Avastin & Abraxane - Anyone Else?
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Topic: Avastin & Abraxane - Anyone Else?
Posted By: CalGal
Subject: Avastin & Abraxane - Anyone Else?
Date Posted: May 26 2008 at 11:58am
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Hello All - After the PARP Inhibitor trial worked for 6 months and then failed, I tried a "trial of one" which included Carboplatin (again). Unfortunately, it did not work at all. That word "Progression" is so ironic ... ugh, more mets ... My DH and I were really devastated ... We really thought my combo would work and there was some good science behind it ... I haven't posted much until I figured out my treatment (although I've been on the boards, in particular reading your posts about the A-A combo and Ixempra combos). I've been doing a lot of research, including a 2nd opinion - and I know you all know how that goes with gathering up records (even though I keep a full set at home - it needed to be organized and updated!) I've just started the Avastin (wks 1 & 3) and Abraxane (wks 1, 2 & 3) combo, with week 4 off. Tomorrow, Tu 5/27 is wk 2, so it's Abraxane solo. I managed to get in and see a thoracic surgeon super-quick and he gave me the quickest response possible, in terms of "next work day" scheduling, so from the Fri appt to the post-Memorial Day weekend, I will get a portacath installed tomorrow morning, before the Abraxane! I've held out (not getting a port) a long time ... and with this more frequent regimen, decided it was time. This surgeon was also reassuring about the port not interfering with work-outs! So good-bye needle-sticks (except for PET/CT's)!!! Are any of you on Avastin & Abraxane? If so, how is it going? Have you had scans yet? How are the SE's? Any tips on dealing with SE's from this A-A combo? Once again, my DH is leading the "Save
the Hair and Prevent Neuropothy & Nail-lifting Campaign" by using
the hypothermia products (caps, gloves & booties) on me. So far,
so good! They worked in the past, with my post-AC very short hair,
while using Taxotere & Carboplatin, and more recently, Carboplatin
again. My hair is finally back to where I like it and it feels like
me, so I'm doing everything I can to keep it! I'm just trying to stay as normal as possible ... After one cycle, I'm doing really well. I know the effects tend to be cumulative, so I'm wondering ... Thanks for any input! CalGal Trip Neg, BRCA1, Dx'd 9/04; Mets Dx'd 12/05
------------- 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 |
Replies:
Posted By: trip2
Date Posted: May 26 2008 at 1:11pm
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CalGal I have no experience to answer your question but out here routing for you all the way that this works for you. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Nancy
Date Posted: May 26 2008 at 1:20pm
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Hi Cal Gal,
So sorry to hear you have to go through this again. Hard to believe that you have not had a port. Lori did not have one, but you have been through many more treatments. I can well imagine the devastation you and your hubby are expereincing. You have been through more than one person should have to experience in a lifetime of 80 or 90 years.
When you have cancer, even one hour of feeling great could be interpreted as "normal".
You must have some pretty amazing docs. Sounds like they are really looking out for you. I will be thinking only good thoughts for you.
Hugs,
Nancy
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Posted By: thinkpositive
Date Posted: May 27 2008 at 2:22pm
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I am on A & A since Feb 08. First diagnosed in March 06 and lung mets in Jan 08. Side effects are definitely better than previous chemo treatment of AC & Taxol. Don't have the stamina I would like but still working pretty much full time and able to cope. I do have a question for those on this regimen since I don't know if it is a side effect or just coincidence. I am experiencing a sore throat and cough. My GP diagnosed reflux and I have been taking Protonix - I also have some congestion and the nose bleed symptoms others have mentioned. I wondered if anyone else has experienced these side effects. It is going on 4 weeks - am I missing something?------------- 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 |
Posted By: CarynRose
Date Posted: May 27 2008 at 3:37pm
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Dear Think,
I had that too. As a matter of fact, I still get a very dry throat/soreness occasionally. My ENT also felt that it was from reflux and gave me Protonix.
As far as the nosebleed goes, the ENT recommended saline nasal spray several times a day to keep the membranes and scabs soft. That way they can stay ON the irritated area and allow healing. Once they heal, he suggested that I start using a Nettipot to keep my nasal and sinus passages clear and moist.
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 |
Posted By: BrendaF
Date Posted: May 28 2008 at 4:24am
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CalGal, when I switched oncs in january, after starting treatment, I asked the new onc what she would have prescribed for first line therapy in mets. She said A & A, but qualified that by saying that since I had significant leg bone pain with taxol in '05, that might have changed her thinking. She says bone pain tends to be more severe with Abraxane. Oddly, I have just finished taxotere (with carboplatin) and leg pain hasn't been an issue at all.
As for nosebleeds, I was still getting spontaneous bleeds two years out from original taxol until I started regular nasal irrigation last summer. I had them some with this recent regimen of carbo/taxotere, but the neti pot helped to keep them mostly under control. It's really an annoyance to have your nose start dripping blood onto a clean shirt....
