After getting my port accessed and blood drawn, I headed up to the infusion room.
When the medical assistant took my weight, it was the highest since I started treatment. I'm almost 10 pounds more than my pre-chemo weight. This is pretty depressing. It's not exactly unexpected, since weight gain is a side effect on Lupron and a symptom of menopause. My old medical oncologist had advised me to not worry about losing weight while on chemo, so I really hadn't been thinking about it. But I'm not happy with the weight gain, so maybe it's time to pay attention.
I was in a bay by 9:30, but waited until almost 10:00 for my infusion nurse. I told her all about the recent developments with the symptoms in my hands. She said she could tell that my left hand is still a bit swollen, which probably explains why my left hand feels worse than my right. She said fluid retention could very well be a side effect from the Lupron. I guess that means I might not be able to get rid of it, though sometimes medication side effects subside after a while, so who knows.
She also said the symptoms might be a delayed reaction from chemo, as my physical therapist suggested last week. She said she wouldn't rule it out, especially since she's seen some unexpected reactions to chemo from Asian patients specifically. I remembered that my old medical oncologist had said the same early on, that clinical studies generally enroll mostly white patients, and Asian patients tend to react differently. My nurse said that in her experience, Asians are more sensitive to the drugs, and their side effects can be unpredictable compared to what might be expected.
Brainstorming ideas, she brought up compression sleeves and kinesio taping, which my physical therapist has also mentioned. I figured it's good to know these options exist, but since I just started with the wrist braces and radial nerve glides, I don't need to try anything new just yet.
Even after talking for a while, I still had to wait for the pharmacy to send up the Herceptin. My infusion started around 10:30.
I left the Cancer Center just after 11:00, which means today's visit took about 2 hours. I'd been wondering if my infusion appointments might be more efficient now that I'm only getting one drug, but I guess there's still a lot of waiting around time.
Friday, February 28, 2020
Thursday, February 27, 2020
2/27/20: I Wore Wrist Braces to Sleep and Added a Nerve Glide Exercise
In one of the Facebook support groups, someone posted a question about chemo-induced peripheral neuropathy. In the thread, there was a comment from someone whose symptoms and medication history sounded very similar to mine. Like me, she couldn't figure out the cause. Honestly, it was a relief just to know someone else was going through something similar. Anyway, she said her PCP suggested a wrist brace, thinking it might be carpal tunnel syndrome.
I suddenly remembered that my medical oncologist had made the same suggestion when I first reported my symptoms. At the time, the problem pointed more towards generic swelling and pinched nerves, so I basically forgot about the wrist brace idea. But now that the swelling is down, and I'm still getting symptoms, I figured the wrist brace was worth trying out. If it works, great! If it doesn't, maybe I can rule out carpal tunnel syndrome.
I ordered 2 ComfyBrace wrist braces and have slept with them every night since Sunday.
Before the braces, I was waking up in the middle of the night with numb and tingly hands. Usually I can make my hands feel better just by rolling onto my side, a trick I figured out after I realized that lying on my back triggered symptoms. With the wrist braces, I don't think my hands feel quite so numb and tingly at night. It's a little hard to tell in the braces, but I think it's an improvement.
I still wake up in the mornings with the "tightness" in my fingers. But I think it's not as bad, and it's wearing off more quickly than before.
Over the last few days, my pinky and ring fingers have actually felt pretty normal, and it's mostly just my thumb, pointer, and middle fingers that feel numb. It's no longer limited to just the fingertips, though. I've been doing my nerve glides, but now that the numbness seems centered around my thumbs and first two fingers, maybe I should be exercising my radial nerve? The nerve glides my physical therapist gave me target the median and ulnar nerves, and since I won't be seeing my physical therapist for a while, I looked up some videos for radial nerve glides to add to my regimen.
I still get occasional mild tingling in both hands, especially when using them, but overall, after the morning "tightness" wears off, my right hand feels a lot better, almost normal. Symptoms in my left hand are worse, but both hands are definitely loads better than before.
