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Old 10-05-2012, 06:44 PM   #1
Vicki revised
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Question Start, stop, start, stop

This is my X/T routine since we can't get these side effects manageable. Today is day 5 on nothing and the trots are back in full force and my feet are worse. Anyone else have this much difficulty getting adjusted?
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Vicki
Lord, give me the comfort of Your embrace and acceptance of Your will.

3/11: DX: IDC, HER2++, ER/PR neg, stage 4, mets to liver. Primary tumor: grade 3; 11 cm. 2nd smaller tumor: ~2.5cm. Multiple affected nodes, 1 spot on liver. 6 rounds TCH prior to bmx.
7/11: Nothing left except Primary breast tumor now 1.5cm.
8/11: BMX, 17/17 nodes clear. No post-op chemo or radiation indicated. NED!
10/11: NED! Continue Herceptin indef.
2/12: Reoccurence of liver mets; both lobes. Tykerb added to Herceptin.
5/12: Progression of liver mets. Stop Tykerb, start Abraxane & Herceptin weekly.
8/12: Progression in liver and lymph nodes around liver and right kidney. Herceptin not working anymore! Stop Abraxane and Herceptin. Start Tykerb and Xeloda.
10/12: Severe side effects. 3 weeks break from everything.
12/12: It's working! All tumors gone except 2 (from 20+) Continue Tykerb and Xeloda. Brain and spine MRIs clear.
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Old 10-06-2012, 06:31 AM   #2
Lori R
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Re: Start, stop, start, stop

Vicki,
So sorry to hear of the difficulties you are having with the X/T. There are others on the board with my info than myself so I hope they quickly chime in.

I was not on X/T, but my onc added Tykerb to Herceptin hoping that would do the trick. (it didn't). I faced a serious case of the trots and it REALLY took in out of me (no pun intended).

I was able to get it under control with large doses of Immodium. Has your onc. informed you have how much you can take? I was amazed at how much they recommended.

If Immodium doesn't get it under control, there are prescription drugs. Are you on one of those? If not, request it. I could not keep myself properly hydrated which negatively impacts so many functions in our system.

I can't add anyhting for the challenging Xeloda impacts.

I certainly hope your efforts pay off!!! Maybe push for an earlier than usual scan, so that you can move on if this isn't the ticket.

Lori
__________________
2007
Oct - Diagnosed - Stage IV
5 c.m. IDC - Left Side er/pr- Her2+++
Node + 2/14 - Single Liver Met
Double Mastectomy
Nov - Begin T+H
2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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Old 10-06-2012, 08:25 AM   #3
Nancy L
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Re: Start, stop, start, stop

Vicki,

When Herceptin alone stopped working for me, Dr Slamon added Tykerb. He started with 4 pills but I had a severe allergic reaction--hives all over my body. So he lowered me to three pills a day which I was on for 3 1/2 years. But I think it only was working for 2 1/2 years based on all my problems before my second reoccurrence was finally detected on scans in June.

I had diarrhea the entire time I was on Tykerb. Somedays it was worse than others but always present. I took lots of Lomotil, almost everyday. I wish I knew a magic formula to stop this side effect but I never found one. I hope someone else on this site has one for you.

Nancy
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Old 10-06-2012, 08:28 AM   #4
NanaJoni
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Re: Start, stop, start, stop

Lomitil is better than immodium and there is also a drug called levbid that can be taken along with the lomotil.
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Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
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Old 10-06-2012, 01:59 PM   #5
Emy
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Re: Start, stop, start, stop

I took herceptin from sept 2011 to may 2012 ..then it stopped working..now, in addition to herceptin I am taking 6 pills of tykerb 1500 every day....diet helps manage the diarrhea...I eat activa yogurt every day, along with bananas, oatmeal and whole grain bread...as of today, my tumor markers are still down...31...one month ago, my hair really thinned out all of a sudden lost about 50percent of my hair..use hydrocortisone cream for rash on my chest...hope this helps
__________________
Eileen's history her2+, er+,pr-, Pk13 mutation
Feb 2017. Herceptin and perjeta ..still ned
Oct 2015 dendritic cell vaccine university of Pennsylvania..6 weekly injections...boosters every 3 months
July 2015 stopped weekly taxol (2.5 years of weekly taxol) still on herceptin perjeta every 3 weeks..still ned
Jun 2014 liver ablation of 1 liver tumor..now ned
Jun 28, 2013 ca15-3 24, cea 3.8... Pet scan showed 2 liver tumors with intensity of 2.7 and 2.5 (11/13 intensity was 8.0)
Jan 2013 herceptin, perjeta every 3weeks, taxol weekly
Jan 2013 MRI showed 3 liver tumors doubled in size ca-15 is 55 end of month 71, cea 7
Dec 2012. Pet scan showed single liver nodule, having MRI liver on dec18th...MRI liver 3tumors... on herceptin, tykerb , fulvestrant ca-15-3 is 42
Sept 2012 ca-15 went from 85 to 35, pet scan showed decrease
May 2012 herceptin every 3 weeks, 1500 tykerb daily (6pills) and fulvestrant every 3 wks
May 2012 herceptin stopped working ca-15 is 85
Sept 2011 started herceptin every 3 wks and femara daily..mets to liver. Bone and lymph nodes
2011 liver mets...all samples from 2001 and 2010 reviewed...her2 positive, fish 5.4. Er positive, prog neg. Stage 4 breast ca...never was lung cancer
2010 16 weeks of chemotherapy for lung cancer (incorrect). Carboplatin and vinalbine...was actually breast ca mets
2010 misdiagnosed with lung cancer ..2cm tumor removed..lower right lobe removed
2001-2006 tamoxifen
2001. Ductal ca. Rt mastectomy
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Old 10-06-2012, 02:17 PM   #6
pwiswell
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Re: Start, stop, start, stop

