THE WELCH COMPANY
440 Davis Court #1602
San Francisco, CA 94111-2496
415 781 5700
S U M M A R Y
DIARY: October 7, 2004 03:29 PM Thursday;
Jeannie explains experience recovering from IBC and 2nd opinion.
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Diagnosis IBC Distant Metastasis Treatment Options 2nd Opinion Recei
IBC Diagnosis Treatment History Other Patients Options 2nd Opinion V
2nd Opinion Verify Scope of Problem and Treatment Planning Tumor Boa
2nd Opinion Requested from UCSF, Stanford, UC Davis Cancer Centers
1106 - ..
1107 - Summary/Objective
110801 - Follow up ref SDS 2 0000, ref SDS 1 0000.
110803 - Received ref DRT 1 0001 from Jeannie answering the question asking for
110804 - Jeannie's history that led to getting a 2nd opinion, which can help
110805 - Millie make this decision in her case, per our telecon yesterday.
110806 - ref SDS 2 RK93
110808 - 1. I was diagnosed in August of 1999. I was a member of Kaiser
110809 - then. Kaiser contracted with Duke University Hospital. For
110810 - some reason the doc that diagnosed me sent me to another onc in
110811 - Durham. (probably his golf buddy). Anyway, he was going to
110812 - treat me with taxol and carboplatin or cisplatin (can't
110813 - remember which). I was just going to do whatever he said
110814 - because I just did not want to make a decisions. I just wanted
110815 - to wake up and it would all be over. ref DRT 1 BO5M
110817 - ..
110818 - This seems to be a common reaction of the patient becoming compliant
110819 - hoping the hospital will take effective action.
110821 - ..
110822 - Jeannie contineus...
110824 - 2. One of my friends at work was a patient of Dr. Mark Graham at
110825 - UNC Med School. She called him and he called me and had me
110826 - come over to UNC the next day. They have a team approach at
110827 - the Breast Center and you see all the docs-- surgeon, radiation
110828 - onc, and regular onc. Kaiser did not contract with UNC, so
110829 - that was out of pocket. Anyway, Mark said I should go to Duke,
110830 - he would coordinate the treatment with the onc there. He was
110831 - looking for patients for a clinical trial of
110832 - adriamycin/cytoxan followed by herceptin/taxol. So he wanted
110833 - me to find out from Duke (where Kaiser would pay for
110834 - everything) if I was her2neu positive. her2neu is a protein on
110835 - the surface of cells, and some cancer cells have extra
110836 - molecules of the protein on the surface. Herceptin recognizes
110837 - those cells and attacks them. It was the first genetically
110838 - engineered antibody for cancer. Turned out I was positive.
110839 - ref DRT 1 8O6K
110841 - ..
110842 - Millie is her2/neu negative, reported on 020306.
110844 - ..
110845 - Jeannie continues...
110847 - 3. Anyway, I took myself to Duke and started the treatment with
110848 - A/C. That was once every 3 weeks for 4 treatments, starting in
110849 - August. So that went through November. ref DRT 1 IO8G
110851 - ..
110852 - 4. Every October we (state employees) can change our insurer. So
110853 - I switched to the fee for service plan that October. That gave
110854 - me the option of using either Duke or UNC. ref DRT 1 TO8L
110856 - ..
110857 - 5. At the end of the AC, Duke was evaluating me for surgery.
110858 - There was still a tumor in my breast, although shrunken. (I was
110859 - dx IIIB- with CA in the axillary nodes). And nodes were
110860 - shrunken, but still there. ref DRT 1 5P9G
110862 - ..
110863 - 6. I wanted to be on Mark Graham's trial, so I switched to UNC in
110864 - November. Duke was not all that excited about herceptin since
110865 - both Adriamycin and herceptin can be heart toxic. They cannot
110866 - be given together, so this trail was to see if they can be
110867 - given in sequence, not do too much damage to the heart, and see
110868 - how effective the regime is. So I was at UNC and had 12
110869 - treatments of herceptin and taxol. That ended at the end of
110870 - January, and I had a modified radical mastectomy in February,
110871 - 2000. ref DRT 1 EP9L
110873 - ..
110874 - 7. Well, glory be, the tumor was dead and all 29 lymph nodes were
110875 - clean. I sorely miss the nodes, since I have mild lymphedema.
110876 - But, the point is, the chemo destroyed the cancer in the lymph
110877 - nodes. And I had no significant heart damage. Everyone was
110878 - shocked and they actually did a grand rounds on me. ref DRT 1
110879 - BQ4K
110881 - [On 060106 Millie preliminary diagnosis lymphedema, and
110882 - research indicates this is serious, no cure. ref SDS 3 SS6K
110884 - ..
110885 - 8. The trial continued with radiation for 5 or 6 weeks, followed
110886 - by 40 more rounds of herceptin weekly, with no taxol. That was
110887 - very easy. ref DRT 1 TQ5H
110889 - ..
110890 - 9. Since I did not want to get this dread disease again, I had a
110891 - simple mastectomy on the left side in Feb of 01. ref DRT 1 4R5L
110893 - ..
110894 - 10. Then I got sick of prostheses, and had reconstruction with just
110895 - the skin and fat from my abdomen done in October of 02. That
110896 - was a great idea, as there is no collateral damage. ref DRT 1
110897 - QR6F
110899 - ..
110900 - 11. So, points of all this is:, ref DRT 1 5S6K
110902 - ..
110903 - 12. The 3 places I went had 3 different treatments. I had to take
110904 - the initiative to decide to go for the most aggressive plan.
110905 - Chemo can kill the cancer- really kill it. Before taxol was
110906 - invented there was very little hope with IBC. ref DRT 1 JS6N
110908 - ..
110909 - It is possible to recover and live a normal HEALTHY not in
110910 - treatment life. I have almost forgotten that all this really
110911 - happened. Just have the lymphedema to remind me. If one drug
110912 - regime loses its effectiveness, switch to another. It does not
110913 - mean it is all over. ref DRT 1 ST3I
110915 - [On 060106 Millie preliminary diagnosis lymphedema, and
110916 - research indicates this is serious, no cure. ref SDS 3 SS6K
110918 - ..
110919 - 13. So, any more questions, please email me. I hope all goes well
110920 - for you, Millie. ref DRT 1 LU3O