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Avastin & Abraxane - Anyone Else?

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CalGal View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CalGal Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2008 at 12:33pm
Hello Everyone!

Got my PET/CT back after 2 cycles (6 treatments total) of the A & A (and one Zometa)   While thankful and relieved that the bc mets haven't gone anywhere else, my onc described the scan as "basically stable with some slight progression".  Some mets were stable though.

I also have to consider that prior to this regiment, I had quite a bit of progression.   So, I'm looking at it like the A & A had to stop that - and that next time there will be shrinkage.

My onc and I were discussing options.   I suggested adding Gemzar to the mix - and he immediately liked that idea!   Yesterday, I had my first A, A & G.  I am so fatigued!   My head felt weird last night, but that's almost gone now.   I also noticed some whiteheads - obviously not disabling, but still ... (I've struggled skin problems almost all of my life).

Barb -
You had a lot of Taxol & Avastin.   While I never had Taxol, I've had Taxotere.   You're right, not having to have the steriod Dex, makes Abraxane a lot more attactive IMO.  More on the cold packs below.

Leo the Lion -
So glad your brain mets were successfully treated!  Would Avastin be a later option once you're further out from the gamma knife - or does a history of brain mets prevent one from using Avastin?   I agree that "looking better makes you feel better" - the more positive version of "looking like crap makes you feel worse!" Wink 

I'm a huge fan of the hypothermia products.   I went thru the trauma of hair loss during AC.   After a break for RFA of my liver mets (ended up being gone for 20 mos!), I had very short hair, and was more comfortable with that than wigs - and the thought of starting over bald was distressing.

While doing Taxotere & Carboplatin 8/06 - 11/06, I used the hypothermia cap, gloves and booties.   My hair continued to grow!  I never had neuropothy or nail-lifting (and while not everyone gets that, my mom got it during her bc fight).

Since starting A & A, I'm back using the products.  Avastin causes hair thinning, Abraxane causes hair loss and Gemzar causes hair thinning.   I have had some hair thinning, but my hair still looks normal!   On the day I got Avastin solo (my counts were off, so I didn't get the Abraxane) and Avastin doesn't require a pre-med, so I didn't put the cap on 15 min before treatment. The following 2 wks, I had an uncomfortable amount of hair on my comb.

The products aren't fun, but since they've worked for me so far, they're worth it!   You put the products on 15 min before treatment and keep them on during and 15 min afterwards.  The caps are good for 30 min, the gloves & booties 45 min.  I have 3 caps, 2 prs of the others.   The night before treatment, I take them out of the freezer (been in for almost a day) and put them in a wheeled cooler packed with 25 lbs of dry ice.   The dry ice has been broken into pcs 4-6 inches and wrapped in newspaper.    Gloves are a must.   You need someone to do the changes for you.  My DH has become a pro at it!Smile

Unfortunately, the caps come in one size.   The woman in the photo on their website must have a small head!   For me, the elastogel lining of the caps doesn't quite reach all of my hair - the temple to ear area closest to the side of my face - and that's where I have some hair thinning, but still, it's not bald.   I consider that proof that the caps are working.  I just hope that adding Gemzar to the mix won't change the effectiveness of the caps.

For a look at the products go Southwest Technology's website at www.elastogel.com/cancer_support.htm

If you have any questions, let me know.   Also, I'd call all the distributors, since I did that back in summer 2006 - and there was quite a variation on the cost.  Don't know if it's still this way, but there was no sales tax in KS where the products are made!

Best to all,

CalGal




BRCA1
9/04 Bi-lat lump, clear SNB
38x Rad'tn
12/05 Recurr bc & mets to liver
06 the year of chemo
NED for 13 mos until 7/07
Lung met. PARP trial until ...
2/08 Liver mets again
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Nancy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2008 at 1:04pm
Hi there Sweetheart,
 
Now that's what I call "taking control"!! You tell the onc what you need. If it were not for your research on what is best for YOU,  and what you feel might work for YOU, what do you think they would have gone with?
 