I too am having a hard time adjusting to the x/t combination with the same side effects. My onc just lowered my dose of xeloda, and I just restarted it. The trots have been with me since I started the tykerb. Just one of those things I have to live with. Immodium does help me some, but I have to work at staying hydrated. I try to drink a lot of Gatorade. This helps.
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Old 10-13-2012, 11:28 AM   #7
Mtngrl
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Re: Start, stop, start, stop

I'm not on Xeloda, just Tykerb and Herceptin. It's been about 4 months. I take a probiotic supplement every day, and I make my own Greek yogurt and eat some every day. I also think high fiber helps me--popcorn, whole grain bread, brown rice, oatmeal, sweet potatoes with the skin, legumes, etc. I take it at night so that if there is going to be diarrhea it happens first thing, not while I'm out and about. Before I started the probiotic I had diarrhea almost half of the mornings. It's down to about 20 to 25% now, and I can get it right under control with one normal dose of Immodium.

That being said, my onc. says I'm the first patient of hers who has been able to tolerate it. So it's different for different people. Hydration is important, but I really think friendly intestinal bacteria help immensely.
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Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 10-16-2012, 07:33 AM   #8
nanblaine
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Re: Start, stop, start, stop

I'm sorry to be so ignorant but what do you all mean when you say, "when the herceptin stopped working"? How do you know it's not working unless the cancer comes back? Is there a way to check if it's working or not?
I had never heard of this tykerb stuff and pray I will not need it. What is it suppose to do?
Thanks, Nanci
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Old 10-17-2012, 06:41 PM   #9
Emy
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Re: Start, stop, start, stop

The cancer becomes resistant to the drug, so it stops working and the cancer grows...herceptin and femara stopped working for me, so now I am on herceptin, tykerb 1500mg and fulvestrant....tumor markers went down and scan was better.....
__________________
Eileen's history her2+, er+,pr-, Pk13 mutation
Feb 2017. Herceptin and perjeta ..still ned
Oct 2015 dendritic cell vaccine university of Pennsylvania..6 weekly injections...boosters every 3 months
July 2015 stopped weekly taxol (2.5 years of weekly taxol) still on herceptin perjeta every 3 weeks..still ned
Jun 2014 liver ablation of 1 liver tumor..now ned
Jun 28, 2013 ca15-3 24, cea 3.8... Pet scan showed 2 liver tumors with intensity of 2.7 and 2.5 (11/13 intensity was 8.0)
Jan 2013 herceptin, perjeta every 3weeks, taxol weekly
Jan 2013 MRI showed 3 liver tumors doubled in size ca-15 is 55 end of month 71, cea 7
Dec 2012. Pet scan showed single liver nodule, having MRI liver on dec18th...MRI liver 3tumors... on herceptin, tykerb , fulvestrant ca-15-3 is 42
Sept 2012 ca-15 went from 85 to 35, pet scan showed decrease
May 2012 herceptin every 3 weeks, 1500 tykerb daily (6pills) and fulvestrant every 3 wks
May 2012 herceptin stopped working ca-15 is 85
Sept 2011 started herceptin every 3 wks and femara daily..mets to liver. Bone and lymph nodes
2011 liver mets...all samples from 2001 and 2010 reviewed...her2 positive, fish 5.4. Er positive, prog neg. Stage 4 breast ca...never was lung cancer
2010 16 weeks of chemotherapy for lung cancer (incorrect). Carboplatin and vinalbine...was actually breast ca mets
2010 misdiagnosed with lung cancer ..2cm tumor removed..lower right lobe removed
2001-2006 tamoxifen
2001. Ductal ca. Rt mastectomy
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Old 10-17-2012, 11:19 PM   #10
Joanne S
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Re: Start, stop, start, stop

