Lyn
01-18-2005, 04:07 AM
Hi, had to share this, found on another site and discusses Herceptin?
Becky's Story
This is written for the newbies and/or those that find that "things" can happen very shortly after completion of treatments, not necessarily five or six years later. IBC can occur in both breasts. I am living proof that a second dx is not necessarily as bad as it sounds.
July - Oct 00 (the beginning)
I felt that something was wrong with my left breast. My breast was swollen, hot and sore from being so swollen. As I was coordinating a major event for the first week in August, I said as soon as this was over I would have it checked out. I saw doc and was sent for mammo. Neither the mammo or ultrasound showed any tumor or mass. A needle biopsy with ultrasound assist was done on 19 Oct 00. CANCER. On 20 Oct had first of many visits with onc. I began chemo the following week as soon as I had bone scans, CT scans, and an excisional biopsy that confirmed Inflammatory Breast Cancer, ER/PR-, Her2 neu 3+ . Poor prognosis. I completed 4 cycles of CAF given every three weeks with Neupogen to keep my white count from becoming too low. Breast looked very normal after first chemo, no more swelling or redness. I lost my hair, had sore mouth and my energy levels were gradually decreasing. I continued to work full time.
Jan - July 01
I had a left MRM in Jan 01. Path said clear margins and 4 positive nodes. I had 4 more cycles of CAF (one was CMF as I was nearing my limit of Adriamycin). Hair comes back and leave wig off in June. I began 6+ weeks of radiation to my left chest, underarm and neck that were completed in July 01. Some burns the last week of rads. I heal nicely in about 2 weeks. Onc said that I was NED since my MRM in Jan. Began to get some energy back and continue to work full time but have used all my sick and annual leave time. I take 12 weeks of unpaid leave (Family Medical Leave Act).
Oct 01-Mar 02
In Sept I began to feel that my remaining breast did not feel right. It was not swollen or red. It had a hardness under the nipple. I told my onc in Oct that maybe I was being paranoid but I felt the right breast was not right. He checked it and said to be on the safe side that he was scheduling me for a mammo and ultrasound. Mammo and ultrasound reported all clear.
I continued to feel that the breast was getting harder under the nipple. It felt as if it had a hard spot about the size of a ping-pong ball under the nipple and the nipple was such that it seemed that the "strings" below had been shortened. In Mar 02, I tell my onc once again that my breast is still feeling strange. He looks at it and notes the skin that appears to have many tiny broken capillaries and the nipple is flattening. Another mammo and ultrasound is scheduled for the next day. I get as far as the mammo and the tech tells me that the ultrasound is not needed but I need to contact my onc. She shows me the mammo films and the microcalcifications that are the evidence of cancer. I cry. Cancer again and so soon. I have not really recuperated after the treatments for the first IBC breast. I see my onc and we discuss the treatment plan. I had a punch biopsy done by my MRM surgeon and have him insert a port the following week. I get chemo (Taxotere and Herceptin). I do not even want to wait for the port.
Apr 02 - Jan 03
It is IBC again! Everyone is surprised! IBC in the remaining breast. The biopsy shows ER/PR- and Her2 neu 3+. Why is this not a metastatic event? I am told that there is no evidence that there are cancer cells outside the second breast and nodes. If it was mets there should be other sites with breast cancer. The bone and CT scans are clear. It is very unusual I am told ... very unusual. There are no set standards for this second primary IBC. I have already had my limit of Adriamycin. We decide upon 12 weekly treatments of Taxotere/Herceptin. Hair thins and nails look like they have all been crushed in the car door and some peripheral neuropathy. Herceptin continues on weekly schedule. I continue to work until the week of my second MRM. I have the MRM on 1 July 02. Path report clean margins and 6+ nodes. 6 nodes??? Once again, not a good prognosis with 6+ nodes.
I once again have 6+ weeks of radiation on the right side this time. No burns this time. Still taking Herceptin weekly. Rads completed on 25 Sept. On 26 Sept I have an episode of being very short of breath. I call the onc nurse and tell her that I have all the symptoms of Congestive Heart Failure. MUGA confirms it. I have CHF! All chemo is put on hold until they can get my CHF under control. I respond well to the meds and my heart function increases. (I now have a cardiologist!)
I begin Taxotere/Xeloda in Oct 02, no more Herceptin for now. I am a little smarter this time and take Vit B - 6 and Celebrex to prevent hand/foot syndrome and peripheral neuropathy and put my fingertips between ice packs during Taxotere infusion. I chew ice and mouth is fine too! I lose my hair again and dig out the old wig from storage.
As my treatments are nearing the end, my onc sends me for a PET scan two days before Christmas. It comes back all clear! I complete my Xeloda on 5 Jan 03. No more chemo; I am done! I go in monthly and have my port flushed and CBC done occasionally. My onc always wants to see me too. He wants to follow me very closely. I apply and am approved for SSD and then civil service disability retirement . No more job.
April - Sept 03
My onc sends me (kicking and screaming) for a bone scan and CT scans of the chest and abdomen in April 03. I tell him that I do not need then as I just had the all clear PET in Dec! (I finally agree ... just to placate my onc.) They both came back all clear ... no mets! My onc says that IBC seems to metastasize early, within the first two years or so. I ask which IBC occurrence do I use? My first IBC was in Oct 2000 and the second in March 2002. Having two primary IBC breasts is "unusual". My onc is very pleased (as am I) that I have responded so well to treatments. I am now seeing my energy level increase. I no longer take 2-3 naps each day. Guess this means that will have to clean my house. I "almost" have the feeling as if I can breathe again. I feel as though I have been holding my breath for so long. Now it is time to begin thinking about scans once again.
