Sunday, September 25, 2016
Some Happy News to share....
Thursday, September 15, 2016
Long overdue update....
It's been ages since I have posted here, mostly because I have spent a lot of time feeling like crap and have not really had much news to share, after being off of Opdivo for several weeks. We had all hoped the treatment break would help me feel better and also allow the Pneumonitis to clear.
I was finally cleared to re-start my treatment in August. I had my first infusion on the 17th and a second one of the 31st and both went fine. I was scheduled for one more than then was going to have my next CT Scan to see how it was working and to make sure there was no signs of the Pneumonitis.
Thankfully, I felt pretty good during that "off" week, which was wonderful especially since my son, Brian, was home for a short visit. It was awesome to be with him, but the time flew by and he headed back to San Diego on the 29th. Ironically, he woke up that morning and had a lot of pain in his knee and actually took the time to go to the drugstore and buy a support to wear for the long flight home. He also bought some Ibuprofen and started taking it that morning, thinking he had slept wrong or something? The next morning, (back in San Diego) he woke up in intense pain and had a huge amount of swelling and could barely walk or move around. He managed to hobble to a "work" meeting and then headed directly to Urgent Care, where he went spent the afternoon having all kinds of tests. Later in the day, they told him he need to go to the ER, because he needed more care, than they can do there and had set him up to be seen by an Ortho Doc as well as an Internal Med doc so they could drain some of the fluid off his knee.
Long story short, he had that done (quite a painful procedure), which unfortunately did not give him any relief. They then put him on IV Pain meds and he started running a fever and his white counts were elevated, so he ended up having to be admitted to the hospital that night. His admitting diagnosis was a question of "Septic Arthritis". He was in severe pain and even after draining 50 cc of fluid, he was not improving. He spent the next two days there and in the end, they determined he had a very rare form of Arthritis that was actually caused by Salmonella. He had had a case of what he thought was "food poisoning" about two weeks before he was was here. The Salmonella showed up in this lab work and they put it all together. Some how the 'bacteria' from the Salmonella settles into joints (often knees) and causes this sudden onset of acute pain and inflammation. It's also most common in males under 40, but is very rare, typically under 20,000 cases per year. Luckily, one of his docs had see it once before (about five years prior) and he was the one who figured it out. Otherwise, God knows how many more tests he may have needed to determine what this was. He was treated with IV Antibiotics and Anti-Inflammatory meds and eventually discharged and has since had a follow up with his PCP. I was super stressed and found it very difficult to my have my son in the hospital 3,000+ mile away. Plus, Brian has never really been sick much in his entire life (he's now 29). Even as a child he never missed school and rarely even had a cold.
That was a very difficult week for me, as it's very hard on any Mom to have their child (no matter what age) be so far from home and be sick so suddenly. Plus, I am not well enough to travel, so there was no way I could fly out to be there with him and I felt awful about that. Thankfully, he kept in touch several times each day and I also received updates from his medical team. I'm so grateful that he is now on the mend but it's going to take a long time for his knee to be back to normal and to be out of pain. And, the timing is terrible, since he is also in the process moving and changing jobs all on top of being in pain! Argh!! Hectic and stress for all!!
On top of that, I also ended up in the ER on the Friday night of Labor Day Weekend with intense belly pain and a fever (just two days after my Infusion) and any time you develop a fever over 100.5, after treatment, you need to call your Gynecologist, which is what I did and she sent me to the ER. We spent six hours there and had a tons of labs, a chest x-ray and a CT of my Lung and Abdomen which showed I have Pneumonia in my left lung...UGH! I was discharged that night as the initial reports looked good, but the day day, the ER doc who had treated me called to tell me the the second reading of my scans, clearly showed the Pneumonia. She then contacted my Oncologist and by then my fever was gone. I was exhausted, but otherwise okay. I also had/have a type of "Walking Pneumonia" and although she did call me in a RX for antibiotics, she told me not to take them unless the fever comes back for any symptoms, luckily that has not happened. I have no cough, pain or shortness of breath, just the same old fatigue and nausea and of course the bouts of belly pain, that we still don't really understand. My belly CT scan was fine and there was NO new cancer!! I'll be seeing Dr. Sunkara on the 21st, but we know that I need to again stop the Opdivo, as it is the cause of this and now it's more likely I will not be able to go back on it. So back the the drawing board for a new game plan? Hoping for the best and still taking One Day at a Time!
