Stephanie B.
09-12-2008, 12:12 PM
Hi
I don't post very often, but I read a lot. I have just recently been back on the boards - computer down and have been in and out of the hospital 3 times since last November due to mets.
Background
DX with IIIb Invasive Ductal Carcinoma - lumpectomy followed a week later by masectomy - 23 of29 lymph nodes involved. 4 weeks of A/C followed by 4 weeks of Taxol. Started Tamoxifen but stopped - not working. Started Herceptin. In Nov 2006 PET scan showed liver mets. Started back on Taxol. Finished Taxol and stayed on Herceptin. In May/June 2007 started having pain in my left groin area and low back. Finally in July/August my primary doctor sent me for xrays and CT scans - showed bulging discs and that my coccyx was offline. They sent me to a pain management doctor and we discussed putting in a pump, but that kind of scared me because he said if I happened to have a tumor there and he hit it I could bleed out! So I decided that the pain wasn't that bad and I would handle it with pills. In November I started getting worse until one day I couldn't walk. I ended up in the hospital for 4 weeks. Prior to this we were going to start me on Tykerb/Xeloda but put that on hold while in the hospital. They did MRIs and CT scans and discovered a tumor on my lumbar that was effecting my sciatia. I had radiation for 2 weeks and was able to start walking again. I was able to go home the week before Christmas. On New Years eve I was sitting down and couldn't get up again. I went to the emergency room and was admitted to the hospital again. This time I was there for almost 8 weeks. While there this time we started the Tykerb/Xeloda and also found another tumor on the sacrum and directly behind that on my spine. More radiation. I was released on Valentines Day. I wasn't completely done with radiation so I had to finish from home. They sent me home with Hospice/Home health to manage my pain and help me shower and adjust. I started feeling a lot better and was getting out and going places. We took the kids to Las Vegas in July and had a great time. When we got home my right shoulder started hurting and I thought I had just slept wrong. It got worse and worse until I couldn't move my arm. I must have been bad because my husband called an ambulance instead of taking me himself like he had before. Tests showed another tumor in the neck area and I was admitted to the hospital again. They were worried about fractures and made me wear a neck brace for 2 weeks. My onc decided to take me off of the Tykerb/Xeloda until after radiation. While in the hospital I had to have a pic line put in due to the fact that my port isn't working (first one quit working after 2 1/2 years and I had it replaced 2 times in 2 months and both malfunctioned!) I also had problems with my heart rate. While I was sleeping at night it would drop down into the 30s so I had to have a monitor on and they sent in a cardiologist and I had about 5 EKGS. They never did figure out why it was dropping and it got a little better. Now it is anywhere from 65-85. Anyway I went home after 2 weeks and finished radiation from home. My latest PET scan showed that the bones are much better - my rad onc is really impressed at how I respond to radiation. However, my liver is looking worse. I have been having a sharp pain on my right side under my ribs and my med onc said it is most likely the liver.
I am sorry about rambling - here is my question.
I am starting on Nevalbine on Monday. My onc wants me to get a pic line rather than replacing my port again. I was wondering what the side effects of the Nevalbine are. My nurse said we will need to watch the WBC and there would be nausea - but we will give anti-nausea meds. Will I lose my hair again? This would be the third time. I guess I will get a new wig if I do!
Thank you for your help. You are all so much more knowledgeable about all of this than I am.
Stephanie B.
I don't post very often, but I read a lot. I have just recently been back on the boards - computer down and have been in and out of the hospital 3 times since last November due to mets.
Background
DX with IIIb Invasive Ductal Carcinoma - lumpectomy followed a week later by masectomy - 23 of29 lymph nodes involved. 4 weeks of A/C followed by 4 weeks of Taxol. Started Tamoxifen but stopped - not working. Started Herceptin. In Nov 2006 PET scan showed liver mets. Started back on Taxol. Finished Taxol and stayed on Herceptin. In May/June 2007 started having pain in my left groin area and low back. Finally in July/August my primary doctor sent me for xrays and CT scans - showed bulging discs and that my coccyx was offline. They sent me to a pain management doctor and we discussed putting in a pump, but that kind of scared me because he said if I happened to have a tumor there and he hit it I could bleed out! So I decided that the pain wasn't that bad and I would handle it with pills. In November I started getting worse until one day I couldn't walk. I ended up in the hospital for 4 weeks. Prior to this we were going to start me on Tykerb/Xeloda but put that on hold while in the hospital. They did MRIs and CT scans and discovered a tumor on my lumbar that was effecting my sciatia. I had radiation for 2 weeks and was able to start walking again. I was able to go home the week before Christmas. On New Years eve I was sitting down and couldn't get up again. I went to the emergency room and was admitted to the hospital again. This time I was there for almost 8 weeks. While there this time we started the Tykerb/Xeloda and also found another tumor on the sacrum and directly behind that on my spine. More radiation. I was released on Valentines Day. I wasn't completely done with radiation so I had to finish from home. They sent me home with Hospice/Home health to manage my pain and help me shower and adjust. I started feeling a lot better and was getting out and going places. We took the kids to Las Vegas in July and had a great time. When we got home my right shoulder started hurting and I thought I had just slept wrong. It got worse and worse until I couldn't move my arm. I must have been bad because my husband called an ambulance instead of taking me himself like he had before. Tests showed another tumor in the neck area and I was admitted to the hospital again. They were worried about fractures and made me wear a neck brace for 2 weeks. My onc decided to take me off of the Tykerb/Xeloda until after radiation. While in the hospital I had to have a pic line put in due to the fact that my port isn't working (first one quit working after 2 1/2 years and I had it replaced 2 times in 2 months and both malfunctioned!) I also had problems with my heart rate. While I was sleeping at night it would drop down into the 30s so I had to have a monitor on and they sent in a cardiologist and I had about 5 EKGS. They never did figure out why it was dropping and it got a little better. Now it is anywhere from 65-85. Anyway I went home after 2 weeks and finished radiation from home. My latest PET scan showed that the bones are much better - my rad onc is really impressed at how I respond to radiation. However, my liver is looking worse. I have been having a sharp pain on my right side under my ribs and my med onc said it is most likely the liver.
I am sorry about rambling - here is my question.
I am starting on Nevalbine on Monday. My onc wants me to get a pic line rather than replacing my port again. I was wondering what the side effects of the Nevalbine are. My nurse said we will need to watch the WBC and there would be nausea - but we will give anti-nausea meds. Will I lose my hair again? This would be the third time. I guess I will get a new wig if I do!
Thank you for your help. You are all so much more knowledgeable about all of this than I am.
Stephanie B.