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Old 02-25-2009, 08:40 AM   #1
Believe51
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~Opinions On 'Ixempra' For Mighty Oak~

Welcoming all opinions on this drug for the next search for a 'magic potion'. We have several choices for treatment options but want to explore this too.

I know that there are still alot of hope with these choices and we are no where near the end of the line. I am still concerned with brain protection and we are still pondering Tykerb/Herceptin/& another agent or another combo.

He needs to completely heal his throat and gain some weight before the next chemo. We have time to explore before making a choice. I know we are "pee-ing" off this cancer now and it is fighting to survive more than ever. It just does not get it. Well, Mighty Oak is still here to send cancer that message. Cancer, if you are hearing us, we are telling you that you are going to be in for one more big surprise!! If I was you I would just die off on your own so we do not have to shame you once more!

Looking anxiously forward to all your opinions and feelings.>>Believe51
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 02-25-2009, 10:22 AM   #2
vickie h
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Hi Marie,
I'm currently on Ixempra and Xeloda. 3 weeks between Ixempra infusions and every other week for Xeloda (pills). I have had 2 treatments and they are not seeing the results they were hoping for. My next visit with my main Onc is next week and they will decide then whether to continue or to look for something else. I have been on the phone with MD Anderson all morning and they want me to fly out there next week to begin a battery of tests. I will be staying there for 11 to 14 days.
I wish I had better news on the Ixempra for you, and hopefully it will work for Ed much better than it has for me. My Onc said there was a 10% chance of effectiveness when I started. My problem is so many skin mets at this point.
The side effects have been quite a bit of nausea, hair loss (my 4th time), AND fatigue (low red and white counts, also).
I will be praying that Ed has a better time with the Ixempra if he goes on it. There are several other people here that were on Ixempra but i can't seem to remember their names at this point. I will know a lot more about it after my trip to MD Anderson. I will be seeing a IBC specialist there, The top specialist for our kind of cancer in the world.
Good luck to you, sweet sister. Let me know if I can answer any more questions for you, or if there is anything I CAN DO for you or Ed.
Much love, Vickie
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Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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Old 02-25-2009, 10:49 AM   #3
Believe51
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Vickie, thanks for the honesty. For us we are concerned with the fact that he was already on Xeloda with Tykerb and he failed. Even with Tykerb in another combo I find a tad scary. Of course we want to make the right decision because the cancer is getting more aggressive. Funny how that sounds, 'more aggressive', uggh!

I want to have that brain protected since I am afraid of the chance of more brain issues. I mean, how many times can one undergo the Gamma? Those salted areas of the brain (mets) was a miracle in itself to see flee. Just do not want to press our luck. I also want to keep this away from the organs.

We are comfortable waiting for some added weight and a healed throat before starting chemo. There is no right answer but by researching and customizing treatment we are confident we can buy some more time. I feel it is too early for clinical trials but never dispatch that from our options. Open to everything at this point.

We are not giving up, we are gearing up. We are ready for war once again! In the mean time, a clean brain with no new mets means we are granted more time. Time that allows us to live and fight another day. Thanks for the reply, your friendship is one of my greatest gifts!>>Believe51
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 02-25-2009, 12:47 PM   #4
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Good morning (my time) Marie!

I want to address your comment about not yet "ready for clinical trials."

A good oncologist will always be on top of what is available and how he thinks a particular patient might fit in one of those. With hard to treat mets, the clinical trials have often shown great benefit.

Take the Trastuzumab - DM1 for instance. I understand a reluctance for Ed to enter that as you fear his brain may be "unprotected." However, if his brain mets are proving to have been successfully treated (and I know this is hard to prove!), I would consider that trial.

There are other drugs and targeted combos that might prove more effective than Ixempra. Look at treatments that will go after the HER and VGRF (?) pathways. Box in the cancer and also maybe look at killing it in the division stages.

Since they are "not sure" (from your other post) where the cancer is - maybe Epirubicin in the dose dense version could be effective.

Just a few thoughts in response to your query. Ed needs to feel some confidence in whatever the new treatment is, so keep up the good work on the weight/strength issue so he can also think about these considerations.

Lots of Love to you both.
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MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.

