocath for his chemo infusions. Steve asked if a picc line would be started. The answer was no. (Steve did not ask why not!). She explained that he would get the chemo directly into his vein and would have to remain in the hospital for the entire three days! So, it seems like a picc line will not be happening but not sure as to why. Got the impression that it would be too dangerous because of the clots. But not sure. Will find out tomorrow. This whole clot saga seems never-ending. You guys must be so sick of me going on and on about these damn clots.

Chelsea

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 449
Joined: May 2012

I got my clot from a picc line. They probably think it is too risky for him to get one. I am still taking lovenox shots everyday - clot is still there - not as big - right upper arm - where picc was.
Good luck
Sandy :)

Mustangmania
Posts: 1
Joined: Jan 2013

Hi my husband has a history of blood clots and he got one in his leg during his chemo treatment he had only one treatment and then his legs and feet started swelling.  He was not eating or drinking much fluid and became dehydrated.  We had a follow up with the surgeon who had done his colonoscopy and they were concerned with how weak he was and that he was dehydrated.  I told them I wish they could just put him in the hospital and get some fluids in him and the surgeon made some calls and got him admitted right away.  He even walked him over to the hospital from his office in a wheel chair.  While in the hospital they did an ultrasound of his leg and found the blood clot.  He was previously on warfrin (pill) but they have now put him on Lovenox by injection everyday.  He is still receiving Avastin along with other chemo drugs.  His swelling has gone down.

Chelsea71
Posts: 1170
Joined: Sep 2012

How interesting! This must be something that varies depending on the individual situation. You may want to ask the onc about the avastin. I've heard from very reliable sources that this can be quite risky. Sorry that you and your husband are dealing with all this. Is he tolerating the chemo well? How are you holding up?

Chelsea

Lovekitties's picture
Lovekitties
Posts: 2942
Joined: Jan 2010

Avastin's roll in the formation of blood clots is known.

Here is info I pulled from the FDA site which lists approved meds and also shows approved labeling:

 

 On  the label  insert 11/20/2012 section 5.5 (not sure when this exactly was put on label)

 

 

Arterial Thromboembolic Events 154 Serious, sometimes fatal, arterial thromboembolic events (ATE) including cerebral infarction, 155 transient ischemic attacks, myocardial infarction, angina, and a variety of other ATE occurred at a 156 higher incidence in patients receiving Avastin compared to those in the control arm. Across 157 indications, the incidence of Grade  3 ATE in the Avastin containing arms was 2.6% compared to 158 0.8% in the control arms. Among patients receiving Avastin in combination with chemotherapy, the 159 risk of developing ATE during therapy was increased in patients with a history of arterial 160 thromboembolism, or age greater than 65 years. [See Use in Specific Populations (8.5).] 161 The safety of resumption of Avastin therapy after resolution of an ATE has not been studied. 162 Discontinue Avastin in patients who experience a severe ATE. [See Dosage and Administration

See the following for full insert info: http://www.accessdata.fda.gov/drugsatfda_docs/label/2012/125085s265lbl.pdf

Chelsea71
Posts: 1170
Joined: Sep 2012

Thank you, Marie.

Chelsea

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

Is known to cause congestive heart failure over extended use...though the informational drug pamphlet I read did not specify a time frame for that possible occurence.

I know I took it about 8-months or so...and I walked away with a tic in my heart from it that was not there before.  It's like trying to catch your breath and put your heart back in its proper rhythm...early on, it was very scary as you would breathe out and your heart felt like it was not going to contract....a real attention getter.

It's permanent...and I feel myself catching an extra breath throughout the day...and I'm sure into the night when I'm unconscious.

It definitely carries risks the longer you take it...should be considered a treatment option and not a lifestyle drug.

Chelsea71
Posts: 1170
Joined: Sep 2012

Maybe it's good that he is taking a break from it. Sounds like it really takes a toll on the body. Steve's onc said that the Avastin doesn't play that big a role in fighting the cancer. She says the 5fu is what is important. This confuses me because the 5fu has been used for forty years. There has been so much cc advancement attributed to these anti-angiogenic meds. People living for many more years etc. Didn't want Steve to miss out on such an important drug. Maybe it's for the best. He has had some protein in his urine lately, as well.