Becky Rosen
Hudson Valley of NY
Becky's Story
This is written for the newbies and/or those that find that "things" can happen very shortly after completion of treatments, not necessarily five or six years later. IBC can occur in both breasts. I am living proof that a second dx is not necessarily as bad as it sounds.
July - Oct 00 (the beginning)
I felt that something was wrong with my left breast. My breast was swollen, hot and sore from being so swollen. As I was coordinating a major event for the first week in August, I said as soon as this was over I would have it checked out. I saw doc and was sent for mammo. Neither the mammo or ultrasound showed any tumor or mass. A needle biopsy with ultrasound assist was done on 19 Oct 00. CANCER. On 20 Oct had first of many visits with onc. I began chemo the following week as soon as I had bone scans, CT scans, and an excisional biopsy that confirmed Inflammatory Breast Cancer, ER/PR-, Her2 neu 3+ . Poor prognosis. I completed 4 cycles of CAF given every three weeks with Neupogen to keep my white count from becoming too low. Breast looked very normal after first chemo, no more swelling or redness. I lost my hair, had sore mouth and my energy levels were gradually decreasing. I continued to work full time.
Jan - July 01
I had a left MRM in Jan 01. Path said clear margins and 4 positive nodes. I had 4 more cycles of CAF (one was CMF as I was nearing my limit of Adriamycin). Hair comes back and leave wig off in June. I began 6+ weeks of radiation to my left chest, underarm and neck that were completed in July 01. Some burns the last week of rads. I heal nicely in about 2 weeks. Onc said that I was NED since my MRM in Jan. Began to get some energy back and continue to work full time but have used all my sick and annual leave time. I take 12 weeks of unpaid leave (Family Medical Leave Act).
Oct 01-Mar 02
In Sept I began to feel that my remaining breast did not feel right. It was not swollen or red. It had a hardness under the nipple. I told my onc in Oct that maybe I was being paranoid but I felt the right breast was not right. He checked it and said to be on the safe side that he was scheduling me for a mammo and ultrasound. Mammo and ultrasound reported all clear.
I continued to feel that the breast was getting harder under the nipple. It felt as if it had a hard spot about the size of a ping-pong ball under the nipple and the nipple was such that it seemed that the "strings" below had been shortened. In Mar 02, I tell my onc once again that my breast is still feeling strange. He looks at it and notes the skin that appears to have many tiny broken capillaries and the nipple is flattening. Another mammo and ultrasound is scheduled for the next day. I get as far as the mammo and the tech tells me that the ultrasound is not needed but I need to contact my onc. She shows me the mammo films and the microcalcifications that are the evidence of cancer. I cry. Cancer again and so soon. I have not really recuperated after the treatments for the first IBC breast. I see my onc and we discuss the treatment plan. I had a punch biopsy done by my MRM surgeon and have him insert a port the following week. I get chemo (Taxotere and Herceptin). I do not even want to wait for the port.
Apr 02 - Jan 03
It is IBC again! Everyone is surprised! IBC in the remaining breast. The biopsy shows ER/PR- and Her2 neu 3+. Why is this not a metastatic event? I am told that there is no evidence that there are cancer cells outside the second breast and nodes. If it was mets there should be other sites with breast cancer. The bone and CT scans are clear. It is very unusual I am told ... very unusual. There are no set standards for this second primary IBC. I have already had my limit of Adriamycin. We decide upon 12 weekly treatments of Taxotere/Herceptin. Hair thins and nails look like they have all been crushed in the car door and some peripheral neuropathy. Herceptin continues on weekly schedule. I continue to work until the week of my second MRM. I have the MRM on 1 July 02. Path report clean margins and 6+ nodes. 6 nodes??? Once again, not a good prognosis with 6+ nodes.
I once again have 6+ weeks of radiation on the right side this time. No burns this time. Still taking Herceptin weekly. Rads completed on 25 Sept. On 26 Sept I have an episode of being very short of breath. I call the onc nurse and tell her that I have all the symptoms of Congestive Heart Failure. MUGA confirms it. I have CHF! All chemo is put on hold until they can get my CHF under control. I respond well to the meds and my heart function increases. (I now have a cardiologist!)
I begin Taxotere/Xeloda in Oct 02, no more Herceptin for now. I am a little smarter this time and take Vit B - 6 and Celebrex to prevent hand/foot syndrome and peripheral neuropathy and put my fingertips between ice packs during Taxotere infusion. I chew ice and mouth is fine too! I lose my hair again and dig out the old wig from storage.
As my treatments are nearing the end, my onc sends me for a PET scan two days before Christmas. It comes back all clear! I complete my Xeloda on 5 Jan 03. No more chemo; I am done! I go in monthly and have my port flushed and CBC done occasionally. My onc always wants to see me too. He wants to follow me very closely. I apply and am approved for SSD and then civil service disability retirement . No more job.
April - Sept 03
My onc sends me (kicking and screaming) for a bone scan and CT scans of the chest and abdomen in April 03. I tell him that I do not need then as I just had the all clear PET in Dec! (I finally agree ... just to placate my onc.) They both came back all clear ... no mets! My onc says that IBC seems to metastasize early, within the first two years or so. I ask which IBC occurrence do I use? My first IBC was in Oct 2000 and the second in March 2002. Having two primary IBC breasts is "unusual". My onc is very pleased (as am I) that I have responded so well to treatments. I am now seeing my energy level increase. I no longer take 2-3 naps each day. Guess this means that will have to clean my house. I "almost" have the feeling as if I can breathe again. I feel as though I have been holding my breath for so long. Now it is time to begin thinking about scans once again.
Becky Rosen
Hudson Valley of NY