Last edited by StephN; 02-27-2009 at 06:11 PM..
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Old 02-25-2009, 05:20 PM   #5
chrisy
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Marie,
"For us we are concerned with the fact that he was already on Xeloda with Tykerb and he failed."

Ummm...I need to remind you, Ed didn't fail, the Tykerb/Xeloda failed.

I agree with Steph's comments on the clinical trials. You don't necessarily want to rule those out as an option, but you do have to balance that with wanting to be in a relatively controlled condition going in. And of course you have to thread the needle on qualifying - have just the right amount/type (but not too much) of prior treatment and be healthy enough otherwise...

The disadvantage of the unproven therapies is that they are, well, unproven. But then again, the "proven" ones don't work for everyone either. The advantage of the new/trial therapies are that they are more and more the new science - more targeted and more easily tolerated than the traditional chemos. This is so important as you know - the patient has to have the resources to fight the cancer physically, mentally, and spiritually.

There are so many options out there which is a blessing and a curse...is Ed's oncologist on the cutting edge or at least have a connection with the latest research areas?

I know you are not ready to give up - and I'm glad that you are taking some time to plan your next attack while Ed rebuilds his strength.

Hang in there!

Much love
Chris
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June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
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Old 02-27-2009, 11:53 AM   #6
Believe51
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First off this post is just what the doctor ordered, interesting and thought provoking; exactly what I needed. I try to be very careful about what I write and how I write it, especially when replying to others posts. Thank you Chrissy for spotting something I wrote that should have been better thought out and spoken. What I meant to say is the 'he failed' in his quest for this chemo (ChemoFail), not that Ed failed. I am happy that you, rather than Ed noticed that first so I could clarify it.

Another interesting feeling that could hinder us is the underlying fear that was expressed unknowingly about the clinical trials. Although I view those who embark on them (wink) the ultimate, I guess the 'not-knowing, not proven' thing really takes me for a loop. Chrissy, I thank you for enlightening me, for teaching me things and expressing your feelings about them. I feel very different about them now.

Steph, your views also was what I needed. Your points were well taken and most appreciated. When discussing the brain you always have me feeling so strongly afterwards. I feel so much better after reading your feelings and appreciate the provoking thoughts you provide to me. This honesty really helps me to make the best decisions possible with what we have to work with.

Lucky for us our doctor runs the Cancer Clinic we go to. Actually we only go there because he is there. He is on the cutting edge and spends more time learning, advocating and pressuring for clinical trials than he has patients now. There are a few of his patients that are in sticky situations and he has free reign of advocating trials for the clinic. We have witnessed many beautiful trials here. Also, he looks at these patients best bets and works on getting that trial there. When Ed wanted to go on the Tykerb our doctor not only got it to him but started trials too. OncoMan does push for the patients with trying situations and we could not be more blessed. Also, OncoMan has discussed Ed's case with doctors when in conferences all over. We have given him permission to him and others to feel free with his case, for him and the sake of others. Having said that and seen it in writing, after hearing what all you fine ladies have expressed.....well, let us just say that I feel I have grown. I feel more comfortable and confident with what is to come.

So my fine friends I thank you for the discussion and the thoughts. Your feelings are prized and not a gift you can just get anywhere. Even the best doctors cannot supply the feelings and thoughts that the patient has been through. No doctor! We are still exploring our options but I do feel better about it. Since I have loved you all for 2 years I think you know the drill by now.....When a treatment fails and it is time to attack again, Marie plans for that attack. No matter what plan I always get a little insecure about not making the right move. I work best under pressure and when there is less to tend to I start getting antsy. What is the right move? There is none, it is what the heart feels and I should not second guess that all the time.

We are blessed to have this time together since we thought we would not. I want more! This post helped more than you know. Even the fact that I thought I was more open to clinical trials but my words and heart spoke differently. So Vickie, Steph and Chrissy special prayers for you after this reply. Today and always>>Believe51

PS: Ed and I will be free flying in a couple of weeks. I will feel better when he starts treatment as selfish as that sounds.
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 02-27-2009, 12:37 PM   #7
Ceesun
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Marie, Please know my thoughts are with both you and dear Ed. Ceesun
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Old 02-27-2009, 01:39 PM   #8
loveher
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Hi Marie,

My mom just started ixempra today. She actually had one infusion last summer and the side effects were rather harsh. She had a lot of general weakness and naseau. She stayed in bed most of the first week. hopefully we'll see good results, id like to think she's not suffering for nothing. And I hope Ed won't have too many side effects if he does start ixempra.

