› Forums › General Melanoma Community › One less thing, please…
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ecc26.
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- July 18, 2016 at 5:23 pm
Been a pretty rough week… or so.
Had a pretty good week with family at a reunion from the 3rd to the 9th except for tripping and falling on the sidewalk on our way to a parade on the 4th and badly skinning my knee. Between that and some of the medications I’m on I had a harder time doing things like getting down to the water (steep stairs and supposed to stay out of the sun). Felt at times a bit like the grinch who didn’t want to do anything. My little sister and her fiancé got married on Thursday and we had a great reception Friday with LOTS of great food, family and neighbors. We also celebrated my parent’s anniversary (late, but that’s ok) with a special dinner out. Lots of good things happened that week.
Unfortunately, as the week went on, I started to notice a return of my back pain, despite the fact that I was walking and doing my physical therapy stretches/exercises. That didn’t help my grinchiness and I attributed it to the overly soft mattress we were sleeping on at the rental house. Between my skinned knee (hurt whenever anything touched it) and my back I was not sleeping very well and was pretty tired and grumpy by the time we left on Saturday morning. Made worse by the thought of a long car ride (not great for my back).
By the end of the week we had eaten so much and so much cured/salted meat (bacon, sausage, etc) that my feet and ankles were swollen, so after picking up our diabetic cat from a friend and doing some housework (good amount of NSAIDs on board for my back) and running a couple of errands (empty fridge) I settled down on the couch to elevate my swollen feet and apply some of the techniques I learned from the physical therapist for lymphedema in my arm to try and clear the fluid from my feet/ankles. Relaxed and watching TV I was interrupted by another focal motor seizure in my right arm. The last couple had been pretty mild and short lived, so other than being annoyed that they were still happening despite the anti-seizure meds and having the brain mets treated, I didn’t think much of it. I already had an appointment with my local oncologist coming up on Friday. Assuming no other problems, I would discuss it with him then.
Problem was, it wasn’t stopping- it would ease up and I would think it was about to stop, then increase in intensity and keep going. No idea how long it went on for, but I got scared and called for my husband (upstairs). He found me on the couch and called an ambulance (poor guy, can’t even imagine how he must have been feeling). Of course right after he hung up the phone it stopped, but I had no use of my right arm at all it was so fatigued. The ambulance arrived, but given that it was done we opted to just have my husband drive me down to the ER for evaluation. The EMTs took my blood pressure, My husband had to sign all the paperwork both for the ambulance and at the ER and we now have a $170 dollar bill for the EMTs blood pressure reading (which was a little high, but not abnormal). Just kidding, I know the fee is for responding to the call and would have been much higher had I taken the ride.
So, spent Sunday evening in the ER again, where they did a CT and lots of bloodwork. That showed that I had low potassium, magnesium, and that I was anemic (shocker-I've had anemia forever). They infused 2mg Mg, almost forgot to flush my port before de-accessing it, and gave me a couple of pills to take to get my potassium back to normal. The neurologist on call reported that low Mg levels can cause seizure activity, so who knows- maybe that was all it was. In the mean time, several hours on an ER bed did nothing good for my back, which felt like I had been set back all the way to when it started last fall.
Lots of NSADs later trying to get my back pain under control, and, surprise surprise, started having GI issues; you know, because steroids and NSAIDs go so well together. Typically a day or 2 of carefully timed NSAIDs and I don’t have any problems, but with the continued setbacks with my back pain the NSAID use was going on longer than expected. I had some narcotics I probably could have used, but given how loopy and nauseous they make me and how non-functional I become I tend to avoid them. It’s better for muscular problems to be able to get up and move around than to be stuck in a non-functional state- hence the preference for NSAIDs.Seemed like an outflow obstruction issue in my stomach where anything I ate or drank would sit in my stomach forever. Also, with the complete setback in my hand/arm I was frustrated by not having the dexterity to even cut my own meat- my husband had to do that for me like I was a child. As the week progressed I started having what seemed like gastritis/ulcer symptoms in addition (assumption NSAIDs and steroids together longer than normal).Appointment with local oncologist Friday afternoon where I discussed the changes and setbacks. No big surprise, he wanted me to stop the NSAIDs and go to narcotics only. After some arguing about being able to function and nausea associated with those, we compromised on narcotics at night when I’ll be sleeping anyway and tylenol or advil during the day to be functional, but only if needed for back pain. Looking at the bloodwork from the ER visit and considering the other symptoms I’d developed he also decided to hospitalize me and do a blood transfusion and a chest/abdomen/pelvis CT. Can’t say I was excited about any of that and was pretty grumpy between the side effects of the meds I was already on, lack of sleep from the back and stomach pain and having to spend an unexpected night in a hospital bed, which I knew would not help my back. My poor husband had to go home and get me pj’s and I had him stop and get sandwiches for after the CT. I really do feel bad for all that I put him through.Checked in to the hospital, they