Vicki, Hope you're feeling better! Hugs, Joanne
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Old 10-19-2012, 10:22 PM   #11
Donna Sue in Texas
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Re: Start, stop, start, stop

Hey Vicki,

I feel for you girl. I'm still on the x/t. 5/500 mg Tykerb in the a.m. Followed by 3 Xeloda in the a.m. And 2 in the p.m. I had been doing 4 & 3 but my last PET showed I was stable (no new cells) so I started back on Monday at a reduced dose to see if that will help with my feet. I had taken a 4-week break and they cleared up just fine. Too early to tell how they will do now. The diarrhea from the Tykerb is awful. I take Lomotil and Immodium. But the diarrhea is still there I just can control it enough to get to a bathroom. As far as the feet, I use lots of cream which doesnt stop the reaction but soothes them a little. I couldn't even wear closed in shoes before. They were so red on the bottom they looked purple. Had a real hard time walking too. If it gets that bad again we will tweak it some more and if that doesn't help I will have to switch to something else.

I was able to really enjoy my trip to Big Bend on my break from it, after I could finally put on my hiking shoes.

Good Luck & God Bless

Donna Sue
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Dx July 2011 Stage IV HER2 +++
BiLateral Mastectomy Aug/2011
Cells in lymphs neck & stomach
6 cycles of TCH ended January 2012 NED
Continue Herceptin every 3 wks
May 2012 cells back in lymphs
Started Xeloda w/Herceptin
No improvement after 3 cycles
8/9/12 Xeloda/Tykerb started & discontinue Herceptin
10/9/12 cells in lymph stable nothing new
01/08/13 two new cells SUV uptake on existing cells going up. Change of treatment to come
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Old 11-11-2012, 09:32 PM   #12
dchips1
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ReTykerb check drug reactions of RX and OTC

Hi ladies,
www.drugs.com is a web sit to input and save your medication lists and update changes, and check for interactions between meds including Tykerb, Xeloda.

search around some of the older posts. Some people are helped by following an IBS diet (irritable bowel diet). Citruce, I take the pill form with lots of water or powerade (has more potassium the Gatorade)
Walmart, now makes a generic brand. WAY CHEAPER!!!! I take Citrucel in the morning (pills), Use the loperamide as needed. Apple pectin in capsule form. Both helps absorb fluid into your intestines as well. Simithicone for bloating and gas. Probiotics, acidophilus, and lactaid pills have helped as well.

Bentyl is a RX drug, it slows down to "rush" but you can't take too much or your bowels will get lazy.
When all else failed I bought a natural diarrhea pills, Contains charcoal, apple pectin and Kaolin clay. Plugs it up pretty good. CAUTION you have to take between other meds, the charcoal can absorbs other medications and makes it ineffective. But is you are like me after 3 days of in the top and immediately out to other end. What good is the medicine doing if it just wasted into the bathroom dances!! Sometimes when I am bad get extra fluids from Onc office.

NO NO"S
include chewing gum, carbonated drinks, not drinking enough water and other fluids, eat small meals throughout the day, instead of large heavy meals.

Good Luck and prayers for healing

Darita
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain

1/29/14 HIHO HIHO its off to Neuro surgery I go





Life is Good when you wake up in the morning and take a breath and know that God has given me another day.


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Old 01-18-2013, 08:43 PM   #13
Vicki revised
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Posts: 121
Re: Start, stop, start, stop

Thanks everyone. Over the holidays I got an acute case of stomatitis (mouth sores) that was even in my throat. I cooked a big meal Christmas which the family enjoyed while I ate the teaspoon of mashed potatoes I was able to tolerate. Magic mouthwash didn't give much relief so I starved for 2 weeks and lost 5 lbs. that was worse than anything so far.
__________________
Vicki
Lord, give me the comfort of Your embrace and acceptance of Your will.

3/11: DX: IDC, HER2++, ER/PR neg, stage 4, mets to liver. Primary tumor: grade 3; 11 cm. 2nd smaller tumor: ~2.5cm. Multiple affected nodes, 1 spot on liver. 6 rounds TCH prior to bmx.
7/11: Nothing left except Primary breast tumor now 1.5cm.
8/11: BMX, 17/17 nodes clear. No post-op chemo or radiation indicated. NED!
10/11: NED! Continue Herceptin indef.
2/12: Reoccurence of liver mets; both lobes. Tykerb added to Herceptin.
5/12: Progression of liver mets. Stop Tykerb, start Abraxane & Herceptin weekly.
8/12: Progression in liver and lymph nodes around liver and right kidney. Herceptin not working anymore! Stop Abraxane and Herceptin. Start Tykerb and Xeloda.
10/12: Severe side effects. 3 weeks break from everything.
12/12: It's working! All tumors gone except 2 (from 20+) Continue Tykerb and Xeloda. Brain and spine MRIs clear.
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