| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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10-02-2010, 02:14 PM
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#1
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Senior Member
Join Date: May 2010
Location: Ireland
Posts: 271
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Self Diagnosis
I am on tyverb/xeloda daily plus 3 weekly herceptin for mets to skin, chest and lung. Last scan showed lung mets shrinking and I can see the skin mets disappearing with each herceptin dose.
I am trying to keep my EF up so started to exercise, walking and skipping. Am not great at skipping, can only do 20 skips at a time. I do not get breathless but afterwards I feel a tightening in my chest, as if theres something wrong inside my ribs. Had a check up in radiotherapy dept last week and Doc does not think its mets to rib. He sent me for chest x-ray, will get results next week.
I think maybe the xeloda has stopped working and maybe my lungs are getting worse. Would not mind being taken off xeloda as my hands and feet are in a terrible state. I am using Udderly Smooth and Compeed blister packs but I am glad the cold weather is coming because I really need to wear gloves constantly or I leave blood marks everywhere. I think I will request Navelbine. I have another check up on Friday next.
I did a search here but people who have had lung mets all seem to have very different symptons.
I would like to stay on Tyverb and Herceptin with the Navelbine. Has anyone had this combination and did it work? Anyone think my self diagnosis is totally wrong?
__________________
Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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10-09-2010, 07:04 AM
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#2
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Senior Member
Join Date: May 2010
Location: Ireland
Posts: 271
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Re: Self Diagnosis
I will just have to stop with the self diagnosis as I got it WRONG! The xeloda is still working (great), also I feel so much better this week, I am putting the sensation in/behind my ribs down to aches and pains from Herceptin.My hands and feet are still like broken parchment but oh well, I can deal with that.
__________________
Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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10-09-2010, 07:14 AM
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#3
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Senior Member
Join Date: Aug 2009
Location: Moultrie, GA
Posts: 431
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Re: Self Diagnosis
I am so glad you are feeling better. I have not had experience with mets, so I cannot offer advice. I just wanted you to know that someone is praying for you.
Sandra
__________________
Diagnosed: 7/25/08 ~ age 63, no family history
Surgery: 8/14/08 Bilateral mastectomy; tumor left breast, node dissection; right prophylactic with expanders: 1/12/10 latisimuss dorsi flap on left side: 9/22/10 implants in
Pathology Report: ER/PR-; HER2+ (3+); Grade 3, StageIII; 3cm tumor plus 21/21 lymph nodes positive; 5cm DCIS
Chemo: A/C; Taxol/Herceptin/Tykerb; phase II study at Mayo adding Tykerb for early stage
Radiation: 25 rads
Vaccine: Walter Reed GP2/AE37 vaccine study ~ last booster 9/17/2012
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10-09-2010, 10:29 AM
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#4
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Self Diagnosis
I also want to add that rib pain, although should not be ignored, seems to be a big problem with many of us (especially those of us who have had radiation). I experienced it alot early during recovery but still get jabs now - 6 years out!
Also, when it does get colder, my scars ache which my rad onc (who I just saw) says is very natural (as did my surgeon of whom I only had biannual check ups for the first 2 yrs - just saying in case you get scar pulling or pain).
However, I think until you know your own specific (natural) aches and pains, you need to always consult your medical team.
I am thinking about you. Perhaps you should post on the Her2 part about skin remedies for Xeloda side effects. Many women check only that part of the board and many ladies have used Xeloda and have their own methods of dealing with the hand/foot syndrome. Maybe one of their remedies may really help you out.
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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10-09-2010, 12:16 PM
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#5
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Member
Join Date: May 2010
Location: Suburb of Baltimore, MD
Posts: 23
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Re: Self Diagnosis
Dulaney,
I am really glad to hear you are feeling better. I have been thinking about and praying for you too. I am really hoping and praying for continued success with your current combination of medicines.
Love,
Carolyn
__________________
1/10 Diagnosed with IDC; 3.7 cm tumor
3/10 Left Radical Masectomy; 2 /16 nodes positive - Grade 3 ER+/PR-/HER2+++
4/10 BRCA1 and BRCA2 both negative
4/10 Pet Scan showed another node .07mm positive on the internal mammary area
4/10 ALLTO Trial - randomized for Arm 4 - Taxotere/Carboplatin and Herceptin only (no Tykerb) Began 6 cycles Taxotere/Carboplatin (every three weeks) and Herceptin weekly for eighteen weeks and then every three weeks until the end of April 2011
Radiation to begin 9/2010
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10-10-2010, 04:49 PM
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#6
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Self Diagnosis
So glad to hear the update.
My oncologist had told me one time that because of the surgery, my chest muscles and ribs 'moved' slightly for adjustment. He believes that's the reason for the 'weird' sensation I have had in that area.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
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Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
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10-11-2010, 08:47 AM
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#7
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Senior Member
Join Date: May 2010
Location: Ireland
Posts: 271
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Re: Self Diagnosis
Jackie, thats exactly the sensation I feel, as if my ribs have moved. When I lie on my side it feels as if there is something moving, I told the doctor it felt like there was a snake in my ribs. I should have kept it simple and just said I felt movement. I think I have chemo brain, cant seem to express myself properly. Thanks everybody for your input.
__________________
Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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