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Kaye · 10-15-2006, 08:07 AM

Rhonda, sorry I didn't get back to you sooner. As I mentioned my dx included pleomorphic invasive lobular. I also had IBC and high grade dcis with extensive comedo necrosis, 9 out of 12 pos. lymph nodes not matted together (although first CT scan report -- CT was done one week after surgery (bilateral mastectomy}--first intervention) said that there appeared to be remaining lymph nodes that were matted together. I was also ER+ and Her2+ I also had enlarged retroperitoneal nodes and an enlarged aorto-caval node. In addition there was a lesion in my liver (not definatively identified) and also had enlarged hilar nodes.
My treatments included: bilateral mastectomy, chemo (4 AC), rads, more chemo (2 Taxol and 2 Taxotere along with year of Herceptin), Arimidex, complete abdominal hysterectomy/oopherectomy. I then started taking Doxycycline and Celebrex, one month after starting Celebrex I increased it from 100 mg/twice/day to 200 mg/twice/day. I then started Zometa at half dose--to be given twice/year. 6 mos later after I had 2nd zometa, 2 months later I doubled Celebrex to 400 mg/twice/day, and began statin drug (Lovastatin). One month later I began having Zometa every 3 mos. at half dose. About a year and a half later I had a year of full dose Zometa and then it was again cut back to half dose.
How have I been doing? Well--it has been an interesting journey. About 2 mos. after I started Arimidex I had 3 unexplained attacks of acute pancreatitis--each 13 days apart. A 2nd opinion dr. thought those had something to do with the enlarged retroperitoneal nodes. My liver lesion increased during this time and there appeared to be a possible 2nd liver lesion. Again, the lesion was never biopsied or confirmed as to what it was. 5 weeks later tumor markers went whacky--CEA was above normal, CA 27-29 had gone up 10 pts (at highest end of normal), Testosterone level doubled and then went up 6 times normal (unless lab error), and became hypothyroid. Started taking thyroid meds--most levels returned to normal.
I then had hysterectomy the week after I stopped Herceptin. 3 weeks later, alkaline phosphatase leveled made highest jump and was at upper end of normal range--a few more pts and it would have been abnormal. This was when I doubled Celebrex and started Doxycycline.
I developed severe lower back pain--was excruciating. That started early on--within about 6 mos. of dx or possibly even before. It improved with Zometa. I also had sudden onset of severe sciatic pain at night. I was found to have a synovial cyst and/or cysts--reports said either mass or cyst. I was also found to have a soft tissue lesion in neck--thought to be metastatic--never tested. I had elevated CTC (circulating tumor cell test) but started probiotic therapy. Severe neck pain began to improve. Coincidental? I also had developed nodule in thyroid--results inconclusive. I was also found to have increased uptake in submandibular gland--was told it was a tumor. I had it removed. Results--contradictory. It was sent for tumor testing--privately--found to test positive for 7 different chemo combinations (Rational Therapeutics). Pathology report said it was benign. Rational Therapeutics informs you in 3 days if they don't have enough malignant cells to test. I was not informed--they had enough malignant cells. Pathology report said they received a "segment of the gland." The surgeon showed my husband the entire gland after it was removed and 'walked' it over to pathology himself as well as gave them the special kit to send to Rational Therapeutics.
At my pre-op appt., when surgeon gave me reports that said gland was benign, I asked him why path. report said they only received a 'segment' of the gland when he had shown husband ENTIRE gland and gave it to pathology himself. The color drained from his face and he was almost speechless. He hemmed and hawed and finally said he "didn't know."
Funny thing, about a month before I had found an article about our health provider--talked about how they manipulated test results--particularly those involving cancer...so who knows.
About a month later I re-did CTC (circulating tumor cell test), results were now "0." 6 mos. earlier results had been a "4." Anything >2 is suppposedly significant. Meanwhile neck pain was now gone.
Other unusual signs--blister-like rash across chest (non-malignant side)--appeared suddenly. Looked like shingles--but no pain. Dr. thought it looked like shingles. It was gone in a week. I had had weird bug-like bits (no itching that were not blister-like). I also had weird spreading rash on non-malignant side about 10 days after surgery--fit description of IBC rash. Surgeon removed small area and although reported results were 'benign', spreading process stopped. I later read that if large enough area not tested, one can get false negative results.