I was finally cleared to re-start my treatment in August. I had my first infusion on the 17th and a second one of the 31st and both went fine. I was scheduled for one more than then was going to have my next CT Scan to see how it was working and to make sure there was no signs of the Pneumonitis.
Thankfully, I felt pretty good during that "off" week, which was wonderful especially since my son, Brian, was home for a short visit. It was awesome to be with him, but the time flew by and he headed back to San Diego on the 29th. Ironically, he woke up that morning and had a lot of pain in his knee and actually took the time to go to the drugstore and buy a support to wear for the long flight home. He also bought some Ibuprofen and started taking it that morning, thinking he had slept wrong or something? The next morning, (back in San Diego) he woke up in intense pain and had a huge amount of swelling and could barely walk or move around. He managed to hobble to a "work" meeting and then headed directly to Urgent Care, where he went spent the afternoon having all kinds of tests. Later in the day, they told him he need to go to the ER, because he needed more care, than they can do there and had set him up to be seen by an Ortho Doc as well as an Internal Med doc so they could drain some of the fluid off his knee.
Long story short, he had that done (quite a painful procedure), which unfortunately did not give him any relief. They then put him on IV Pain meds and he started running a fever and his white counts were elevated, so he ended up having to be admitted to the hospital that night. His admitting diagnosis was a question of "Septic Arthritis". He was in severe pain and even after draining 50 cc of fluid, he was not improving. He spent the next two days there and in the end, they determined he had a very rare form of Arthritis that was actually caused by Salmonella. He had had a case of what he thought was "food poisoning" about two weeks before he was was here. The Salmonella showed up in this lab work and they put it all together. Some how the 'bacteria' from the Salmonella settles into joints (often knees) and causes this sudden onset of acute pain and inflammation. It's also most common in males under 40, but is very rare, typically under 20,000 cases per year. Luckily, one of his docs had see it once before (about five years prior) and he was the one who figured it out. Otherwise, God knows how many more tests he may have needed to determine what this was. He was treated with IV Antibiotics and Anti-Inflammatory meds and eventually discharged and has since had a follow up with his PCP. I was super stressed and found it very difficult to my have my son in the hospital 3,000+ mile away. Plus, Brian has never really been sick much in his entire life (he's now 29). Even as a child he never missed school and rarely even had a cold.
That was a very difficult week for me, as it's very hard on any Mom to have their child (no matter what age) be so far from home and be sick so suddenly. Plus, I am not well enough to travel, so there was no way I could fly out to be there with him and I felt awful about that. Thankfully, he kept in touch several times each day and I also received updates from his medical team. I'm so grateful that he is now on the mend but it's going to take a long time for his knee to be back to normal and to be out of pain. And, the timing is terrible, since he is also in the process moving and changing jobs all on top of being in pain! Argh!! Hectic and stress for all!!
On top of that, I also ended up in the ER on the Friday night of Labor Day Weekend with intense belly pain and a fever (just two days after my Infusion) and any time you develop a fever over 100.5, after treatment, you need to call your Gynecologist, which is what I did and she sent me to the ER. We spent six hours there and had a tons of labs, a chest x-ray and a CT of my Lung and Abdomen which showed I have Pneumonia in my left lung...UGH! I was discharged that night as the initial reports looked good, but the day day, the ER doc who had treated me called to tell me the the second reading of my scans, clearly showed the Pneumonia. She then contacted my Oncologist and by then my fever was gone. I was exhausted, but otherwise okay. I also had/have a type of "Walking Pneumonia" and although she did call me in a RX for antibiotics, she told me not to take them unless the fever comes back for any symptoms, luckily that has not happened. I have no cough, pain or shortness of breath, just the same old fatigue and nausea and of course the bouts of belly pain, that we still don't really understand. My belly CT scan was fine and there was NO new cancer!! I'll be seeing Dr. Sunkara on the 21st, but we know that I need to again stop the Opdivo, as it is the cause of this and now it's more likely I will not be able to go back on it. So back the the drawing board for a new game plan? Hoping for the best and still taking One Day at a Time!
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