Before the braces, I was waking up in the middle of the night with numb and tingly hands. Usually I can make my hands feel better just by rolling onto my side, a trick I figured out after I realized that lying on my back triggered symptoms. With the wrist braces, I don't think my hands feel quite so numb and tingly at night. It's a little hard to tell in the braces, but I think it's an improvement.
I still wake up in the mornings with the "tightness" in my fingers. But I think it's not as bad, and it's wearing off more quickly than before.
Over the last few days, my pinky and ring fingers have actually felt pretty normal, and it's mostly just my thumb, pointer, and middle fingers that feel numb. It's no longer limited to just the fingertips, though. I've been doing my nerve glides, but now that the numbness seems centered around my thumbs and first two fingers, maybe I should be exercising my radial nerve? The nerve glides my physical therapist gave me target the median and ulnar nerves, and since I won't be seeing my physical therapist for a while, I looked up some videos for radial nerve glides to add to my regimen.
I still get occasional mild tingling in both hands, especially when using them, but overall, after the morning "tightness" wears off, my right hand feels a lot better, almost normal. Symptoms in my left hand are worse, but both hands are definitely loads better than before.
Friday, February 21, 2020
2/21/20: Lupron + (6 Months Post-DMX) Physical Therapy Appointment #19
I took another dose of Lasix and potassium yesterday. I think these last 2 doses did reduce the swelling in my left hand, but it's still not entirely gone. It's like a residual puffiness that just won't go away.
I don't think I'll take Lasix again unless my symptoms relapse. Right now, it's just a little swelling in my left hand. I still wake up with "tightness" in my fingers (my joints feel tight when making a fist), plus mild numbness and tingling in both hands. The bulk of it goes away after getting up and moving around, and everything improves during the day, but a mild tingliness persists, and just my fingertips feel numb. Occasionally, I get shooting nerve sensations (not painful) when using my hands. Also, my thumbs feel a little achy. And my left hand is worse than the right.
So today I went in for my monthly Lupron shot. Got my vitals taken, got settled in a bay, then had a bit of a wait. My regular infusion nurse wasn't there, and I was seen by my original oncology nurse. The shot itself took only a minute, but we spent quite a bit of time going over my numb and tingly hands.
I told her how frustrating it has been not being able to identify a primary source for all the symptoms, which means not knowing how best to approach the problem. I think I definitely had pinched nerves from swelling, because reducing the swelling (with Lasix) did help a lot. But why was I swollen in the first place, and how can I eliminate the swelling completely? Or would that be impossible, because it's a side effect as long as I'm on Lupron? Could the remaining numbness and tingling actually be a completely different issue, like carpal tunnel syndrome from the exemestane? Or are they related to nerve-regeneration from my DMX? Could the tightness in my fingers be joint pain from the exemestane? I wish I could know if I'm getting symptoms from a problem that can be addressed and fixed, or if I'm having side effects from medication or surgery that might just go away in time, or won't go away and need to be managed.
In March I have appointments scheduled with both my medical oncologist and my Breast Center NP. Hopefully one or both of them will have some insights. If not, my nurse said it might help to see a hand specialist, like an orthopedist or neurologist. I really hope it doesn't come to that.
I also saw my physical therapist today. Regarding my hands, she said that chemo-induced peripheral neuropathy sometimes feels like numbness in just the fingertips. I didn't have neuropathy in my fingers during chemo, but she said sometimes side effects can be delayed and appear even after chemo ends. Well, that certainly was true about my hair, the way I lost my eyebrows about a month after chemo ended. So, I guess I can add chemo to the list of possible causes.
She worked on my cording and said that if it's not bothering me in any way (not causing pain, not limiting my range of motion), then we can consider the problem resolved, even if the actual cord is still there under the skin. At this point, I can only feel the cord in my right underarm if I go looking for it.
