On Thursday I had my first Nivolumab infusion. Turns out that they don't normally premed with this drug for their patients with other cancers. With an afternoon appointment, we hit traffic going in, so we were running late, and I got a late start. It's a one hour infusion, and I have it through a peripheral IV (as I feel like right now I don't need a bigger line for a short infusion with no pain). The infusion went smoothly, and seemed to be worry free.
We got out of the hospital at about 4:45, just in time to hit rush hour traffic on the one highway that leaves Gloucester to go toward home. We got stuck in traffic, and then it hit. Excruciating pelvis and hip and lower back pain that had me screaming, cursing and writhing in pain. It took a little over an hour to get home (should take about 25 mins). I went up to bed and took two pills - an Alieve and an Ativan. I was starting to get nauseous, and I was starting to panic about the pain. I tried a bunch of positions, a heating pad, and relaxation techniques. The pain wouldn't stop, it was getting worse. I was having a full blown panic attack at this point. I started shaking uncontrollably and I was hyperventilating. I told Mike to call 911 - I needed help with the pain, and oxygen immediately.
The paramedics put me on O2 asap as my fingers and lips were already blue. My pulse ox was in the low 80s. As soon as the oxygen flowed the shaking started to calm down. By the time we got to the hospital the shaking was done, but the pain was still a 10, which for me is insane - remember I did a c-section and only took ibuprofen (and less than they said) after, and did an unmedicated 23 hours of labor VBAC with no trouble. There have been two times I have asked for strong pain meds - my second set of kidney stones (it was 6mm, the 4mm one I passed with only taking Alieve), and bone pain from Nupogen injections with my first rounds of chemo in 2011. They put me in a room asap, and I asked the nurse for oxygen so that I could keep the panic attack at bay. She was happy to do so. I continued to cry and ask for help while waiting for the doctor. I felt horrible for the nurse, as she couldn't do anything without a doctor's order, and the ER was extremely busy. She put me as high on the list as she could (there had been people waiting for over 3 hours to be seen already) and I waited about an hour and a half for my meds. The nurse practically ran into the room with the IV morphine when she got the OK. Thank goodness for IV meds and how fast they work - while she was still pushing the dose I felt things start to relax and release. The doctor was trying to ask me questions and I had to take a second to get my head back. From 10 I went to a 3 or 4 very quickly and I finally laid back and could just be in one position. The pain started creeping back up to a 5/6 over the next hour or so, so we decided I would stay for observation overnight, take a Percocet to see if that would be enough to control it now that we were getting ahead of the pain, and they ordered a few extra tests. I apologized to all the nurses and the doctors for being so upset when I got in. They have a hard job, and I always hate to be a bad patient.
Because I just needed to be observed and pain meds if the pain came back, they put me on the observation floor. I got up there just before midnight (after dozing a few times in the ER - thank you narcotics!), and the nurse was amazing. So sweet. Here is the greatest part - I was in a bed that had an alternating pressure air pump! The nurse said that some people don't like it because of the sound it makes (I'm used to sleeping with noise, so no biggie for me), but I found it to be the most amazing experience ever! For the first time in I don't know how long I slept for hours without needing to move and without having any pain. I even woke up pain free! I figured that it was thousands of dollars to get a mattress like that, but turns out I can get a topper with the pump for $100-300 from Walmart of all places. Going to be getting one asap - sleep is my restorative time.
When I got home, I found a great gift from a friend - a book that I had pinned on Pinterest called "How to be Sick" by Toni Bernhard. I have already finished it. It's a look at how buddhism and it's teachings can help chronically ill people and their caregivers live less stressfully with the changes in their life. It's an amazing book and I highly recommend it to anyone who is going through an illness, taking care of someone with an illness, or the family and friends of someone with an illness. I have already implemented one or two of the things, and I'm looking forward to expanding my practice. I can't remember the last time I read a whole book, and I don't think I've EVER finished a book in a few days (thank's dyslexia). It is truly amazing that this woman - who has way more daily struggles than I do - was able to share her story and her Buddhist coping mechanisms to help all those who read her book get through with grace and peace. I will have to send her a thank you.
I'm already feeling that this drug is having positive effects (even with all the pain it caused). I already have noticed I'm able to eat more in a sitting (showing signs that my spleen is shrinking), and I can feel twinges of things happening in my neck and armpit, and the swelling is down there as well. Even the swelling in my hip and lower abdomen is less already. I'm not counting on a miracle yet, but at least things seem to be moving in the right direction, and that (thankful to my latest read) is something to be joyful about.