I am absolutely amazed at the strength you have, and also so many of the other women on this site. I bet that the docs wish sometimes that the internet and all the information you can find, was not available to the public.
 
You must have an incredible onc.Clap tell him for me that I applaud him.Clap
hugs,
Nancy
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BrendaF Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2008 at 1:36pm
CalGal, I agree with Nancy, you're something else!  It's too bad you have to have the onc to write the orders, you're doing all the thinking.  Do you have scans again in three months, or earlier since you're changing the mix?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote aaklwalker Quote  Post ReplyReply Direct Link To This Post Posted: Jul 19 2008 at 9:53am
CalGal, sounds like you are making the best of the situation.  And you have a great doctor, too.  How are you doing with the Gemzar?  I am on A&A too, starting my third round and tumors are stable, first time I have made it to 3 rounds of any treatment (sounds like a gameshow, doesn't it?).  I am sleeping 12 hours a day, but have great energy otherwise.  Side effects are nominal considering the results.  Hope all continues to go well for you.
Dx 1/06; Lt Rad mast 3/06; Reoccurrence rt lung; stage IV 1/07
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CalGal View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CalGal Quote  Post ReplyReply Direct Link To This Post Posted: Jul 20 2008 at 7:26am
Thanks Nancy & Brenda! Smile

AAklwalker -

Congratulations on being stable!  Glad you made it to the 3rd round!   Sounds like sports play-offs to me!   I had my first Gemzar on 7/15 (with A & A) and it kicked my butt in terms of fatigue!  

Despite all of my chemo treatments, I've been strong and energetic in the morning (been a very energetic & morning person all my life), and fade early, but NOT on the Gemzar!   Slow, sluggish, tired from the start.  Wed it was all I could do to get it together to meet a girlfriend for dinner.   Th & F were better, but still slow. 

Yesterday, Saturday, was even better.   As I had a fun extended family get-together at night, I took a 2 hr nap (first one I didn't feel that I needed) and then had an espresso drink!   I stayed up until 1:00 am with that combo (nap & late espresso drink)!  Smile  I'm hoping I'll be up for the gym today (they're not open yet) & tomorrow!

However, I'm very fortunate that besides the fatigue, I don't really have any major SE from the long list of them for each drug!   A little nausea, but eating usually makes that go away.

I'm hoping that I won't be so tired after the next combo with Gemzar, but am afraid the SE will be cumulative.  

CalGal
BRCA1
9/04 Bi-lat lump, clear SNB
38x Rad'tn
12/05 Recurr bc & mets to liver
06 the year of chemo
NED for 13 mos until 7/07
Lung met. PARP trial until ...
2/08 Liver mets again
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LTrev Quote  Post ReplyReply Direct Link To This Post Posted: Jul 25 2008 at 8:30am
I was on taxotere and it was doing nothing.  They changed me to Abraxaine an it was amazing how I could actually feel the tumor shrining within two treatments.  (I had already lost my hair, and the neuropathy did effect my fingers and toes.  Feeling has returned to my toes, and most of the feelings have returned to my fingers.)
 
Best of Luck
 
LTREV 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote aaklwalker Quote  Post ReplyReply Direct Link To This Post Posted: Jul 25 2008 at 10:18am
CalGal, how often do you get the Gemzar?  Still feeling pretty well?  I have to be off chemo for six weeks so I can have some dental work done - thinking about asking to go back  on A&A plus Gemzar.
Dx 1/06; Lt Rad mast 3/06; Reoccurrence rt lung; stage IV 1/07
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Barb T. Quote  Post ReplyReply Direct Link To This Post Posted: Jul 30 2008 at 5:46am
I'm just starting Abraxane because of allergic reaction to Taxol.  My onc warned me it was expensive.  I'm already on Avastin.  Has anyone had problems with their insurance paying for both?

Thanks.

Barb T.