I hope you guys find an effective drug combo. and btw i really enjoy reading your threads they have so much personality : )
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Old 02-27-2009, 02:06 PM   #9
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Marie,

I am not sure about the best answer. But based on my own experience, chemo assaults the brain much more than Gamma-knife.

I had Gamma-knife in 2001. Two years later (fall, 2003), my IQ was pretty much the same. But after two chemotherapies (6 rounds each in 2003 and 2007 + Herceptin [22 weeks]), my IQ had dropped 21 points when tested in mid 2008.

From the information I gathered about Gamma-knife, the radiation very slowly affects the fast-growing cells and causes the tumor to 'wither'. It is possible that because my brain tumor were located inside of the lateral ventricle, the radiation was focused on the fluid-filled sac and did not affect much of the other normal brain tissue.

Since brain is a living organism and is capable of reconnect (synapse) and regenerate, I really wouldn't worry too much about the side effect when considering life-saving measures. Just be sure to 'exercise, exercise, exercise' and the brain will find its own way to 'rewire' - remember we don't use but 3% of our brain capacity.
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Old 03-09-2009, 08:50 AM   #10
Believe51
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Just a bump for all that may have missed this. Welcome to all opinions, thanks>>Believe51

PS: I do think there are better combos than this but always leave an open mind.
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 04-23-2009, 03:10 PM   #11
Believe51
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Bumping this up if anyone missed this. Although I was unsure if this was the right move in the first place, I am having second thoughts. I think we will be using this alone, like Lopsided did.

Any more thoughts are welcomed.

We have not made a certain regime at the moment but will start chemo this coming Wednesday.>>Believe51
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 04-23-2009, 03:47 PM   #12
StephN
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Dear Marie -
I sure wish you had better news on the weight of Mighty Oak. But, in a way, I was not surprised that he was unable to pack on a few pounds due to all the stress and worry over his Mom. Which is ongoing.

Have you asked your Oncoman about the efficacy of Ixempra in Her2 vs. Her2 negative patients?? I recall that this drug did not work for a few of our members who have used it.

What about Docil? Or a Tykerb combo, which there are a few now.

Hope you will get some more responses.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 04-23-2009, 05:07 PM   #13
WomanofSteel
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Marie I have no opinion to offer, just want to wish you luck in choosing a treatment. Remember there are no right or wrong choices. We try and try again till we find that magic combo. Hopefully whatever you choose will be the one for Ed.
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dx aug 03
invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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Old 04-23-2009, 06:36 PM   #14
Believe51
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Talking

Thanks Pals. Sometimes I have to remind myself that if this does not work, try, try again. I just get a little more fearful with each chemo regime, even though we have gained the time that we are searching for so far. The longer we live with breast cancer and the more time we gather, the more difficult I feel it shall be at 'that time'. Being the positive yet the realist person I am, I know that this will one day steal him from me. I do not want to make anyone sad or less hopeful by saying this.

Steph, I actually went into two sessions with the OncoMan and basically told him my inner voice says to avoid this drug; no particular reason just the feelings I have. OncoMan gave me his reasoning for trying the Ixempra and has sold me more than once. One thing that was pointed out to me a few times was 'uncharted waters' are not always stormy. Herceptin and Tykerb should have proven a much better result for Ed than they did; I could have Herceptin put back into the mix I just have to tell the doctor. This scares me a bit to try the 'supercharged' versions of these drugs, but they are still options also. Again, uncharted and maybe unfairly judged by me. Sometimes we must just jump in the water and hope we can swim. I know there are still other options and this gives us hope.