I am really sorry that your recent treatment failed you. I've followed your progress since I was first dx on both boards and I'm really cheering for you.
Brenda
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Posted By: aaklwalker
Date Posted: Jun 19 2008 at 4:12pm
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CalGal - I hope all is going well with your treatment, I have been on A&A for 12 weeks. First scans were great - one tumor has been reduced from 10cm to 8cm. Side effects are not too bad - nosebleeds, hairloss and fatique are pretty much it. Next scan in 3-4 weeks. Let me know how you're doing on it. ------------- Dx 1/06; Lt Rad mast 3/06; Reoccurrence rt lung; stage IV 1/07 |
Posted By: CalGal
Date Posted: Jun 20 2008 at 2:50pm
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Hello Everyone - I've had 4 treatments so far .... I'm kinda wondering when the various SE's kicked-in for people. 5/20 A + A 5/27 Abraxane only 6/3 Avastin only (wbc too low for Abraxane) 6/17 A + A 6/24 (Abraxane only) & 7/1 (A + A) pending. Got Neupogen so I won't have the low wbc 7/7 or 7/8 - PET/CT scan. Walker - I hope I have scan results like yours! Congratulations on your 20% tumor reduction! I really hope and pray that I too will have reduction ... I'd really like to get back on the right direction and stay on this treatment. My SE's are fatgiue (harder to get to the gym than on other treatments!); vision changes in terms of close-up - guess I need some reading glasses; hair thinning (I've been using the hypothermia caps, gloves and booties). I really hope that I can keep my hair ... It's okay so far, but I'm considering a shorter cut. I sure hope I don't have to bring those wigs out from the back of the closet! No nosebleeds ... (yet?) Think - I also recently had a tickle in my throat and my throat was almost sore (which is usually my first indication of getting sick) and my right nostril was running, later both, and I've had both a dry cough and well as deep and powerfl sneezes. I too have a lung met. Pam, Nancy, Brenda & Caryn - Thanks for your concern and support! 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 |
Posted By: Nancy
Date Posted: Jun 20 2008 at 3:14pm
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Hi there Sweetheart,
You are a "Warrior Goddess".
 "Our Warrior Goddess" You should have your picture on the front of Time magazine. On the front of every magazine. You and CarynRose and many, many of the other gals on this site are a blessed inspiration to everyone elseSo glad you posted to let us know how you are doing. You are a fighter. Harder to get to the gym???? Gads woman, that's tenacity!! I look all the time for your posts. Keep us informed CalGal. Love you, as I do all of the ladies here.
Hugs,
Nancy
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Posted By: CarynRose
Date Posted: Jun 21 2008 at 7:07pm
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CalGal,
Did you try to get into CTCA after you finished with the PARP inhibitors? (Pardon my chemobrain)
If the issue was insurance, please PM me. I found out from the Controller that they will work with insurance companies on a case by case basis. I can get you set up with them if you want it.
Hugs,
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 |
Posted By: CalGal
Date Posted: Jun 21 2008 at 8:31pm
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Nancy - Wow! Thanks for the kudos! I really appreciate your support. I've worked out my entire adult life and always feel better when I do. With a weekly treatment schedule and more fatigue, it's more difficult ... CarynRose - I appreciate your offer. But right now, I'm just past the halfway makr on my A + A treatment. Hopefully, my scan will be good and I'll keep on it. If not, then it's back to trying to figure out the next best option. Does CTCA do 2nd opinions - and those can turn into primary care ... I think the nearest CTCA is in Washington and I'm in CA ... when you first starting posting about CTCA, I checked their locations. Actually, I'm interested in your description of how things go with the onc's there and treatment options, and the rest of it ... When you first got on your "quad treatment" I was really surprised ... and concerned about toxicity as well as using up too many treatments (don't want to run out). But the 4-combo got you to NED! That's what we all want. I'd be interested to chat with you - online or over the phone about CTCA. I still have your e-mail address ... I'm not just in CA, but I'm in Los Angeles ... and believe that I have extensive medical center options for treatment here ... than pretty much anywhere else ... Between treatment and 2nd opinions, I've been to UCLA, USC, City of Hope, BreastLink ... and escaped from my former HMO ... and there's still some cancer centers within an hour that I have not checked out ... Thanks for looking out for me! Congratulations on making such a difference at CTCA (per your FORCE post I think) and at the FORCE conference! 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 |
Posted By: Wendy2
Date Posted: Jun 26 2008 at 9:22am
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I've had 7 A & A treatments since April 29. Three weeks on, one off. So far my biggest side effect is the baldness - AGAIN. I have a bit of reflux and leg aches day 2 & 3, but pretty much going as usual. I was wondering what other SE were after longer treatment. I've heard of neuropathy and nail darkening - have a wee bit of nerve pain in one finger. It's great to be on here and get all this info. The support is fabulous and we can check with each other for those of us whoare behind or ahead of others to pass on the info. God Bless you all. I'm thankful for this site.