accessed my port, but then tried to put in a peripheral catheter for the CT- which I refused to let them do (that’s why I have a port). Drew blood, started the blood transfusion as I started drinking the GI contrast, and started going over a questionnaire and possible side effects from the transfusion. The nurse wanted a complete history of my surgeries, etc (all in my file, should have been able to look that up) with the end result being that they came to get me for CT before any of that was done. Nurse said we’d finish everything when I came back, but when I came back nothing else happened and there was no paperwork about the blood transfusion left in the room for me to look at. Shift change was happening and I was more interested in whether or not I was allowed to eat, so by the time I thought about it there wasn’t much to do as the transfusion was continuing.They gave me some injection for the stomach pain, which was great and allowed me to eat the sandwich. My husband had to go home around 9 to deal with our diabetic cat, and after that the overnight nurse gave me an injectable anti-nausea followed by a narcotic, which hit before he was done injecting it. It certainly does relieve pain, but boy was I dizzy. Thank goodness for anti-nausea meds. I just basically went to sleep.Hospitals are not known for being restful places and between the frequent vital signs checks for the transfusion (the 2 units didn’t end until after midnight) and the regular vitals checks every few hours, I got very little sleep. Local oncologist came in Sat morning, said the scan did not show any evidence of an outflow obstruction and no bleeding ulcer, but something about a segment of intestine that was doubled back on itself (still not quite sure what this means) that was probably causing some of the gastric issues. He indicated that the GI contrast often resolves that. It hasn’t as far as I can tell.I was discharged with a script for a muscle relaxant, the narcotic I had gotten at the hospital and the anti-nausea medication. Of those 3, which do you think the insurance had a problem with and I couldn’t get filled? That’s right, the anti-nausea medication. In addition, pretty much all the medications I’m now on (except the steroid) cause dizziness and/or drowsiness. Great.Along with the Ipi/PD-1 infusion (second infusion happening as I type) getting IV Fe instead, and after a conversation with my oncologist this morning before the infusion started, the Dexamethasone will be cut back to 1mg once a day instead of twice, so hopefully that will help my stomach.In general, if I didn’t have the back pain that keeps getting exacerbated then I probably wouldn’t have the stomach issues. My knee at least is healing well. but I really could do with at least one less problem and a few less pills in my life. I’m tired and frustrated with everything and haven’t had a moment to explore what might come next if this doesn’t work. I’m also overly emotional from… who knows what- lack of sleep, stress, frustration, medications, all of it… and who knows what side effects I’ll get from this second infusion of 2 drugs I’ve already failed. Can’t wait. Hopefully I’ll get the back pain settled, the follow up MRI in a few weeks will look good and I can get off some of these pills. Right now that may be the best I can hope for.If you’ve read all the way through this, you’re probably feeling drowsy yourself. I apologize for that.-Eva
- Replies
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- July 18, 2016 at 7:19 pm
Hi Eva,
There's nothing like a dual agent infusion to create idle time. 90 minutes for the Yervoy and another 60 for the Opdivo, and you have a nice chance to vent your frustrations. Don't worry, we get it. In fact venting here beats complaining to your loved one's who will only be more scared than they already are. This is a safe zone.
I can't add much except that most of us are dealing with some kind of pain and frustration, always asking ourselves how we ended up here. I consider myself the healthiest sick person I know. I have for the most part dodged the serious side-effects of my various treatments, with the exception of early treatment on Zelboraf. I too have a serious degenerative spine condition, which is clearly shown on my CT's. Ironically I was on steroids at one phase in my treatment, very low-dose 10mg prednisone and it was like a miracle how it improved my back pain which was more debilitating than the cancer. Incredibly, now about 2-years later, my back pain still is mostly gone. So it goes, we all have our battles, and most of us bear them in silence. I have found it therapeutic focusing on others, here at this forum and it takes my mind off my own problems. Hang in there!
Gary
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- July 18, 2016 at 7:19 pm
Hi Eva,
There's nothing like a dual agent infusion to create idle time. 90 minutes for the Yervoy and another 60 for the Opdivo, and you have a nice chance to vent your frustrations. Don't worry, we get it. In fact venting here beats complaining to your loved one's who will only be more scared than they already are. This is a safe zone.
I can't add much except that most of us are dealing with some kind of pain and frustration, always asking ourselves how we ended up here. I consider myself the healthiest sick person I know. I have for the most part dodged the serious side-effects of my various treatments, with the exception of early treatment on Zelboraf. I too have a serious degenerative spine condition, which is clearly shown on my CT's. Ironically I was on steroids at one phase in my treatment, very low-dose 10mg prednisone and it was like a miracle how it improved my back pain which was more debilitating than the cancer. Incredibly, now about 2-years later, my back pain still is mostly gone. So it goes, we all have our battles, and most of us bear them in silence. I have found it therapeutic focusing on others, here at this forum and it takes my mind off my own problems. Hang in there!