Chelsea

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

That's interesting what his doctor told you about the role of Avastin vs the role of 5fu. 

The whole premise behind it was the claim that Avastin "choked off" the blood supply to the tumor....but that's the key word...Tumor.

I was doing Folfox, Avastin and Xeloda at that time...after my liver surgery. Locally, we had eradicated the tumor with the open RFA and Cyberknife...then started chemo.

Looking back now, it seems that my onc was just giving that to me as a "preventative", since for that period of time, I had no visible tumor...

Avastin's role seems to be for tumors already present...and not just for systemic circulation in hopes of preventing rogue cells from forming by cutting off their blood supply.

I've often wondered if that drug helped me...I know it hurt me...forever...and in ways, I may not even realize what the true fallout could be, unless I get further down the road and experience it. I feel fortunate that my condition is not worse than what I have to live with now. 

Moot point for me, because I recurred again when it spread to the lungs...but I suspect that had much to do with my onc's (mis) managing of my case and the way he was adminstering my care.

I believe he was truly "practicing."  And I also don't think he looked to my future, because I suspect he figured I wasn't going to make it anyway.  They probably used some of their patients as 'experiments' to see how they might prescribe to another patient.

Only we were playing for keeps...

You know what really upsets me about the cancer fight, Chels?

"We have to trade THIS for THAT - While sacrificing TOMORROW for TODAY."

The decisions we make, or are made for us...have a lasting impression....because, they last the rest of our lives.

I wish it was not so...

P.S. Have his urine checked...Camptosar aka CPT-11 aka Irinotecan is notoriously hard on the renal system...and can be compromised...and in the worst case scenario...can fail.

Ron50 has reported urine protein issues....he did something early called Levamisole 48x...and it has haunted him.

My kidneys nearly failed 19 months ago when I was coming out of my last fight....I worried that a couple of more and I'd be cathetered for life. 

A break might be good...and perhaps, he could elect to continue it at a later time...wish I knew the answer there.

See ya':)

-c

coloCan
Posts: 1850
Joined: Oct 2009

Avastin has played for so many here.....While technical, this was just published yesterday

 

www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0051780

 

The impact of Bevacizumab (Avastin) on survival in Mertastatic solid tumors- a meta-analysis and systematic review"

(Suggest reading "Abstract", then "Discussion" part)

 

 

annalexandria's picture
annalexandria
Posts: 2254
Joined: Oct 2011

without visible tumors, Craig.  And that was the period in which I had a ton of tumor growth, so...not always the wonder drug that it seems to be, at least not for everyone.   AA

Chelsea71
Posts: 1170
Joined: Sep 2012

Yes, it will be interesting to see how it all plays out.  We're at the portograam appointment now.  (He cut his ear shaving and his blood is running so thin that we can't get the bleeding to stop.  This has added some extra drama to the day!). Hopefully the avastin is not ruled out forever.  Will ask the onc about the protein.  She hasn't yet brought it up.  I just noticed it with the bw results.  Didn't realize irenotecan was hard on kidneys too.  It is too bad so much has to be sacrificed in this battle.  For example, the swelling is now gone thanks to the dexamethasone but it comes with a price.  Irritability.  He's up one minute and down the next.  He recognizes it but can't control it.  Many trade offs.  

 

Chelsea

annalexandria's picture
annalexandria
Posts: 2254
Joined: Oct 2011

make sure that he doesn't stop taking them all at once, no matter how unpleasant they make him feel.  Stopping them without tapering can be disastrous on the system.  I hated being on steroids....made my heart feel like it was going to beat its way out of my chest.

Chelsea71
Posts: 1170
Joined: Sep 2012

He's on 4 mg a day. 2 mg in the am and 2 mg in the pm. The side effects are not pleasant. Irritability (Possibly a bit depressed. Unusual for him as he is always upbeat and chipper), can't sleep, constant hunger. I'm hoping he won't be on them for long, however, the onc gave him 9 refills. This strikes me as odd as she was very hesitant to prescribe them in the first place. Thanks for the advice about tapering. I've heard they can be har to get off of.

Chelsea

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