Sunday, November 20, 2016
Wednesday, November 16, 2016
Long Overdue...
It's been a long time since I posted. I've kind of been in a depressed funk. With the weather getting colder, and not being as comfortable for outside sitting, I've spent a lot of time in my room binge watching Netflix and project runway. Not exactly my highest point.
The update is that as of October, the Brentuximab was no longer shrinking my cancer. It had done a great job getting rid of a bulk of my disease, but the places it didn't touch have started to get angry again. I have a couple of small new spots on both my lungs and my liver and the mass in my abdomen and nodes in my hip have started to get a little bigger. This threw me for a loop as I was hoping that I would be done after 6 rounds, but it seems like I'm back in the hot seat of deciding on new treatment .... Again!
It's overwhelming to have to do this over and over again. I went to Dana Farber and met again (a year and a half later) with dr Armand. This meeting didn't go as well as I hoped, but not because of the things he was telling me, but rather his tone and some choice words he used. While I was frustrated with the way the appointment went, I did get most of the information I needed to make a decision on my next step in treatment. SO here goes...
My next drug of choice is Nivolumab - a PD-1 checkpoint inhibitor that in the spring was still on trials, but is now FDA approved and available for hodgkin's patients. This drug has shown great promise in getting people into remission - and many have had durable remissions. It has not been used in hodgkin's long enough to have official "cure" data, but it is a great next step for me.
This drug also will not (likely) effect my chances at having a successful stem cell transplant in the future should I need one. As it is not a chemotherapy, it doesn't create the chemo resistance that can happen when you try chemo after chemo after chemo and keep changing those types of drugs (this is why I chose this over combining Brentuximab with Brendamustine - which is another good combo, but would be a treatment that could potentially reduce my likelyhood of getting cure from an auto transplant).
A few things that come in the future - as far as this drug goes, I'm hoping to get a complete response (CR). I am willing to stay on it for some number of doses if that response is reached. As maintinence therapy I plan on doing a few things - making sure my diet is more low carb, Tong Ren therapy with accupuncture, much more regular chiropractic care (someone remind me I need to make an appointment!), Cannabis oil in low doses, regular detox, yoga, rebounding, and mindfulness work (massage, meditation, etc). The biggest factor that will (my doctors and I believe) help to keep me in remission is that I have taken future pregnancies off the table. My original diagnosis and my relapse were both linked to my pregnancies, and there is some science that says it could be linked. Taking that off the table will hopefully keep me trigger free for relapse in the future. (Pregnancy is linked to hodgkin's with the PD-1 checkpoint - a hormone (I think it's a hormone) that is also excreted by the unborn fetus to keep safe from the mother's immune system.)
While I know that cancer is a metabolic disease, and not a true immune disorder, the immune system plays a vital role in helping the body clear widespread disease. This is my hope for Nivolumab for me - to clear my of my widespread disease, while I work to restore my metabolism. (If anyone wants to come over and put my rebounding trampoline together, I wouldn't object 😀.
Timeline: Because of the holidays, and trying to avoid the chaotic schedule that will happen at the hospital next week, I am starting Nivolumab TOMORROW (Thursday) afternoon. Since my last dose of anything was in the middle of October, I'm feeling good about getting going on the next step. My oncologist and my clinic nurses are very familiar with this drug, as it has been approved for other cancers for years, and have had hundreds of patients on this before, so it will be an easier first day (at least for them) than my first day of Brent. I'm glad I get to see my nurses tomorrow and I'm keeping my fingers crossed for minimal side effects and fast acting cancer killing!
Big question: how am I feeling? I feel pretty good - for sure better than I felt in July when I started the Brent. The only thing that is really bothering me is my hip and lower back. There is a node in my hip that pushes against an old hip flexor injury that is all scar tissue, so any little irritation causes pain. I am managing with just Tylenol and the occasional alieve, which is good. I hate taking pain meds, but right now I need to be able to at least sleep and function semi normally during the day.
With this new drug, we are not sure what my needs will be. We should know more over the next few days. If anyone wants to bring meals, I can reopen the meal train dates. That is always a huge help for us. If anyone wants to start taking L on Thursday mornings for us, that would be helpful as well. Lastly, for those who have supported us already, thank you so much. We greatly appreciate it. If you are able to donate, or know someone who may be able to donate, please share and click the button in the upper right of this blog. Unfortunately we are still not out of the woods financially (although we have had some amazing help from some amazing donors and organizations - THANK YOU!), and every dollar helps.