She said I've regained full range of motion. Yay! I'm capable of moving my arms (slowly) any which way, but I still feel a bit of discomfort when driving, and sometimes when I need to reach for something. I should continue with stretching every day (I can feel the difference if I skip a day or two), and can start adding in some strengthening exercises. She gave me a modified plank exercise, using a counter-height surface, to add to my regimen.
Last week she was at a conference for cancer-related physical therapy, and she said she learned a lot about deep breathing, which involves breathing through the diaphram and belly. She said deep breathing can help move lymphatic fluid, which might help with the swelling, which in turn could help with the nerve-related symptoms. She instructed me on how to do deep breathing, gave me a new exercise, and also suggested adding deep breathing to my stretches. Apparently, deep breathing can also help with stress and anxiety, so maybe there will be lots of benefits.
Looking ahead, she scheduled my next appointment for a month from now, which actually made me feel a little nervous. Of course the goal is to be in good enough health to be released from all these medical appointments. But I have gotten so used to going to the Cancer Center that not going as often feels like a big transition. Even when I stopped chemo, I still came in almost every week for physical therapy. Without these weekly physical therapy appointments, there is no automatic time set aside for me to check in with a medical professional about how I'm doing. I feel kind of like a baby bird, not quite ready to leave the nest. My physical therapist was very reassuring, saying these feelings are normal, and she sees it all the time. She said if the cording comes back, or if my existing symptoms get worse, or if I'm concerned about anything new, all I have to do is call and set up an appointment. Well, when she put it like that, it sounds perfectly reasonable and doable.
I don't think I'll take Lasix again unless my symptoms relapse. Right now, it's just a little swelling in my left hand. I still wake up with "tightness" in my fingers (my joints feel tight when making a fist), plus mild numbness and tingling in both hands. The bulk of it goes away after getting up and moving around, and everything improves during the day, but a mild tingliness persists, and just my fingertips feel numb. Occasionally, I get shooting nerve sensations (not painful) when using my hands. Also, my thumbs feel a little achy. And my left hand is worse than the right.
So today I went in for my monthly Lupron shot. Got my vitals taken, got settled in a bay, then had a bit of a wait. My regular infusion nurse wasn't there, and I was seen by my original oncology nurse. The shot itself took only a minute, but we spent quite a bit of time going over my numb and tingly hands.
I told her how frustrating it has been not being able to identify a primary source for all the symptoms, which means not knowing how best to approach the problem. I think I definitely had pinched nerves from swelling, because reducing the swelling (with Lasix) did help a lot. But why was I swollen in the first place, and how can I eliminate the swelling completely? Or would that be impossible, because it's a side effect as long as I'm on Lupron? Could the remaining numbness and tingling actually be a completely different issue, like carpal tunnel syndrome from the exemestane? Or are they related to nerve-regeneration from my DMX? Could the tightness in my fingers be joint pain from the exemestane? I wish I could know if I'm getting symptoms from a problem that can be addressed and fixed, or if I'm having side effects from medication or surgery that might just go away in time, or won't go away and need to be managed.
In March I have appointments scheduled with both my medical oncologist and my Breast Center NP. Hopefully one or both of them will have some insights. If not, my nurse said it might help to see a hand specialist, like an orthopedist or neurologist. I really hope it doesn't come to that.
I also saw my physical therapist today. Regarding my hands, she said that chemo-induced peripheral neuropathy sometimes feels like numbness in just the fingertips. I didn't have neuropathy in my fingers during chemo, but she said sometimes side effects can be delayed and appear even after chemo ends. Well, that certainly was true about my hair, the way I lost my eyebrows about a month after chemo ended. So, I guess I can add chemo to the list of possible causes.
She worked on my cording and said that if it's not bothering me in any way (not causing pain, not limiting my range of motion), then we can consider the problem resolved, even if the actual cord is still there under the skin. At this point, I can only feel the cord in my right underarm if I go looking for it.