I should also mention that for about 3 to 4 years before dx I had developed swollen legs--no cause ever found but am not sure if 'right' or enough tests had been done. I also was anemic for about 4 or 5 yrs before dx. 9 mos. before dx I found hardened area in chest (within days of last normal mammo) that I had shown my ob-gyn--he flippantly reminded me that mammo of few weeks before had been normal and made me feel stupied for even showing him. Then about 6 mos. later I began having weird bowel symptoms. I was told to tell my regular dr. I did 3 mos. later. He just ordered standard 'sample.' Then after bc dx--just before mastectomy began to have significant rectal bleeding. It continued off and on until after last AC. I did have colonoscopy 4 mos. later that was then normal. Again at time of dx of bc I also had many enlarged retroperitoneal nodes--rept said it was not likely associated with b.c. Was that from the lobular bc or did I have a 2nd cancer? It was never determined. I have strong family hx of cancer--many died young w/breast cancer (youngest died at age 28). (My mom had 4 first cousins died from bc at young ages and her sister was dx'd at age 45). She had 2 aunts who died from bc as well. I was dx'd at same age as mom--50. I had uncle (paternal) dx'd with colon cancer in his 30's. My paternal grandmother died in her 40's from bc and another uncle died from melanoma. Yet, I tested negative for all known genes at time of testing.
I was dx'd 5.5+ yrs ago. My husband, former cancer researcher and 2nd opinion dr's, think I was stage IV at time of dx (although path report indicated stage IIb). As one 2nd opinion dr. mentioned, what was important was not necessarily 'stage' but treatment given. Then again, he indicated he would not necessarily have given me same treatment but didn't disagree w/it but then again would not tell us what he would have used--since treatment had already been started.
So, how am I doing. I am still here. I am working. I have ups and downs and have become hyper-vigilant. I have tried to learn everything I can about b.c. I do additional treatments--off-use of medication based on research. I also try to eat alot of vegetables and exercise. I don't know if the treatment I have received has always been the best but can't argue too much since I am still around despite my initial pathology report which suggested otherwise. There are a few things that still need to be taken care of. Oh---and forgot to mention I have had lymphedema from the very start-woke up with pain in my elbow after surgery. I have no idea why my elbow would have hurt. I have seen an OT and PT's and received treatment since. The lymphedema has progressed despite on-going treatment and custom sleeves. It's a royal pain but do-able.
Please excuse long message but wanted to give friend some encouragement and share what has worked for me. Take care and hope you/she are doing well.

10-15-2006, 08:07 AM	#10
Kaye Senior Member Join Date: May 2006 Posts: 52	Rhonda, sorry I didn't get back to you sooner. As I mentioned my dx included pleomorphic invasive lobular. I also had IBC and high grade dcis with extensive comedo necrosis, 9 out of 12 pos. lymph nodes not matted together (although first CT scan report -- CT was done one week after surgery (bilateral mastectomy}--first intervention) said that there appeared to be remaining lymph nodes that were matted together. I was also ER+ and Her2+ I also had enlarged retroperitoneal nodes and an enlarged aorto-caval node. In addition there was a lesion in my liver (not definatively identified) and also had enlarged hilar nodes. My treatments included: bilateral mastectomy, chemo (4 AC), rads, more chemo (2 Taxol and 2 Taxotere along with year of Herceptin), Arimidex, complete abdominal hysterectomy/oopherectomy. I then started taking Doxycycline and Celebrex, one month after starting Celebrex I increased it from 100 mg/twice/day to 200 mg/twice/day. I then started Zometa at half dose--to be given twice/year. 6 mos later after I had 2nd zometa, 2 months later I doubled Celebrex to 400 mg/twice/day, and began statin drug (Lovastatin). One month later I began having Zometa every 3 mos. at half dose. About a year and a half later I had a year of full dose Zometa and then it was again cut back to half dose. How have I been doing? Well--it has been an interesting journey. About 2 mos. after I started Arimidex I had 3 unexplained attacks of acute pancreatitis--each 13 days apart. A 2nd opinion dr. thought those had something to do with the enlarged retroperitoneal nodes. My liver lesion increased during this time and there appeared to be a possible 2nd liver lesion. Again, the lesion was never biopsied or confirmed as to what it was. 5 weeks later tumor markers went whacky--CEA was above normal, CA 27-29 had gone up 10 pts (at highest end of normal), Testosterone level doubled and then went up 6 times normal (unless lab error), and became hypothyroid. Started taking thyroid meds--most levels returned to normal. I then had hysterectomy the week after I stopped Herceptin. 