Wendy2
P.S.
May cancer markers started at 125, then 66 to 48 this week. Had cough that subsided after three treatments. Hopefully this means it's working. CT at end of July. ------------- dx 3/06 TN, taxotere/cytoxin x4; radiation x 40; mets. to lungs, lymph nodes 3/08 - to begin chemo 4/29/08 Abx/Avas., 9/08 Avastin maintenance, 1/09 - off meds to see if Avastin causing headaches |
Posted By: JulieG
Date Posted: Jul 10 2008 at 9:48am
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CalGal-
Have you developed any more SEs from the A&A? I start monday with A&A and will have it every 21 days. I've been on Avastin since 2/08 so I am very familiar with the nosebleeds and sorethroat. I am already bald from Ixempra and Xeloda (since 12/07) so that doesn't concern me. I also have some moderate neuropathy. I am wondering how bad the neuropathy gets. I am also on radiation and very fatiqued so I wonder if it will get worse.
Thanks for any info you can give me,
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 |
Posted By: CalGal
Date Posted: Jul 10 2008 at 3:22pm
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Hi JulieG - I'm fortunate in that I'm tolerating the A & A (plus Zometa) very well. I'm waiting for PET/CT results now - will get them tomorrow - and I'd love to be on this treatment combo for a very long time. I'm really hoping that it's working. Initially, my onc was going to give me Avastin every two weeks and Abraxance every three weeks. I asked my onc to change the Abraxane to weekly (for 3 wks, 4th week off) as I've read that is more effective and an outside onc I had a consultation with said the same thing. I'm a real believer in the hypothermia (cold) products. I'm using the caps, gloves and booties! I still have my hair! However, the caps come in one size - and I could use a large if they had it. My hair has thinned on the sides between my ears and temples - about 1.5 inches - where the gel portion of the cap does not cover! But it would only show if I wore a pony-tail. For me, that is proof that the caps are working. The same thing happened when I used them back in 2006 with Taxotere & Carboplatin. (Back when I started chemo with AC, I lost my hair - and despite trying to prepare, it was extremely traumatic for me). My mom had a 13 yr battle with bc, until it got her. Besides other things, she suffered with neuropothy and nail-lifting on varioius chemos. While not all get either symptom, I've used the gloves and booties and have NOT had either one! (As I recall some people have suggested B-6 to prevent neuropothy, but I haven't tried it). I do have fatigue, but I usually start out strong and then fade. Naps help. Not to be negative, but to be realistic, I bet your fatigue will increase. When I did rad'tn (38x total) back on my initial dx, the fatigue was cumulative. I worked p/t at my f/t job. I had to get up early for work, but I kept going to bed earlier and earlier, finally at 8:00 pm! So, if you're on rad'tn - there's cumulative fatigue from that ... Plus, fatigue from the A & A combo ... I had that almost sore throat shortly after I started this combo, but it never got bad. I also tend to blow my nose a lot first thing and then at night. A couple times per day I get that "drippy" nose (where it suddenly comes on and drips to my upper lip - so I now carry those mini-tissues in my purse), but so far, no nosebleeds! I hope you're able to tolerate the A & A really well! If you want more info on the hypothermia products, let me know. 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 |
Posted By: thinkpositive
Date Posted: Jul 10 2008 at 4:01pm
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I am hoping for a much lighter schedule - anyone else experienced past treatment 18?
------------- 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 |
Posted By: JulieG
Date Posted: Jul 10 2008 at 4:41pm
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Thanks so much for the info CalGal. I am definitely not looking forward to the fatique issue with rad but I only have 8 more to go (14 in all) so I'm hoping it won't get too bad. I am also planning on taking next weeek off because I will be doing chemo Monday this week, I usually do it on Thursdays and recoup over the weekend.
My hair is already gone (I don't even remember what I look like with hair any longer) but I may be interested in the booties and gloves if they help. Does it keep you cool? My family would probably love it as I keep the thermostat set really low because I am always hot. It doesn't help that we live in South Louisiana, it is like a steam bath outdoors down here.
I am excited that you did not mention extreme nausea. With the Ixempra I had been on nausea was getting to be a real problem. Even with Emend I was very nauseated and had esophigal spasms. So it will be nice if I don't have to deal with that. I have not had the nails seperating from the nail beds yet. My nails are extremely sensitive but I keep them very short and that seems to help.
I am anxious to start these new treatments so the drugs can start killing that nasty beast inside of me.