She said I've regained full range of motion. Yay! I'm capable of moving my arms (slowly) any which way, but I still feel a bit of discomfort when driving, and sometimes when I need to reach for something. I should continue with stretching every day (I can feel the difference if I skip a day or two), and can start adding in some strengthening exercises. She gave me a modified plank exercise, using a counter-height surface, to add to my regimen.
Last week she was at a conference for cancer-related physical therapy, and she said she learned a lot about deep breathing, which involves breathing through the diaphram and belly. She said deep breathing can help move lymphatic fluid, which might help with the swelling, which in turn could help with the nerve-related symptoms. She instructed me on how to do deep breathing, gave me a new exercise, and also suggested adding deep breathing to my stretches. Apparently, deep breathing can also help with stress and anxiety, so maybe there will be lots of benefits.
Looking ahead, she scheduled my next appointment for a month from now, which actually made me feel a little nervous. Of course the goal is to be in good enough health to be released from all these medical appointments. But I have gotten so used to going to the Cancer Center that not going as often feels like a big transition. Even when I stopped chemo, I still came in almost every week for physical therapy. Without these weekly physical therapy appointments, there is no automatic time set aside for me to check in with a medical professional about how I'm doing. I feel kind of like a baby bird, not quite ready to leave the nest. My physical therapist was very reassuring, saying these feelings are normal, and she sees it all the time. She said if the cording comes back, or if my existing symptoms get worse, or if I'm concerned about anything new, all I have to do is call and set up an appointment. Well, when she put it like that, it sounds perfectly reasonable and doable.
Tuesday, February 18, 2020
2/18/19: I Took Another Dose of Lasix + Potassium
Being on more than one medication at a time (Herceptin, Lupron, and exemestane) and still recovering from DMX surgery makes for a real challenge when trying to figure out what is causing which side effect or symptom.
I know the numbness and tingling in my hands, and the stiffness in my legs, all started before I began taking exemestane, but I wonder if the exemestane is making them worse.
"Aching or pain in the joints and muscles" is listed as a side effect for exemestane. Every time I stand up, I feel like an old person. I've also been feeling some achiness in the joints of my fingers, and a very localized pain in the joints of my thumbs; maybe it's from the swelling in my hands, or maybe it's from the exemestane.
"Aching or pain in the joints and muscles" is listed as a side effect for exemestane. Every time I stand up, I feel like an old person. I've also been feeling some achiness in the joints of my fingers, and a very localized pain in the joints of my thumbs; maybe it's from the swelling in my hands, or maybe it's from the exemestane.
Carpal tunnel syndrome, which can cause tingling and weakness in the hands, is also listed as a side effect. It makes me wonder if symptoms of carpal tunnel syndrome might be overlapping with the symptoms from nerves being pinched from swelling, which itself could be related to DMX recovery or Lupron.
These days, I wake up with mild numbness and tingling in both hands. My fingers feel tight if I make a fist, but it's not difficult to make a fist, which used to be a problem. My hands don't feel weak anymore, and they no longer feel like they are constantly on the verge of getting worse. Mostly my hands feel better after moving around for a while, but I still have mild tingling, and numbness in just my fingertips, throughout the day. And my left hand feels worse than my right.
Even though the overall swelling has gone down a lot, I can tell that my left hand is still swollen compared to my right. I didn't feel any difference after taking the second dose of Lasix, but since my left hand still looks and feels puffier, I went ahead and tried a third dose today, along with the prescribed potassium supplement.
These days, I wake up with mild numbness and tingling in both hands. My fingers feel tight if I make a fist, but it's not difficult to make a fist, which used to be a problem. My hands don't feel weak anymore, and they no longer feel like they are constantly on the verge of getting worse. Mostly my hands feel better after moving around for a while, but I still have mild tingling, and numbness in just my fingertips, throughout the day. And my left hand feels worse than my right.
Even though the overall swelling has gone down a lot, I can tell that my left hand is still swollen compared to my right. I didn't feel any difference after taking the second dose of Lasix, but since my left hand still looks and feels puffier, I went ahead and tried a third dose today, along with the prescribed potassium supplement.