Gary
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- July 18, 2016 at 7:19 pm
Hi Eva,
There's nothing like a dual agent infusion to create idle time. 90 minutes for the Yervoy and another 60 for the Opdivo, and you have a nice chance to vent your frustrations. Don't worry, we get it. In fact venting here beats complaining to your loved one's who will only be more scared than they already are. This is a safe zone.
I can't add much except that most of us are dealing with some kind of pain and frustration, always asking ourselves how we ended up here. I consider myself the healthiest sick person I know. I have for the most part dodged the serious side-effects of my various treatments, with the exception of early treatment on Zelboraf. I too have a serious degenerative spine condition, which is clearly shown on my CT's. Ironically I was on steroids at one phase in my treatment, very low-dose 10mg prednisone and it was like a miracle how it improved my back pain which was more debilitating than the cancer. Incredibly, now about 2-years later, my back pain still is mostly gone. So it goes, we all have our battles, and most of us bear them in silence. I have found it therapeutic focusing on others, here at this forum and it takes my mind off my own problems. Hang in there!
Gary
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- July 18, 2016 at 8:43 pm
Oh Eva!! What a series of events!! I'm sorry for all you have had to endure. I'm so sick & tired of all of this for everybody. It pains me for all the suffering…physical and mental. I read the whole post and I'm praying the next couple of weeks are the best ones yet
best!!
Josh
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- July 18, 2016 at 8:43 pm
Oh Eva!! What a series of events!! I'm sorry for all you have had to endure. I'm so sick & tired of all of this for everybody. It pains me for all the suffering…physical and mental. I read the whole post and I'm praying the next couple of weeks are the best ones yet
best!!
Josh
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- July 18, 2016 at 8:43 pm
Oh Eva!! What a series of events!! I'm sorry for all you have had to endure. I'm so sick & tired of all of this for everybody. It pains me for all the suffering…physical and mental. I read the whole post and I'm praying the next couple of weeks are the best ones yet
best!!
Josh
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- July 19, 2016 at 2:43 am
Wow what a week Eva…hope things go better for you. I just had my own battle of brain mets and massive side effects from braf drugs. It’s so mentally and physically exhausting. I and know what you mean about getting sick of the pills and such but we all hang in there and battle because it’s a fight none of us are willing to lose…so keep pushing ahead it’s the only way we know! -
- July 19, 2016 at 2:43 am
Wow what a week Eva…hope things go better for you. I just had my own battle of brain mets and massive side effects from braf drugs. It’s so mentally and physically exhausting. I and know what you mean about getting sick of the pills and such but we all hang in there and battle because it’s a fight none of us are willing to lose…so keep pushing ahead it’s the only way we know! -
- July 19, 2016 at 2:43 am
Wow what a week Eva…hope things go better for you. I just had my own battle of brain mets and massive side effects from braf drugs. It’s so mentally and physically exhausting. I and know what you mean about getting sick of the pills and such but we all hang in there and battle because it’s a fight none of us are willing to lose…so keep pushing ahead it’s the only way we know! -
- July 19, 2016 at 7:21 pm
Thank you all for your thoughts and support. I'm doing no better so far and to make matters worse I can't seem to eat anything without a lot of gastric pain, so I'm basically not eating anything at all, though fluids seem ok so long as I go slow. Basically only water though, as soon as I try to introduce any nutrition (i.e. Boost, ensure, etc) I get the pain again, so I'm staying hydrated for now, but have a call in to my oncolgist because I can't have no nutriton.
-Eva
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- July 19, 2016 at 7:21 pm
Thank you all for your thoughts and support. I'm doing no better so far and to make matters worse I can't seem to eat anything without a lot of gastric pain, so I'm basically not eating anything at all, though fluids seem ok so long as I go slow. Basically only water though, as soon as I try to introduce any nutrition (i.e. Boost, ensure, etc) I get the pain again, so I'm staying hydrated for now, but have a call in to my oncolgist because I can't have no nutriton.
-Eva
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- July 19, 2016 at 7:21 pm
Thank you all for your thoughts and support. I'm doing no better so far and to make matters worse I can't seem to eat anything without a lot of gastric pain, so I'm basically not eating anything at all, though fluids seem ok so long as I go slow. Basically only water though, as soon as I try to introduce any nutrition (i.e. Boost, ensure, etc) I get the pain again, so I'm staying hydrated for now, but have a call in to my oncolgist because I can't have no nutriton.
-Eva
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