1st bc 3/03
New bc 2/06 with
Mets to liver/chest/lymph nodes
Avastin/Taxol
Avastin/Abraxane - 7/08
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Post Options Post Options   Thanks (0) Thanks(0)   Quote thinkpositive Quote  Post ReplyReply Direct Link To This Post Posted: Jul 30 2008 at 6:46am
Smile   I have had 18 A&A treatments so far this year and the insurance company has paid for them with no real issues.    It is working for me.   I had 4 lesions on my lungs when I had my PET scan in January.    Just got the results from my latest scan yesterday and it is working.   I am down to one lesion that is 10MM x 8 MM,   it was 15 x 9 on the PET scan two months ago.   Hope you get the same results.  
dx 3/06 stg II 0/7 lymph
bilateral mastectomy 7/06 AC/Taxol lung mets 1/08 Avastin Abraxene 02/08/9/08
Brca neg Avastin Xeloda 10/08
Curagen 2/09 Ixempra 6/09 Lung Mets
Gemzar/ Carboplatin 9/09
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Barb T. View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Barb T. Quote  Post ReplyReply Direct Link To This Post Posted: Jul 30 2008 at 9:33am
Thanks for the input re: insurance.  I'm so happy to hear how well A&A is working for you.  I truly hope I get the same results.  As your 'name' says, think positive!

Barb T.

1st bc 3/03
New bc 2/06 with
Mets to liver/chest/lymph nodes
Avastin/Taxol
Avastin/Abraxane - 7/08
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CalGal Quote  Post ReplyReply Direct Link To This Post Posted: Jul 30 2008 at 11:13am
Hi Everyone -

ThinkPositive -
18 A & A's?!  That's a lot ... but so worth it with your great result of 4 lung mets going to 1, and that one shrinking.  Hooray!

LTrev -
Glad you were able to switch to Abraxane.  I like it much better than Taxotere, due to not having to take than darn steriod Dex.

What do you meam by "feeling the tumor shrinking"?  How and where did you feel it?  (When I was on dd AC, I could TELL after one treatment that it was shrinking my fast growing tumor, but I could not FEEL that).

Aaklwalker -
Wow, 12 hours of sleep per day?  How often is your A & A?  You mention a 6 wk break and then you may add Gemzar.   For me, adding the Gemzar really bumped up my fatigue!  Throughout all of this, I've usually had good energy first thing - and it fades; but after adding the Gemzar, I don't have my usual morning energy.  Although, the only day I get 12 hours of sleep is the day of treatment!

My treatment schedule:

Day 1 - Abraxane, Gemzar, Avastin
Day 8 - Abraxane, Gemzar, Zometa
Day 15 - Abraxane, Gemzar, Avastin
Day 22 - OFF!!

My first post-adding Gemzar scan will be the week of Labor Day.  I'm hoping this is making a big difference, but I don't know.

Barb T -
Glad you're on Abraxane instead of Taxol.  No steriod!!  I have not had any problems with my insurance company paying for A & A (and I know Taxol is the more common pairing with Avastin).   However, Avastin is the big ticket drug (at about $10,000 per dose!) rather than Abraxane.

Hope this A & A (plus whatever else) works for all of us!

CalGal
BRCA1
9/04 Bi-lat lump, clear SNB
38x Rad'tn
12/05 Recurr bc & mets to liver
06 the year of chemo
NED for 13 mos until 7/07
Lung met. PARP trial until ...
2/08 Liver mets again
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Jul 30 2008 at 11:46am
CalGal,
 
Avastin at $10,000 per dose??????????????? OMG!!!!Are the pharmaceuticals getting fat on this or what???????????Angry
 
No wonder they don't find a cause or cure! No money coming in then.
 
Do you have a cap on treatments/dx with the insurance company?
 
I am just happy that this is working for you and apparently many others.Clap
Hugs,
Nancy
 
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote JulieG Quote  Post ReplyReply Direct Link To This Post Posted: Jul 30 2008 at 1:18pm
Hi Y'all, I been reading all the posts and am so glad people are having positive results on the A&A treatments.  I had my first A&A treatment 3 weeks ago and my tumors are visibly shrinking.  I don't know if it's due to the A&A or the radiation or a combo of both.  Probably the combo.
 