3 weeks later, alkaline phosphatase leveled made highest jump and was at upper end of normal range--a few more pts and it would have been abnormal. This was when I doubled Celebrex and started Doxycycline. I developed severe lower back pain--was excruciating. That started early on--within about 6 mos. of dx or possibly even before. It improved with Zometa. I also had sudden onset of severe sciatic pain at night. I was found to have a synovial cyst and/or cysts--reports said either mass or cyst. I was also found to have a soft tissue lesion in neck--thought to be metastatic--never tested. I had elevated CTC (circulating tumor cell test) but started probiotic therapy. Severe neck pain began to improve. Coincidental? I also had developed nodule in thyroid--results inconclusive. I was also found to have increased uptake in submandibular gland--was told it was a tumor. I had it removed. Results--contradictory. It was sent for tumor testing--privately--found to test positive for 7 different chemo combinations (Rational Therapeutics). Pathology report said it was benign. Rational Therapeutics informs you in 3 days if they don't have enough malignant cells to test. I was not informed--they had enough malignant cells. Pathology report said they received a "segment of the gland." The surgeon showed my husband the entire gland after it was removed and 'walked' it over to pathology himself as well as gave them the special kit to send to Rational Therapeutics. At my pre-op appt., when surgeon gave me reports that said gland was benign, I asked him why path. report said they only received a 'segment' of the gland when he had shown husband ENTIRE gland and gave it to pathology himself. The color drained from his face and he was almost speechless. He hemmed and hawed and finally said he "didn't know." Funny thing, about a month before I had found an article about our health provider--talked about how they manipulated test results--particularly those involving cancer...so who knows. About a month later I re-did CTC (circulating tumor cell test), results were now "0." 6 mos. earlier results had been a "4." Anything >2 is suppposedly significant. Meanwhile neck pain was now gone. Other unusual signs--blister-like rash across chest (non-malignant side)--appeared suddenly. Looked like shingles--but no pain. Dr. thought it looked like shingles. It was gone in a week. I had had weird bug-like bits (no itching that were not blister-like). I also had weird spreading rash on non-malignant side about 10 days after surgery--fit description of IBC rash. Surgeon removed small area and although reported results were 'benign', spreading process stopped. I later read that if large enough area not tested, one can get false negative results. I should also mention that for about 3 to 4 years before dx I had developed swollen legs--no cause ever found but am not sure if 'right' or enough tests had been done. I also was anemic for about 4 or 5 yrs before dx. 9 mos. before dx I found hardened area in chest (within days of last normal mammo) that I had shown my ob-gyn--he flippantly reminded me that mammo of few weeks before had been normal and made me feel stupied for even showing him. Then about 6 mos. later I began having weird bowel symptoms. I was told to tell my regular dr. I did 3 mos. later. He just ordered standard 'sample.' Then after bc dx--just before mastectomy began to have significant rectal bleeding. It continued off and on until after last AC. I did have colonoscopy 4 mos. later that was then normal. Again at time of dx of bc I also had many enlarged retroperitoneal nodes--rept said it was not likely associated with b.c. Was that from the lobular bc or did I have a 2nd cancer? It was never determined. I have strong family hx of cancer--many died young w/breast cancer (youngest died at age 28). (My mom had 4 first cousins died from bc at young ages and her sister was dx'd at age 45). She had 2 aunts who died from bc as well. I was dx'd at same age as mom--50. I had uncle (paternal) dx'd with colon cancer in his 30's. My paternal grandmother died in her 40's from bc and another uncle died from melanoma. Yet, I tested negative for all known genes at time of testing. I was dx'd 5.5+ yrs ago. My husband, former cancer researcher and 2nd opinion dr's, think I was stage IV at time of dx (although path report indicated stage IIb). As one 2nd opinion dr. mentioned, what was important was not necessarily 'stage' but treatment given. Then again, he indicated he would not necessarily have given me same treatment but didn't disagree w/it but then again would not tell us what he would have used--since treatment had already been started. So, how am I doing. I am still here. I am working. I have ups and downs and have become hyper-vigilant. I have tried to learn everything I can about b.c. I do additional treatments--off-use of medication based on research. I also try to eat alot of vegetables and exercise. I don't know if the treatment I have received has always been the best but can't argue too much since I am still around despite my initial pathology report which suggested otherwise. There are a few things that still need to be taken care of. Oh---and forgot to mention I have had lymphedema from the very start-woke up with pain in my elbow after surgery. I have no idea why my elbow would have hurt. I have seen an OT and PT's and received treatment since. The lymphedema has progressed despite on-going treatment and custom sleeves. It's a royal pain but do-able. Please excuse long message but wanted to give friend some encouragement and share what has worked for me. Take care and hope you/she are doing well.