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ladylake88 View Drop Down
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    Posted: Dec 08 2010 at 2:13pm
Hi! It has been a long time since I have posted here. I was on the drug Avastin until March of this year when I developed over 20 blood clots in each lung from the drug. My BC had gone to my skin. It has since been pulled for the use in BC by the FDA in July, based on the fact that they found it ineffective in the treatment. There is a law firm in LA that has started a class action law suit against Roche for any one that took Avastin. The goal is to get everyone's $ back that they spent on this drug. I have spoken to the senior partner about this suit many times and if any one is interested in joining, please let me know and I can provide you with all of the contact details. They will send you a form to release your medical records to the firm. My onc. is behind me 100% in this lawsuit. I spent a sizeable amount of $ on this drug last year and would like to get my $ back, especially with all the hell it put me thru. There is a lot of info on the internet about Avastin and the FDA. Would love to hear from anyone that took this drug. Hope the New Year is a better one for All!Star
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 08 2010 at 2:18pm
LadyLake88,
I had to sign a waiver to sue when I signed up for the Avastin study and I'm sure you did, too.  I was fortunate that I had no problems with it.  But I wouldn't be suing anyway.  I wanted to participate to further knowledge with the use of Avastin.  If I would have been hurt by it, that was the risk I was willing to take.  I'm sorry that you had such severe problems.  Loads of lawyers love to file class action lawsuits to line their pockets.  They are called "ambulance chasers."
Lee in Denver
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote hummingbird10 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 08 2010 at 2:36pm
Lee,
I just found out that I have been receiving Avastin in the clinical trial and that I'm in
Arm C which means I can go to Arm D for 10 more treatments.  From what I've read
about the trial I'm in (which is for non-mets in stages up to IIIA) they will not know
affects for another 3 or 4 years.  We are all contributing to the body of science, no
guarantees as the researchers are working in uncharted territory as well.  I'm going
for the next Arm and feel that I was fortunate to be in that 40% group who has
it available.  The FDA is looking at the $$$$, IMHO.
 
Hummie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 08 2010 at 2:58pm
Hummie,
I was in the Arm which ended with my ACT.  I wouldn't even have known I was on it!  I would have sworn I was on the placebo because I had no common side effects.  Whatever my efforts add to the total picture, I was happy to do it.  If not for my benefit, then for those that come after me. It didn't cost me anything to be in the study.  The company paid for it.  I did have to pay co-pays for the MUGA's, but so what!  I would have been happy to have been  in your Arm.
Lee in Denver
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote hummingbird10 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 08 2010 at 3:25pm
Lee,
I thought I was on the placebo, too. Only side effect was a slight bloody tinge in the morning
while blowing my nose---I thought it was my on-going Midwest sinus belt issue.  So, I'm happy
that there IS research going on that might benefit each and all, now and in the future.
If there weren't participants there would not be any clinical trials and no research.
Just think about that!
Hummie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 08 2010 at 3:34pm
Hummie,
My sentiments exactly!  I was happy to help in whatever way I could.
Lee in Denver
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TysMom Quote  Post ReplyReply Direct Link To This Post Posted: Dec 08 2010 at 4:33pm
I was in an Avastin trial and was happy to do it.  Even though I had a daily bloody nose and my bp went up I feel it was worth it.  Everyone responds to drugs differently.  I would never consider a lawsuit, this country is lawsuit happy imo.  I am sure that possible side effects and complications are explained before any drug is given, it a risk that you take.
44 at dx
TN IDC Gr3/St 3 1/17 nodes+
5cm tumor removed 3/12/10
Taxol weekly for 12 weeks FINISHED 7/21/10
9 Avastin FINISHED 9/1/10
DD A/C 4 tx-FINISHED 9/15/10
BI-MX 10/6/10
BRCA 1/2 neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote overwhelmed Quote  Post ReplyReply Direct Link To This Post Posted: Dec 08 2010 at 5:05pm
I am in a Phase 3 study and was randomized into the Avastin arm of the study.  It's my understanding the FDA hasn't pulled it's approval and will revisit the matter later this month.  At any rate, with the "controversy" over Avastin I have at times questioned if I should have taken another route.  But, since we are basically the first wave of phase 3 trials on early breast cancer, there is no real way to know at this point whether or not Avastin works for those whose cancer hasn't spread.  I have had minimal side effects (I almost forget that I am still getting chemo), although I know there can be serious side effects which my onc spelled out for me in the very beginning.  I, too, signed a waiver to get into the study and those side effects were again pointed out.  At any rate, I take comfort in knowing that I am taking part in a study that could ultimately determine which way to go to treat this beast.
 