Thanks again for the info,
JulieG
Thanks again for the info,
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 |
Posted By: CalGal
Date Posted: Jul 10 2008 at 4:54pm
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Julie - Glad to help. I haven't had any bad nausea ... so little, that I forgot to mention it!  When I do, it usually means I need to eat and then I feel better. I still eat everything that I ate before ... although I can't go as spicy!The hypothermia products are by www.elastogel.com The website is supposed to be improved, but the last time I checked, it was pretty lame. The products go in the freezer and then are transported in a cooler filled with dry-ice (although the night before, DH and I pack them in the cooler. They're much colder (effective?) this way. Caps are good 20-30 min, gloves & booties 45. So, I have 3 caps and 2 prs of gloves & booties. You definitely need someone to help you with them. The products can be painfully cold! The caps lose their extreme cold pretty quick. But the gloves and booties, esp the gloves, I tend to keep on for a couple minutes, then take them off a minute or so ... particularly right after they've been put on. CalGal As for the fatigue, maybe it won't be so bad since you're doing 14 of them! ------------- 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 |
Posted By: Wendy2
Date Posted: Jul 12 2008 at 2:15am
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I have my first scan on the 22nd, hopefully mine will be as positive as yours. I've just finished 9 treatments and have a week off - YEA - WBC is a bit low but all in all, not bad. Good luck to you on your second scans - my onc. too said Avastin to continue after chemo.
Wendy2 ------------- dx 3/06 TN, taxotere/cytoxin x4; radiation x 40; mets. to lungs, lymph nodes 3/08 - to begin chemo 4/29/08 Abx/Avas., 9/08 Avastin maintenance, 1/09 - off meds to see if Avastin causing headaches |
Posted By: Barb T.
Date Posted: Jul 15 2008 at 2:48pm
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This has been a very exciting post for me. I'm going to begin A&A
in 2 wks. Have been on Avastin/Taxol for a year but now having bad
allergic reaction. I will be receiving A&A every other week. Has
anyone done that? Started doing A&T that way because of the side
effects of Taxol. I also experienced hoarseness, runny nose w/Taxol.
Sounds like Abx will be about the same. However, the good part is that
there will be no more steroids! I have some hair, not a lot, but
comfortable enough not to wear a wig. Wonder if I'll lose it all with
Abx. Have any of you been on A&T and then switched to A&A? If
so, what do you think? What have been the results of your scans? Also,
I never did the cold paks w/Taxol. Should I consider it with Abx? Thanks! You are all such warriors! I have learned so much from all of you. ------------- Barb T. 1st bc 3/03 New bc 2/06 with Mets to liver/chest/lymph nodes Avastin/Taxol Avastin/Abraxane - 7/08 |
Posted By: Leo the Lion
Date Posted: Jul 16 2008 at 1:53am
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Cal Gal,
It sounds like you & I are in similar situations. I just started taxatere. I can't do Avastin as in March I had 3 brain mets, which were Gamma Knifed, very successfully. Then my onc tried Xeloda which did not work. I realised that when I started having severe pain on my side. Which frightened me. That was the 1st time I had pain from the cancer. I am fortunate to still only have the cancer in soft tissue.
So this taxatere is my 4th type of chemo & I would like more info on the hypothermia products. I always say the better you look, the better you feel. The hair thing has always been my bain.
Love to hear from you! ------------- May 2005 Stage 3 Triple Neg Chemo 6/05- 9/05 Mastectomy ,lymph nodes 10/05 Radiation 1/07 soft tissue recurrence 10 rounds Doxcil 1/08 left lymph node recurrence 3/08 brain mats |
Posted By: CalGal
Date Posted: Jul 16 2008 at 12:33pm
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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!" 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!  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 |
Posted By: Nancy
Date Posted: Jul 16 2008 at 1:04pm
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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.
tell him for me that I applaud him.hugs,
Nancy
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Posted By: BrendaF
Date 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? |
Posted By: aaklwalker
Date Posted: Jul 19 2008 at 9:53am
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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 |
Posted By: CalGal
Date Posted: Jul 20 2008 at 7:26am
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Thanks Nancy & Brenda! 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)! 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 |
Posted By: LTrev
Date Posted: Jul 25 2008 at 8:30am
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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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Posted By: aaklwalker
Date Posted: Jul 25 2008 at 10:18am
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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 |
Posted By: Barb T.
Date Posted: Jul 30 2008 at 5:46am
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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 |
Posted By: thinkpositive
Date Posted: Jul 30 2008 at 6:46am
 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 |
Posted By: Barb T.
Date Posted: Jul 30 2008 at 9:33am
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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 |
Posted By: CalGal
Date Posted: Jul 30 2008 at 11:13am
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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 |
Posted By: Nancy
Date Posted: Jul 30 2008 at 11:46am
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CalGal,
Avastin at $10,000 per dose??????????????? OMG!!!!Are the pharmaceuticals getting fat on this or what???????????