I know all the chemo treatments are expensive but remember these are not drugs like tylenol that have millions of people buying them.  Compared to that there are relatively few people taking these chemo drugs and all that money goes to the research and development of these drugs and hopefully, even better drugs that will cure cancer.  I know too that the drug companies do make a lot of money but as long as they are using a large portion to fund research for a cure I am not complaining.  Please do not think I am fussing or don't cringe everytime the medical bills come in (I am a single working mom.)  I just am stating my view. 
 
On a positive note, I've been accepted for cyberknife on my liver!!!  My tumor on my liver is now 5 cm x 4 cm and is starting to cause pressure to my stomach area.  Cyberknife is kind of like Gamma Ray but better.  I so hope it works.
 
JulieG
Dx 2/07 TN
Mastec Lft Brst, 11 lym node
Cytoxin/Taxotere 6mth biwkly
Mets to lung, liver and lymph nodes 12/07
Ixempra/Avastin/Xeloda 6mths
Rad x14
Avastin/Abraxene every 21 days
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CalGal Quote  Post ReplyReply Direct Link To This Post Posted: Jul 30 2008 at 2:46pm
Julie G -

Hooray - that you've been accepted for cyber knife for your liver mets!!!

HOW DID YOU GET APPROVAL FOR CYBERKNIFE WITH METS IN MORE THAN ONE LOCATION?!   Did you beg, did your onc offer?!

Although I've had RFA twice before, that was when my bc mets were only in my liver (and later on a likely primary of kidney cancer).   Last week, my onc agreed to my request for a referral to my interventional radiologist for a consult for RFA again, but my onc said RFA would not happen due to my mets being in more than one location!

Do you mind telling us (or pm'g me) as to where you get treated?

If I can't get specific treatment on my mets here (and I'd love to go after each one - I don't care if it technically doesn't extend survival - I think it would help!)  and I'm willing to travel for medical care!

Thanks

Nancy -

Yeah, that Avastin could make a big dent in lifetime insurance coverage - if it's working (and you stay on it a long time).  While I have a $1 M cap on my current insurance, I believe that later this year, I'll get a disability retirement and thus, will have to change insurance.   Quite frankly, that scares me as that insurance co denied two friends of mine who were on Avastin.   Both fought the insurance company (denied twice) and then appealed to the state (of CA) and that appeal was overturned.  Of course that was very stressful for them and took a lot of energy for women battling bc mets for their lives.

Additionally, I will likely end up on Medicare too (due to the disability, not age).  So, I have no idea how that will work either.

On the positive side, while I won't get near $1 on any insurance company for a while, regardless of how long I'm on Avastin!

CalGal
BRCA1
9/04 Bi-lat lump, clear SNB
38x Rad'tn
12/05 Recurr bc & mets to liver
06 the year of chemo
NED for 13 mos until 7/07
Lung met. PARP trial until ...
2/08 Liver mets again
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Barb T. Quote  Post ReplyReply Direct Link To This Post Posted: Jul 30 2008 at 5:43pm
Julie G,
Glad to hear you've been accepted for cyberknife.  Will be interested in hearing how it goes for you.  Good luck!

CalGal,
I, too, am on disability.  I am suppose to go on Medicare beginning Aug. 1.  I'm really nervous about it.  Hopefully I won't have any problems with getting both Avastin & Abraxane.  Did talk to the office manager at my onc's office and she didn't think there would be a problem, at least not with the Avastin.  I talked to her before I started Abraxane.  I'll keep you posted on how it all goes.
Barb T.