Monday, February 10, 2020
2/10/20: I Checked My Insurance Claims Online
As usual, these are the "Claim Total" amounts. We've already met our deductible for our coverage year, so the "You Pay" amounts were all $0.
12/20/19: Medical Oncologist Appointment: $258
1/10/20: Physical Therapy Appointment #14: $393
1/17/20: Maintenance Herceptin #2 (Including Blood Work, Medical Oncologist Hospital, Physical Therapy Appointment #15): $15,858.27
1/17/20: Medical Oncologist Appointment: $260
1/24/20: Lupron (Including Physical Therapy Appointment #16): $964.16
1/31/20: Physical Therapy Appointment #17: $393
Total cost to date: $206,632.88
With insurance, cost to me: $4,254.63
12/20/19: Medical Oncologist Appointment: $258
1/10/20: Physical Therapy Appointment #14: $393
1/17/20: Maintenance Herceptin #2 (Including Blood Work, Medical Oncologist Hospital, Physical Therapy Appointment #15): $15,858.27
1/17/20: Medical Oncologist Appointment: $260
1/24/20: Lupron (Including Physical Therapy Appointment #16): $964.16
1/31/20: Physical Therapy Appointment #17: $393
Total cost to date: $206,632.88
With insurance, cost to me: $4,254.63
2/10/20: I Picked Up Prescriptions
My medical oncologist sent 3 prescriptions to the pharmacy. She said the vitamin D supplement was available over-the-counter, but she provided the prescription in case the pharmacy could fill it for cheaper. The over-the-counter version turned out to be cheaper, plus it was on sale, buy one get one free.
Furosemide (to reduce swelling):
Retail price was $11.99, our prescription co-pay was $4.41.
Klor-Con (potassium chloride):
Retail price was $19.09, our prescription co-pay was $10.00.
Vitamin D3: $10.79
Total cost to date: $188,506.45
With insurance, cost to me: $4,254.63
Furosemide (to reduce swelling):
Retail price was $11.99, our prescription co-pay was $4.41.
Klor-Con (potassium chloride):
Retail price was $19.09, our prescription co-pay was $10.00.
Vitamin D3: $10.79
Total cost to date: $188,506.45
With insurance, cost to me: $4,254.63
2/10/20: Medical Oncologist Appointment
I am so sad about my medical oncologist leaving! I got 3 big hugs today. And I teared up.
She told me which hospital she is going to. It's one of the best in the nation. She's going to be an associate director of an inpatient oncology program. She said she'll be working with a number of people who used to work at my Cancer Center. It sounds like there isn't much room for professional growth in my hospital; the other hospital is bigger and has a lot more money.
She said she worked out a deal with the new hospital that would allow her to continue seeing her existing patients for outpatient care, if they want to stay with her. I love her, but I also love my infusion nurse, and physical therapist, and the providers in the Breast Center. I don't want to change everything in the middle of active treatment, and who knows, maybe I'll like my new oncologist just fine.
My old oncologist seemed a little annoyed that the new oncologist scheduled my next appointment so far in the future (6 weeks from the last appointment, 3 weeks from now), particularly since I reported the symptoms in my hands at the last appointment. But in her defense, at the time, I had only experienced symptoms for I think 2 days, and I don't think I sounded too distressed about it yet.
Anyway. I gave her the whole history about my hands feeling puffy and tight and numb and tingly. I think the Lasix (furosemide) did work because my hands have continued to feel better since Saturday. I can hold things in the morning without my hands feeling weak or painful, and I haven't felt any numbness at all. I even skipped my morning routine today and yesterday because it didn't feel necessary. I still have a bit of tingling, but it is very mild, and it doesn't interfere with my ability to use my hands. I can tell the swelling itself is better, too, because I'd been wearing my watch wristband on a looser setting since all this started, and today I was able to switch it back to its original setting.