 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.
Hugs,
Nancy
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Posted By: JulieG
Date Posted: Jul 30 2008 at 1:18pm
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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 |
Posted By: CalGal
Date Posted: Jul 30 2008 at 2:46pm
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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 |
Posted By: Barb T.
Date Posted: Jul 30 2008 at 5:43pm
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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 |
Posted By: JulieG
Date Posted: Jul 31 2008 at 1:37pm
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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 |
Posted By: another nancy
Date Posted: Jul 31 2008 at 3:35pm
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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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Posted By: thinkpositive
Date Posted: Jul 31 2008 at 3:48pm
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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 |
Posted By: aaklwalker
Date Posted: Aug 03 2008 at 3:40pm
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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 |
Posted By: CarynRose
Date Posted: Aug 06 2008 at 4:38am
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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 |
Posted By: trip2
Date Posted: Aug 06 2008 at 5:25am
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Oh CarynRose were they able to get the gastric bleeding stopped or did it stop on it's own because you halted your Avastin?
Bless your heart, I so hate that women are having to go thru all of this but that is good news that the Avastin is being helpful indeed.
Big hug, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: another nancy
Date Posted: Aug 06 2008 at 6:02pm
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It is good to hear that others are doing some type of maintainence avastin and it is working for them. My onc is talking about doing the same thing with me. I wonder if it is the avastin giving you the painful poops....is one of my side effects also...This week they gave my a different type of anti-nausea medication and not having as many issues. I got some good news today. Again, I have just completed by third cycle of Abraxine and Avastin. I had a PET/CT on Monday and my results came back as no evidence of disease....I just love NED....he is my pal now. I will be doing 3 more months of the A/A. I am so happy.....
Another Nancy
1/08 DX
Neoadjuvent A/C 2/08
Mastectomy 4/08 Stage Stage 3B 4/7 nodes
PET 5/08 revealed subclavicular, mediastinum mets
5/08 Abraxine/Avastin
8/08 NED
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Posted By: cg---
Date Posted: Aug 06 2008 at 9:57pm
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Dear Another Nancy,
How wonderful you have had such amazing results. I hope that you will be dating NED for a very long time!
Cyber Hugs,
Connie
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Posted By: CarynRose
Date Posted: Aug 07 2008 at 2:14am
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Another Nancy --
CONGRATULATIONS on dancing with NED. He's a wonderful partner.
Pam, yes, after 3 weeks off of Avastin, my bleeding subsided and all seems to be well. They added Pepcid to my premeds yesterday so that my tummy would be more protected and I'm happy to report (get ready for TMI) that this morning's poop was perfectly normal and not painful.
I'm very happy to be back on the Avastin. I feel like it's my safety net.
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 |
Posted By: trip2
Date Posted: Aug 07 2008 at 8:34am
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CarynRose I am happy to hear things are back to "normal". lol
Another Nancy, my congratulations for your meeting NED! ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: JulieG
Date Posted: Aug 07 2008 at 1:18pm
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My congrats also Another Nancy on meeting NED. I have a question though, what is NED? I know it's something good but that is one acronym that I am unfamiliar with. CarynRose, I am glad you brought up the issue of painful poops. I also have the same side side effect. I am going to ask for pepcid to counteract it. I hate the painful poops, it's almost like having a baby everytime I go to the bathroom. I just got out of the hospital today. I had fiducials implanted (little pellets) for the Cyberknife procedure I am about to go thru. They told me it would be painless because you don't really feel pain in your liver. THEY LIED!!!! I felt everything. (They didn't really lie, I am just wierd and feel everything in my liver.) They ended up having to give me tons of morphine and kept me in the hospital overnight so I could stay medicated. But as you know every cloud has a silver lining. Because I am back on morphine I was able to eat a hamburger! My first solid food in FOUR weeks. I have esophagitis from radiation. It was the most wonderful hamburger I ever ate. I promised my Onc Nurse Practitioner that I would stay on morphine for a while to be able to heal. So I am going to have fun eating too! 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 |
Posted By: Nancy
Date Posted: Aug 07 2008 at 1:25pm
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JulieG,
NED is "No Evidence of Disease"! By the way.....Congratulations Another Nancy!! Words every gal here and any one else dx with cancer wants to hear
Hugs,
Nancy
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Posted By: thinkpositive
Date Posted: Sep 03 2008 at 4:25pm
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Julie G - I also have lung mets and am on Avastin and Abraxene. I was curious as to whether it was working for you. Also, saw that you were going through a cyberknife procedure, was that for your lung mets?
Hope you are doing well. Sorry you had to do the hospital thing.