As with so much with treatment, I have mixed feelings about the accelerated approval of drugs.  Avastin did show good results in treating stage 4 bc back in 2008, but the later studies didn't back up the earlier studies.   It's my understanding that theParp Inhibitors may also have an accelerated approval by the FDA with the need for follow-up studies (I could be wrong, but I believe this is what I've read).  I see so many ladies on this site waiting for the approval of the Parp inhibitors.  Not all are able to get into trials to get the drug they hope will save their life.  I would like to see the Parp Inhibitors approved yesterday because they do show promise.  I have also seen ladies on this site who have gotten good results from Avastin. 
 
Ladylake, I am sorry to hear you've had such serious side effects.  I do wish you success.  I know that Avastin is expensive, and it would be very frustating to spend a lot of money on a drug that didn't work for you.  I don't know the answer when it comes to these new drugs.  I do think they need to be studied with the hope that it is the magic bullet.
 
 

 

 

DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Dec 09 2010 at 9:22pm
Ladylake:
 
I am sorry you have had such a terrible time with the Avastin.  It must be disheartening to know that it caused so many SE's. 
 
It is true, we are on the cutting edge for the TNBC people in this world, so we have to be the ones to take the risks along with the researchers who are trying desperately to find the answers.  I know Avastin works for Macular Degeneration and colon cancer, but I am stumped why it won't work for TNBC??? Maybe there is some adjustment they can make to make it work. 
 
We are all here one day at a time and if we can extend this time through medication then so be it, whatever the consequences.  We cannot think about holding manufacturers/researchers accountable for SE that we know may happen, we all react differently and we are all in the same boat - wanting to have that magic bullet!
 
Take care and I bless all who are working toward a better life for all of us.
Helen in NS
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote HappyGoLucky Quote  Post ReplyReply Direct Link To This Post Posted: Dec 10 2010 at 1:02pm
Dear ladylake88
 
I was in phase iii of the clinical trial. Suffered with the usual avastin se  until my muga scan numbers went down down down. I could see the worry in their eyes and I gulped really hard as I went to a cardiologist for the nuclear stress test and was in surgery  month later for the catherization. Long story short, my heart has been damaged but not to the extent of heart attack. The walls have been damaged, they don't know if avastin and adriamycin could have been the culprits as I was ICU for my lungs also. Lot of blood but no clots.
 
Im thinking about pursuing this on a legal level. Guinea pig is one thing, heart permanently damaged is quite another. IDK
 
 
Karen
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Post Options Post Options   Thanks (0) Thanks(0)   Quote overwhelmed Quote  Post ReplyReply Direct Link To This Post Posted: Dec 10 2010 at 1:43pm
 Dear Karen,
It's my understanding that Adriamycin can cause heart issues.  I am not sure about Avastin, but I know that I had an Echo before I went into the Avastin trial to make sure my heart was strong enough.  This trial also has an Adriamycin arm, so I am not sure which drug the Echo was for.
 
I'm sorry to hear that you've had these issues.  I know that I have been fortunate so far since I've just had the aggravating side effects, but nothing serious.  I would imagine I am in the majority, but occassionally these drugs do cause serious side effects.  They are toxic, and each of us has a different body chemistry.
 
Good luck to you. 
 
DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ladylake88 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2011 at 10:10pm
Dear Karen, After much research about this drug and its accelerated approval by the FDA, I learned that one of the side affects is heart damage. The law firm that is handling the class action suit is in LA and they are on the internet. I think it is www.pbc.com. I have just sent my paperwork in to them and have spoken to the senior partner handling this many times. I had no family or friends to bounce this off of, so it took me a while to make that decision. I think after reading all about Avastin and its accelerated approval before the 1st clinical trial was completed pushed me over the edge. The FDA wanted so badly to get a drug out there that would help us. If it did help some, God Bless them. A large group of oncologists studied the info and decided that the side affects were so serious and there was no real data to suggest that it was effective. The oncs can still prescribe it using their best judgement on a case by case basis. Just had my PET scan Mon. and they are calling me back in tomorrow to have a repeat as the radiologist said it looked like I had eaten before the test and I hadn't. Been having major stomach problems lately, but my GI Dr. wanted to wait and see what the PET said before he would know what tests to preform. I have lost so much weight that you can now see all of the ribs in my rib cage. Always something. God Bless everyone.Star
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Jan 05 2011 at 1:18am
How sad and confusing this all is. I am sorry to read your story ladylake. And on the otherhand there are those that avastin has truly helped and are crying out for their lives if it gets taken away. This is truly a conundrum.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote HappyGoLucky Quote  Post ReplyReply Direct Link To This Post Posted: Jan 05 2011 at 12:44pm
Hi Ladies
Ladylake you must be felling apprenhensive, I pray that all it will be is nothing to worry about. Losing weight like tho is of concern. PLease let us know how u are doing.
 