My doctor gave me a prescription for Lasix to take as needed. Apparently, Lasix makes it hard for the kidneys to absorb potassium, so she also gave me a prescription for a potassium supplement.
During my physical exam, she said my hands still look a little puffy, so I can go ahead and take another dose of Lasix to see if getting rid of even more excess fluid might help make the last of the tingling go away.
I told her my theory about my arms swelling because of overuse. She said that's possible, but also said the Lupron can cause fluid retention, which is what the new oncologist said, too.
I told her my theory about my arms swelling because of overuse. She said that's possible, but also said the Lupron can cause fluid retention, which is what the new oncologist said, too.
She said my recent blood work showed that my vitamin D is low, so she gave me another prescription for a vitamin D3 supplement.
Also, my "phos" (phosphate) is a little high. She said she doesn't know why my phos would be high, but maybe taking the vitamin D will help that, too. If not, then I might need to see another specialist, like an endocrinologist.
I remember that my phos was high back in December, but I didn't ask about it then. I guess I figured it might just be a fluke. A little bit of Googling tells me that a high phosphate level could be linked to osteoporosis, which I know is a risk when taking exemestane. I checked my labs online, though, and my phos has been high since before I started exemestane. (My phos went back to normal after that one time it was high in December, and then it was high again on 1/17/20 and 2/7/20.) Of course, osteoporosis is also a risk when taking Lupron.
I have to say, it's pretty depressing, having all these prescriptions, and worrying about osteoporosis, at age 43.
I have to say, it's pretty depressing, having all these prescriptions, and worrying about osteoporosis, at age 43.
Saturday, February 8, 2020
2/8/20: My Hands Felt Better After Taking Lasix
After I took the Lasix yesterday, I expected a dramatic increase in having to pee, but that didn't happen. I don't even think I had to go more often than usual, but maybe the volume was higher.
Anyway, I did wake up with my hands feeling better!
I first noticed a difference in the middle of the night. Usually if I have to pull my covers up, it actually hurts my hands to get a firm grasp on my blankets. But last night, I didn't have that problem.
When I woke up, my hands still felt tight, especially when making a fist, but unlike before, I wouldn't say it was difficult to make a fist.
I did feel some tingling, at times isolated to my pinky and ring finger, but it was a lot more mild, and didn't come with any numbness.
I was even able to linger in bed a little while, without my hands feeling worse, instead of having to jump up as soon as I wake up, as I've had to do recently.
I still did my morning routine, and I still felt some mild tingling throughout the morning, but it didn't actually disrupt my activities, like I didn't have to stop brushing my teeth to keep symptoms from getting worse.
I'm happy to see some improvement! Will have to see how the next couple days go...
Anyway, I did wake up with my hands feeling better!
I first noticed a difference in the middle of the night. Usually if I have to pull my covers up, it actually hurts my hands to get a firm grasp on my blankets. But last night, I didn't have that problem.
When I woke up, my hands still felt tight, especially when making a fist, but unlike before, I wouldn't say it was difficult to make a fist.
I did feel some tingling, at times isolated to my pinky and ring finger, but it was a lot more mild, and didn't come with any numbness.
I was even able to linger in bed a little while, without my hands feeling worse, instead of having to jump up as soon as I wake up, as I've had to do recently.
I still did my morning routine, and I still felt some mild tingling throughout the morning, but it didn't actually disrupt my activities, like I didn't have to stop brushing my teeth to keep symptoms from getting worse.
I'm happy to see some improvement! Will have to see how the next couple days go...
Friday, February 7, 2020
2/7/20: Maintenance Herceptin #3 + Physical Therapy Appointment #18
Today I arrived just in time for my 10:30 appointment. The medical assistant took my vitals, then helped me get settled into a bay.