------------- 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 |
Posted By: Madison
Date Posted: Sep 03 2008 at 6:05pm
| Hi everyone, I haven't posted for awhile. I was on the Ixempra thread but it didn't work for me so now I'm on Abraxane/Avastin/Zometa. I have bone, liver, and lung mets. I've been on this combo for three months and just recently had a scan. Everything is stable with mild improvement! So I can say this has worked so far for me. Good Luck everyone. Maddie |
Posted By: trip2
Date Posted: Sep 04 2008 at 5:45am
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Maddie,
I am so glad that the new meds have worked for you! That is fabulous, congratulations!! ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Wendy2
Date Posted: Sep 04 2008 at 9:13am
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Great News Maddie! YEA.
I also have been on Abrx/Avstn. Sept. 2 was my LAST treatment. I stopped 4 treatments earlier than prescribed - becaused I ASKED! I find it incredible how much you have to manage your own health - especially in this situation and with a great doctor/onc.  The hope when treating mets. is to shrink, destroy, the tumors and to have NO side effects of cancer; so when my lung mets symptoms were gone after three treatments and my July PET and CT were extremely well and my cancer tumor numbers were NORMAL, AND when I started feeling a bit crappy, I asked WHY DO I HAVE TO CONTINUE ON THIS only to have the chemo side effects make me feel bad? Onc. said "Well every chemo protocol is made up of even number of treatments and that's just the prescription", so I said well with markers normal, I mean really normal, CEA .7 that's point 7, 5 being normal and CA127-129 being 31, do I really want to continue this med. and feel worse and worse. He said, "reasonable question and No you don't." So I'm on Avastin for maintenance and my crappy feelings are going away and my MENTAL health has improved SO much. Just another reason for all of us to be here and learn from each other so we can be advocates of our own health! Cheers to you Maddie and all of you who are positively making progress!  ------------- dx 3/06 TN, taxotere/cytoxin x4; radiation x 40; mets. to lungs, lymph nodes 3/08 - to begin chemo 4/29/08 Abx/Avas., 9/08 Avastin maintenance, 1/09 - off meds to see if Avastin causing headaches |
Posted By: cmtrots
Date Posted: Sep 04 2008 at 12:18pm
| Happy for you:) I'm also on abrx/avstn. and would like to know if it gave you headaches? |
Posted By: thinkpositive
Date Posted: Sep 04 2008 at 1:52pm
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Wendy 2 - great news. I hope my last combo treatment was today. I am having another scan and MRI in 2 weeks and my next Avastin in 3 weeks. The last scan showed all but one small spot on the lung so keep your fingers crossed. Your results give me a lot of positive vibes.
Stay well. ------------- 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 |
Posted By: another nancy
Date Posted: Sep 04 2008 at 3:20pm
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cmtrots, I have been on abraxine/avastin for 4 months. I get terrible headaches about 2 days after chemo. The headaches after each treatment has gotten progressively worse. The good thing is that the next day I am fine. I normally have terrible sinus infections this time of year so and it has been so hot /high pollen count, I am sure this was a contributing factor. I was also cleaning out closets and got a nose full of dust..... Beside nose bleeds, these are the only side effects I have. I will tolerate that since this chemo regime has worked great for me.  ------------- Original DX 1/31/08 Port - Neoadj Chemo 2/07 A/C Rt Mast 4/08 Stage 3B 4/7+ nodes 5/08 PET - subclavicular /mediastinum node+ 5/08 Chemo Abraxine/Avastin 8/08 NED More chemo and rad to follow |
Posted By: Wendy2
Date Posted: Sep 04 2008 at 3:25pm
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I didn't get headaches with Abrx/Avstn.
I still have lung nodules but they are smaller.
Good luck.
------------- dx 3/06 TN, taxotere/cytoxin x4; radiation x 40; mets. to lungs, lymph nodes 3/08 - to begin chemo 4/29/08 Abx/Avas., 9/08 Avastin maintenance, 1/09 - off meds to see if Avastin causing headaches |
Posted By: CarynRose
Date Posted: Sep 04 2008 at 3:32pm
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another nancy,
I got TERRIBLE headaches after Avastin and figured out that it was a high blood pressure headache. It would last a day or so after treatment. I was VERY worried about it and they reinstated giving me steroids before my infusion. Sure enough, I don't get the headaches anymore and my blood pressure remains normal.
You might want to bring this up to your docs.
All the best,
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 |
Posted By: another nancy
Date Posted: Sep 04 2008 at 3:42pm
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Caryn Thanks for the insight. My BP is normally very low so this is a possibility and one of the listed side effects. I will discuss with my doc this week. N ------------- Original DX 1/31/08 Port - Neoadj Chemo 2/07 A/C Rt Mast 4/08 Stage 3B 4/7+ nodes 5/08 PET - subclavicular /mediastinum node+ 5/08 Chemo Abraxine/Avastin 8/08 NED More chemo and rad to follow |
Posted By: CarynRose
Date Posted: Sep 04 2008 at 4:21pm
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My BP tends to the low end too. Probably why the change caused the headaches.