Best to all those in this fight with me - I know it has been a long and hard road. Hopefully it can be less chaotic soon.
The update is that as of October, the Brentuximab was no longer shrinking my cancer. It had done a great job getting rid of a bulk of my disease, but the places it didn't touch have started to get angry again. I have a couple of small new spots on both my lungs and my liver and the mass in my abdomen and nodes in my hip have started to get a little bigger. This threw me for a loop as I was hoping that I would be done after 6 rounds, but it seems like I'm back in the hot seat of deciding on new treatment .... Again!
It's overwhelming to have to do this over and over again. I went to Dana Farber and met again (a year and a half later) with dr Armand. This meeting didn't go as well as I hoped, but not because of the things he was telling me, but rather his tone and some choice words he used. While I was frustrated with the way the appointment went, I did get most of the information I needed to make a decision on my next step in treatment. SO here goes...
My next drug of choice is Nivolumab - a PD-1 checkpoint inhibitor that in the spring was still on trials, but is now FDA approved and available for hodgkin's patients. This drug has shown great promise in getting people into remission - and many have had durable remissions. It has not been used in hodgkin's long enough to have official "cure" data, but it is a great next step for me.
This drug also will not (likely) effect my chances at having a successful stem cell transplant in the future should I need one. As it is not a chemotherapy, it doesn't create the chemo resistance that can happen when you try chemo after chemo after chemo and keep changing those types of drugs (this is why I chose this over combining Brentuximab with Brendamustine - which is another good combo, but would be a treatment that could potentially reduce my likelyhood of getting cure from an auto transplant).
A few things that come in the future - as far as this drug goes, I'm hoping to get a complete response (CR). I am willing to stay on it for some number of doses if that response is reached. As maintinence therapy I plan on doing a few things - making sure my diet is more low carb, Tong Ren therapy with accupuncture, much more regular chiropractic care (someone remind me I need to make an appointment!), Cannabis oil in low doses, regular detox, yoga, rebounding, and mindfulness work (massage, meditation, etc). The biggest factor that will (my doctors and I believe) help to keep me in remission is that I have taken future pregnancies off the table. My original diagnosis and my relapse were both linked to my pregnancies, and there is some science that says it could be linked. Taking that off the table will hopefully keep me trigger free for relapse in the future. (Pregnancy is linked to hodgkin's with the PD-1 checkpoint - a hormone (I think it's a hormone) that is also excreted by the unborn fetus to keep safe from the mother's immune system.)
While I know that cancer is a metabolic disease, and not a true immune disorder, the immune system plays a vital role in helping the body clear widespread disease. This is my hope for Nivolumab for me - to clear my of my widespread disease, while I work to restore my metabolism. (If anyone wants to come over and put my rebounding trampoline together, I wouldn't object 😀.
Timeline: Because of the holidays, and trying to avoid the chaotic schedule that will happen at the hospital next week, I am starting Nivolumab TOMORROW (Thursday) afternoon. Since my last dose of anything was in the middle of October, I'm feeling good about getting going on the next step. My oncologist and my clinic nurses are very familiar with this drug, as it has been approved for other cancers for years, and have had hundreds of patients on this before, so it will be an easier first day (at least for them) than my first day of Brent. I'm glad I get to see my nurses tomorrow and I'm keeping my fingers crossed for minimal side effects and fast acting cancer killing!
Big question: how am I feeling? I feel pretty good - for sure better than I felt in July when I started the Brent. The only thing that is really bothering me is my hip and lower back. There is a node in my hip that pushes against an old hip flexor injury that is all scar tissue, so any little irritation causes pain. I am managing with just Tylenol and the occasional alieve, which is good. I hate taking pain meds, but right now I need to be able to at least sleep and function semi normally during the day.
With this new drug, we are not sure what my needs will be. We should know more over the next few days. If anyone wants to bring meals, I can reopen the meal train dates. That is always a huge help for us. If anyone wants to start taking L on Thursday mornings for us, that would be helpful as well. Lastly, for those who have supported us already, thank you so much. We greatly appreciate it. If you are able to donate, or know someone who may be able to donate, please share and click the button in the upper right of this blog. Unfortunately we are still not out of the woods financially (although we have had some amazing help from some amazing donors and organizations - THANK YOU!), and every dollar helps.
Best to all those in this fight with me - I know it has been a long and hard road. Hopefully it can be less chaotic soon.
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