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Old 08-29-2009, 04:15 PM   #1
Julie2
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update on me

I just got my recent PET/CT scan results after 2 cycles of Navelbine with Herceptin. The two hilar nodes reduced in SUV from 3.4 to 1.8 and from 3.0 to 1.4 and the mediastinal node is completely resolved. I am totally exhausted and my RBC went very low. This is my 3rd time on Navelbine in two years. Each time I used Navelbine only for 2 or 4 cycles. But this time looks like because of cumulative chemo usage the body was hardly hit.
I am in dilemma now whether to discontinue Navelbine and just stay on Herceptin or use it for 1 more cycle. I had progression after 9 months on Herceptin and Tykerb.
Looking for some non-chemo options. Please suggest any ideas.

Thanks,
Julie
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Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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Old 08-29-2009, 06:21 PM   #2
Becky
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Re: update on me

Can you get into the T-DM1 trial. This might be the ticket for you.
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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!

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Old 08-29-2009, 09:19 PM   #3
Jackie07
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Re: update on me

Have you ever been given the booster shots to increase your blood count? Could you get blood transfusion so you can continue the current treatment since it's working quite well?

Using Herceptin only might be good since the previous effect might continue for a while and you probably will still see more shrinkage without using those chemo drugs.
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Last edited by Jackie07; 08-29-2009 at 09:22 PM..
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Old 08-30-2009, 03:53 PM   #4
ElaineM
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Wink Re: update on me

Just thought I would pass along a little tip I used during chemo and Herceptin treatment. I never had to have a blood transfusion or shots to help my blood counts. I never had to skip treatments because my blood counts were too low.
If a person has a good appetite he or she might want to eat more vegetables and fruit, including lots of mushrooms (shitake, reishii, maitake,portabella and plain old white mushrooms) during chemo. These foods help the white blood count.
Good luck. Whatever you decide will be the right choice for you.
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Old 09-02-2009, 08:10 AM   #5
Joan M
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Re: update on me

Julie,

Can these nodes be surgically removed? Just wondering.

It seems they're the only areas of metastses.

If your onc says no, it might be worthwhile to ask a thoracic surgeon anyway. A friend from my local bc group had a mammary node removed surgically via her back (the surgeon said it was a "piece of cake"). It was the only area lighting up on PET/CT. She had tried chemo and radiation first, but it wouldn't go away. Afterward the cancer eventually spread to her lung, but that didn't have anything directly to do with the surgery. However, spread might not always be the case.

Surgery might be worth looking in to.

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 2023 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!

Last edited by Joan M; 09-02-2009 at 08:12 AM..
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