Good luck,
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 |
Posted By: lilysmomac
Date Posted: Sep 04 2008 at 6:25pm
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Hi. I am new on these posts, but have been so inspired by all of your amazing spirits and stories! My sister has Stage 4BC with mets to pretty much all of her bones and to her liver. She has most recently been on Avastin and Abraxane, and it was discontinued because of progression. From the time of about the last 4 treatments on she has had really severe leg/ knee/ hip pain. She is SUPER tough, but has been in terrible pain lately that has caused her to be on around the clock narcotics. She had been on Vicodin, but over the past few days her onc has been trying her on Oxycontin. THe Oxycontin dies pretty much nothing to the pain. Is this pretty unusual for such a srong med? Has anyone out there experienced this severe leg pain with the Avastin/ Abraxane combo, and has anyone found some good treatment to minimize the pain? Thanks so much! Ang's Sister... Angela's Stats... 01/07 St IV mets to bones, liver, and blood 03/07 Clinical Trial using HDAC inhibitor & Fec100 shrunk primary tumor from 5X4cm to immeasurable 06/07-07/07 Tamoxifen trial- unsuccessful 07/07-12/07 Arimidex- stable disease 12/24/07- rapidly growing tumor in opposite breast as primary 01/08- Bilat mast 02/08- growth of disease to outer chest wall 02/08-06/08- Carboplatin & Taxotere... stable bones and liver, mild progression to chest wall 06/08-08/08- Avastin & Abraxane... progression of liver 09/04/08- awaiting approval for new clinical trial! |
Posted By: cg---
Date Posted: Sep 04 2008 at 6:38pm
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Dear Ang's Sister, A bisphosphonate will help so much with her pain....see if the doctor will put her on Zometa. Women with bone metastases get such good relief of the pain when they use a bisphosphonate and their regular pain medication. Maybe she could use a fentanyl patch....this is a patch that is put on once every 72 hours and gives good pain relief for chronic severe pain. I hope she gets relief soon. I do not know where she is being treated but have they tried Xeloda? You are very kind helping your sister. Connie
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Posted By: Wendy2
Date Posted: Sep 05 2008 at 2:00am
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An's sister
I have terrible hip pain and am having an MRI on Monday. I just thought it was some aches from the chemo. Keep ya posted.
Wendy ------------- dx 3/06 TN, taxotere/cytoxin x4; radiation x 40; mets. to lungs, lymph nodes 3/08 - to begin chemo 4/29/08 Abx/Avas., 9/08 Avastin maintenance, 1/09 - off meds to see if Avastin causing headaches |
Posted By: cmtrots
Date Posted: Sep 05 2008 at 7:08am
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another nancy,
Good to hear this regimen is working for you. Gives me hope. I feel a little better to hear that you and others experienced headaches too. Thanks |
Posted By: another nancy
Date Posted: Sep 06 2008 at 2:37am
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Spoke to my doc about the headaches...she is planning to switch the premedicine before chemo to see if that helps. She thought the Decadron they give me before chemo may be the cause. She said if the headaches were constant, she would do an MRI to see if there is any swelling of the brain due to the avastin use. ------------- Original DX 1/31/08 Port - Neoadj Chemo 2/07 A/C Rt Mast 4/08 Stage 3B 4/7+ nodes 5/08 PET - subclavicular /mediastinum node+ 5/08 Chemo Abraxine/Avastin 8/08 NED More chemo and rad to follow |
Posted By: CarynRose
Date Posted: Sep 06 2008 at 3:21am
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Glad you and your doc are on top of it nancy.