1st bc 3/03
New bc 2/06 with
Mets to liver/chest/lymph nodes
Avastin/Taxol
Avastin/Abraxane - 7/08
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Post Options Post Options   Thanks (0) Thanks(0)   Quote JulieG Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2008 at 1:37pm

CalGal-

My onc offered cyberknife.  He actually wanted me to have it on my lymph node and the radiation onc said he did not want to do it on a lymph node as that tumor is not life threatening.  So he has been treating me with high dose radiation on my lymph node and lung.  He has also said he may do cyberknife on my lung if the radiation did not get rid of it.  When I told my onc that I was starting to feel pressure from the liver met he immediately called the radiation onc and gave him the go ahead for the cyberknife.  My onc is wonderful and very agressive with my treatments.  He also is very spiritual and truly believes in the power of prayer.  He says he has seen too many miracles not to and he is only an instrument of God.  He teaches at MD Anderson and really keeps up-to-date on all the new treatments.  He has also written papers on different types of cancer.  My rad tech guys say he gives lectures on cancer to proffessionals and they have gone.  They say he is a walking encyclopedia of cancer and other oncs really look up to him.  I live in a small southern town in Louisiana about 25 miles south of Lafayette, LA (pop. approx. 200,000) where he practices.  He has his own practice there.  I will PM you with his name just because I don't want to put his name on the internet without his permission.  The place where I am treated for cyberknife is Lafayette General Medical Center, just a regular hospital not a premier cancer center but it is affiliated with MD Anderson in Houston.  My radiation onc feels that at the point I am with cancer what can doing cyberknife hurt and maybe, just maybe it will work.  I sure hope so. 

JulieG

Dx 2/07 TN
Mastec Lft Brst, 11 lym node
Cytoxin/Taxotere 6mth biwkly
Mets to lung, liver and lymph nodes 12/07
Ixempra/Avastin/Xeloda 6mths
Rad x14
Avastin/Abraxene every 21 days
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Post Options Post Options   Thanks (0) Thanks(0)   Quote another nancy Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2008 at 3:35pm
I am currently getting A&A.  I am currently in my third cycle, third treatment.  My tumor markers have returned to normal and I will have a PET/CT on Monday to assure no further spread.  I did not have cancer in any major organs(lung, liver, brain, bone) only to my lymph nodes in subclavicular area and mediastinum.  My insurance has been covering all of the treaments also.  If all is clear, I will 1-3 more cycles then radiation.  My onc said they she wants to do maintanence avastin (kinda like how they do herceptin in HER+ BC) afterwards.  I have never heard of this.  Is anyone doing this??  My sde effects are minimal compared to the A/C.  (Bloody nose and constipation)  No nausea at all.
 
How long do they wait to start radiation after chemo?
 
Another Nancy
 
Age 43
DX:  1/08  Stage 3B
Neoadjuvent chemo 2/08  A/C
Mastectomy 4/08
A&A 5/08
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote thinkpositive Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2008 at 3:48pm
I am on my 7th cycle of A&A for metastic bc in my lungs.  Latest PET shows continued improvement with 3 of 4 lesions gone and the last one visibly smaller.   My oncologist expects to do at least one more cycle after this and has mentioned maintenence avastin after that. 
 
I did not have radiation so I am not sure how long between treatments.
 
Good luck with your treatments  Glad to hear it is working for you too. 
dx 3/06 stg II 0/7 lymph
bilateral mastectomy 7/06 AC/Taxol lung mets 1/08 Avastin Abraxene 02/08/9/08
Brca neg Avastin Xeloda 10/08
Curagen 2/09 Ixempra 6/09 Lung Mets
Gemzar/ Carboplatin 9/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote aaklwalker Quote  Post ReplyReply Direct Link To This Post Posted: Aug 03 2008 at 3:40pm
It is so good to hear so much good news from this treatment combo.  Please keep us posted as you go and I will be praying that our doctors can make this a primary treatment and maybe prevent mets for some earlier detected bc patients. 
Dx 1/06; Lt Rad mast 3/06; Reoccurrence rt lung; stage IV 1/07
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: Aug 06 2008 at 4:38am
As I may have mentioned, I'm now on a maintenance dose of Avastin and Erbitux every 3 weeks.  We had to skip the Avastin last round because of the side effects -- I was having some internal bleeding in my gastric path.  It was so nice to be off it for the three weeks and not have to worry about bleeding gums and painful poops.  But, I'm happy to be starting on it again today because I am pretty sure that it's very helpful.
 
Cheers,
Caryn
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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