 
My oncologists were very hopeful that avastin would be the great cure for non mets bc and convinced me to sign. Just the waiver scared me very much.
Just getting the nerve to sign up for the trial  for avastin trial took me a while to do. I was being urged by the onc team to do it and apparently my heart had no defects that would have made it unfavorable to participate in the trial phase 3. Treatment for me came to a halt in Oct 2009 .
 
Today I feel fortunate that I didn't have a blockage as seen in the catherization or a heart attack as feared.  I thought I was a goner.  Its all very confusing to me. My docs have poker faces and the one who saw me last was the cardiologist. Heart function is not as strong but I have to make it stronger.  I am even giving up my car so I can walk everywhere. (in the city its really a good thing)
 
Only bad thing is I now have to be vigiliant about sore throats and lung pneumonia and bronchitis. Xmas the whole family had type a flu and I am still sick.
 
Praying for you  ladylake. May we get thru this too.
 
Love,
Karen
 


Edited by HappyGoLucky - Jan 05 2011 at 1:29pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 05 2011 at 4:21pm
Ladylake,
I take it that you weren't on a study when you took Avastin?  The risks were  spelled out clearly in all the papers I had to sign for the trial.  I was nervous about the side effects, but more nervous about dying of breast cancer.  I had a dip in heart function but it has come back up to normal now.  I'm sorry that you are losing so much weight.  I could afford to lose the weight I did.  Praying that the problems you are having are figured out so your weight loss can stabilize.
Lee in Denver
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote HappyGoLucky Quote  Post ReplyReply Direct Link To This Post Posted: Jan 06 2011 at 2:32pm
Ladylake how are you feeling? I have been thinking about all you've been thru and hoope that its clear sailing fro you now.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ladylake88 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 09 2011 at 6:15pm
Hi, I wasn't a part of any clinical Trial when I took Avastin. I did get a 2nd opinion from another onc. as to what was the best drug at the time to help me with my skin mets. She said Avastin & Zeloda. So that is what my 1st onc. used. I was given a fact sheet about both drugs and read what I could on the internet. After the blood clots, I obtaintain a drug from Germany that helped with the skin mets, but they eventually were removed. I found that the best way to get rid of them is to have them surgically removed. My surgeon was doing punch biopsies on them, which can leave cancer cells behind. The good news is my PET scan came back unchanged from the one in Sept. I was thrilled. So I just have to have my thyroid goiter checked out and my stomach issue and maybe I can start gaining some weight again when these issues are dealt with. So glad that I am still in remission. They want me to go to Physical Therapy to build up my chest wall muscles and my left arm muscle as I get Lymphodema doing nothing. For all of those out there afraid that they can not get Avastin, it will still be available for use. It will just be a judgement call on the oncs part. The FDA is still willing to work with Roche and Roche has filed an appeal. God Bless Everyone.Star
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Jan 10 2011 at 12:35am
Congrats on having such great success with treatment, especially local removal!  Wow, I think a lot of people don't have their skin mets surgically removed, and maybe they should.  How wonderful that you have remained NED.  I'm thrilled for you!
love,
d
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katastrophe Quote  Post ReplyReply Direct Link To This Post Posted: Jan 10 2011 at 4:44am
Age 49. Stg2 gr3 19mm lump in L/br 1 lymph node in L/br 3/14 lymph nod under left arm full clear bil/mast 6rds Chemo 3wkly 25rds Rad 18rds of Avastin finished treatment on 19th August 10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ladylake88 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 10 2011 at 3:40pm
Hi,
I didn't know that they were to be surgically removed. My surgeon was doing punch biopsies on them using the smallest punch, which could leave cancer cells behind. I applied this topical lotion from Baxter Oncolgy in Germany and it seemed to shrink most of them. The last one that was removed was in 8/10 (it had become resistant to the lotion) and I asked my surgeon to use a larger punch so we could get clear margins on it and she did. It came back invasive carcinoma. Then I spoke with a nurse at the hospital that had skin mets and she told me her surgeon (now retired) surgically removed all of hers and she has now been cancer free for 18 yrs. Skin mets can be hard to control, so I feel very blessed right now that I do not have any new ones. In the future I am going to ask my surgeon to surgically remove any new ones to get clear margins. My 35 rds of rad and the chemo drugs did nothing to shrink them at all. Will start PT next week for the chest wall muscles and the constant Lymphodema (sp?). Had a double in 08 after the lumpectomy and chemo and was filled with cancer. So I was glad to have them removed. What was a 1.5 cm tumor ending up being all thru. They should have removed it right away when the cancer showed up in an MRI before I even started chemo. My Dad always said MD does not stand for Medical Deity (sp?)Star
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