Hugs,
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 |
Posted By: lilysmomac
Date Posted: Sep 06 2008 at 6:55pm
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Dear Connie, Thanks so much for the info. Angela has been on Zometa for about a year and a half now. Do you think that she could have her dose increased? Is this a drug that her body could become tolerant to, and perhaps isn't working for her any more? Does the intensity of her pain sound like the effects of the chemo or more like the cancer? Her oncologist said that she seems very confident that it is probably just the chemo effects because she just had a clean bone scan. I fear that it could be the cancer, because the pain is just so darn bad and constant for her and nothing is seeming to ease it. We will ask both about a Fentanyl patch as well as Zeloda on Monday. Thank you so much. Ang's sis |
Posted By: CalGal
Date Posted: Sep 15 2008 at 2:22pm
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Hello All - It's been awhile, so here's an update. The weekly (3 on, 4th off) really keep one busy. At the last minute - DH and I decided to go to Ireland - buying our tix just 2 wks prior. I took advantage of off wk #4 and delayed starting the next round by one week. It was a wonderful trip and so great to get-away from cancer-world! The day we left, I had my PET/CT scan that morning, the first scan since adding Gemzar to the mix. After we returned, I got the results on Friday. Day 1 - Avastin, Abraxane, Gemzar Day 8 - Abraxane, Gemzar, Zometa Day 15 - Avastin, Abraxane, Gemzar Day 22 - Off! For me, adding the Gemzar really helped! All of my mets shrunk or were stable!! That's quite a few mets: lung, mutliples in the liver, abdominal node and T-7. Only the latter one stayed the same, the others shrunk! However, there is one new one in my liver, but I can't help but to wonder if it was missed due to the way the "slices" went. On the down side, the "uptake" was increased on most lesions ... Onc & I decided we'd stay on this treatment. So, back to Avastin & chemo tomorrow ... It's been so great to have a 3 wk break! 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 |
Posted By: Nancy
Date Posted: Sep 15 2008 at 2:55pm
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Hi there CalGal,
About time you checked in
So glad that you got away. I know a few people who have been to Ireland, and they say it is beautiful. So, you got rejeuvenated!! That is wonderful news as to the scan
The mix must be working! You will have to explain to me what you mean by the "uptake" was increased on most lesions. I know that I ask many questiona of all of you gals, but I really want to know, and who better to ask...than all of you. Thank you for being patient with me when I do ask. Now if I can just retain all this information Just keep the visual imaging of Ireland when going for treatment tomorrow!
Hugs,
Nancy
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Posted By: CalGal
Date Posted: Sep 15 2008 at 3:16pm
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Hi Nancy - Thanks ... The trip was just great, we rented a car and DH did a very nice job driving (on the opposite side) all over the country! I was the navigator. On a PET scan they inject a radioactive glucose type of substance that "picks-up, lights-up or uptakes" on "active areas" which are primarily growing cancer cells. So, while it was great that almost all of my lesions are shrinking, there is "increased activity" ... So I take it as the cancer cells are getting more active. Low uptake or no uptake (dead cancer cells sometimes) is much preferred! I'm relieved to be staying on the same treatment. I read thru the entire Ixempra thread here, figuring that is my likely next option ... but hopefully, I won't need it for a long time! 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 |
Posted By: trip2
Date Posted: Sep 15 2008 at 3:24pm
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Hi Calgal,
I am so happy for you that the Gemzar worked.
You sound like the trip did alot for you and I'm happy to see you had the opportunity. Sometimes we have to just grab onto what sounds like a fun idea, the break is needed to go for it!
Hugs, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: thinkpositive
Date Posted: Sep 25 2008 at 12:56pm
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I have been on Avastin and Abraxene since Feb for lung mets. Previous scans showed real improvement but Monday's scan shows progression of the mets - some spots that had shrunk are growing again. Onc. is proposing Avastin and Xeloda as next regimen.
Has anyone experienced similar recurrence ? Would also like to know what to expect with Xeloda - how often and what dosage ? Side effects?
Needless to say I am concerned that I am starting over - any suggestions about alternative treatments that I should pursue would be welcome. ------------- 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 |
Posted By: vickyann
Date Posted: Sep 25 2008 at 1:11pm
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Positive thinking and keeping yourself in the best shape ,mind and body is the key to everything. Miracles happen eveyday. How did they fiind the lung mets? vickyann
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Posted By: thinkpositive
Date Posted: Sep 25 2008 at 1:28pm
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Hi - yes trying to stay positive. They found the mets when I did my routine follow up xray. Funny thing was that I had some pain in my arm and thought I might have bone mets - I was surprised when the lung mets showed up. I had 4 spots, 3 were not visible after treatment and the 4th was smaller but the latest scan shows progession. I see the doctor on Tuesday. ------------- 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 |
Posted By: cmtrots
Date Posted: Sep 25 2008 at 1:45pm
| I went to one of the top research hospitals ( IU Medical, where Lance Armstrog went)and saw a Breast Cancer Onc. to get a second opinion for my lung mets. He suggested 1.Avastin and Abraxene 2. Avastin and Nalvadene 3. Avastin and Taxol. He said if no luck with those he suggested a clinic trial in Inianapolis called MPA. Never mentioned Xeloda. A couple years ago, before lung mets, just lymph node involvement I was on Xeloda. My cancer came back in a month and it really took a toll on my feet and hands. Plus bad diharrea. I don't remember the dosage or regimen, sorry. Plus eveyone tolorates these chemos differently. Don't want to scare you about Xeloda, cause people react differently to treatments too. I think I've heard on this post some successes with Xeloda. I'm on Avastin and Abraxene right now, due for my first scan in a couple of weeks. Maybe ask your doc about Avastin and Nalvadene, guess it wouldn't hurt. How many lung mets did you have? How many do you have now? |