On a funny note, Ed and I are sitting in the room waiting for OncoMan and I can see him fidgeting in the seat. He always sits in my chair vs. the examining table while waiting. Marie jumps off the exam table and quickly starts to rub his back. I thought I was going to put him to sleep as I massaged his aches. He looks up at me with his eyes closed and tells me this is not right. "Marie, your back is out this week and here you stand rubbing mine." Again he goes into a trance. A few minutes goes by and he is looking down at the floor as he says, "Marie, we have to start doing each other." The doctor walked in but he had no idea that he was talking about the heated stone therapy that I do to myself. Boy were we embarrassed, seems like every time that the doctor comes in we are always misbehaving. I still cannot stop chuckling about this. Boy do I have my hands full.>>Believe51
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 04-23-2009, 06:39 PM   #15
Joe
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Marie,

Christine's radiation oncologist has told us that there is a theory on how many times a patient can receive Gamma Knife, but he has never seen it nor is aware of any case where a patient has ever reached the limit.

Clinical Trials: There are numerous clinical trials for HER2 bc. Fortunately you live near some major cancer centers and may qualify for some. Wyeth is planning to do a phase III trial of Neratinib, which is a small molecule and may go through the blood brain barrier. The phase II trial results were released at last December's San Antonio meeting and may soon be our next weapon.

We have been discussing, with Genentech, the possibility of releasing Herceptin T-DM1 for "compassionate" use and they seemed receptive to the idea. Keep your fingers crossed and your prayers coming that it happens as many lives will be saved. The FDA has already "fast tracked" the drug.

If you did see the movie about Dr. Slamon "Living Proof" the story of Barbara Bradfield is true, although she is nothing like Bernadette Peters. She was enrolled in the Phase I study of Herceptin, had a complete clinical cure, and is still alive and enjoying life - CANCER FREE

Here is a picture of Dr. Slamon, his wife and Barbara..she is in the middle.
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Old 04-23-2009, 07:12 PM   #16
Beckie
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Marie,

Your picture is darling! I am also looking for another drug that I can take with Tykerb. I went off Tykerb for 4 months (went on Herceptin and Navelbine for my lungs) and got 2 small brain mets which I've had stereotactic radiation for. I want back on Tykerb but right now we're researching what can be taken with it. I wonder what are the combinations StephN mentioned? I am still praying for you and your husband. Let me know if you find out anything. Thanks!

God bless!
Beckie
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Diagnosed 4/06, age 55
1.1 cm tumor
Pre-op x-ray caught lung nodules
6/06 - Stage 4, Her2+++, er/pr-
Mets to lungs(largest 3 cm), liver (largest 5.5 cm), and bones
Began taxotere, herceptin, & aredia
7/06 - radiation to lower spine & left shoulder for pain
8/06 - everything smaller
12/06 - stopped taxotere (toe infections)
5/07 - bone mets advancing
6/07 - add navelbine to herceptin & aredia
6/07 - discovered brain mets (3 in cerebellum, largest 2 cm.)
7/07 - WBR, change to Tykerb/Xeloda
9/07 - targeted radiation
10/08 - started navelbine/herceptin
2/09 - brain mets - targeted radiation
5/09 - mets in liver progressing, changed to Ixempra
7/09 - mets in liver still going, to the brain again, on gemzar now
9/09 - gemzar failed, started Doxil today


I know Who holds the future, and I know He holds my hand.
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Old 04-24-2009, 08:41 PM   #17
Joan M
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Marie,

My prayers are with you and Ed that you'll find a workable combination treatment, and as Joe suggested there are also trials to look into. If Ed were to try and trial and not feel well he can always discontinue.

Hugs,

Joan
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 04-24-2009, 09:07 PM   #18
Believe51
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Posts: 2,999
Thanks everyone, the imput helps to get directed to the right road. As mentioned before, Ed has always had a problem with weight and nutrition and right now he is 196lbs (6'2"..uggh). He is really beat up from this fight and the concern to go a bit easy is vital. Double-edged sword....we need to keep the cancer at bay but must go easy enough for him to live through it. Lately he has been lightly talking about 'there will be a day that I may want to stop treatment'. He will fight for every second of every day, but his quality of life stinks right now and I do understand.

For now I am continuing the research I have been doing for the last several months. The OncoMan can get whatever he needs and that gives us peace of mind. I also feel secure living in the epicenter of many remarkable institutions. Kind of a weird blessing (smiling).>>Believe51
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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