My infusion nurse came in shortly after and asked about my legs and hands. I told her my legs were the lesser issue of the two; they still feel tired and stiff, maybe even more so since starting the exemestane, but mostly they just make me feel like an old person. I'm doing additional leg stretches every day, but still, any time I get up to stand, it feels like I've been in one position for hours, even if it's only been a few minutes.
Then I told her all about my hands, my observations and how I've been managing the symptoms. She said it sounded like the symptoms were "taking over my life", by which she meant, the symptoms aren't getting worse, they may even be getting better, but only because I'm following all these rules all day (e.g., sleeping in specific positions, doing my morning routine, limiting my arm and hand use to ward off the tingling). She said it sounded exhausting, and not sustainable, and we need to try to figure out how to address the root problem.
Around this time, my nurse stepped out to take a call from my medical oncologist. Not the new one, but my original one, who is still working at the Cancer Center through February. When she came back, she said my doctor wants to see me for an appointment, to try to get a handle on what's going on with my hands. I scheduled it for next week.
My medical oncologist also suggested a one-time dose of Lasix (general name furosemide), a pill that would make me pee a lot, to help eliminate excess fluid. The idea is, if my symptoms are from nerves being crowded because of swelling, let's see if reducing the swelling can improve the symptoms. It might also help me to figure out if the discomfort I feel when making fists, and a new pain I sometimes have in the joints of my thumbs, are from swelling or joint pain (a side effect of exemestane). I took the pill this afternoon, so we'll see how things feel tomorrow morning.
My nurse accessed my port around 11:00. She said she would draw blood to see if anything in my blood work could help explain the swelling, or at least rule things out.
I told her that I've been thinking about getting my port out after all. We're thinking of taking a trip later this summer, between my treatments, and I'm uneasy about travelling too far from my Cancer Center with a sort of open wound that is at risk of infection. She agreed that it would make sense to get the port out, maybe in April, giving me a couple months to heal before the summer. She counted out the number of remaining treatments for which I would need to get an IV in my arm, and she even put a tourniquet on my left arm to count the accessible veins. She said it would be "totally doable". (The IV would be limited to just my left arm, where I had 1 lymph node removed, to minimize the risk of lymphedema on my right side, where I had 5 lymph nodes removed.)
I started the Herceptin at 11:30, and finished around 12:00.
I went in for my physical therapy appointment around 12:30. She re-measured my arms and found that they are less swollen than they were last time, but still swollen compared to my original measurements.
She had some ideas for helping to alleviate the swelling in my hands, like kinesio taping and compression sleeves (even if I don't technically have lymphedema). We decided to first see how the Lasix works out, and also see if my doctor has any other ideas, but it was reassuring to know that there are a number of options still in the wings if we need them.
We talked a bit about how I'm not even sure if some of the discomfort in my hands could be from joint pain, rather than swelling. She did say that joint pain, as a side effect of exemestane, does commonly appear in fingers and thumbs.
She worked on my cording, which continues to improve. She'll be away next week, and I hope my cording won't get worse without the weekly massage. I'll have to be sure to keep up my stretching!
Finally, she had me do some exercises to try to isolate the source of some of the hand tingling. It didn't seem like she could make any clear conclusions, but she did give me one more exercise to do to help relieve tension along my spine.
All told, I think I spent almost an hour in physical therapy today. I left the Cancer Center around 1:30, so it was a 3-hour visit.
Oh, I wanted to mention. During my infusion, my nurse brought me a free gift. Quite frequently, the Cancer Center receives donations to give to cancer patients. People can be so nice! Today's gift was a toiletry/cosmetic bag filled with little useful items.
My posts are usually so focused on my medical journey that I guess I'd forgotten to post about these little gifts. This is actually the third free gift I've gotten. The other two were both like free sample kits from Beautycounter.
Around this time, my nurse stepped out to take a call from my medical oncologist. Not the new one, but my original one, who is still working at the Cancer Center through February. When she came back, she said my doctor wants to see me for an appointment, to try to get a handle on what's going on with my hands. I scheduled it for next week.
My medical oncologist also suggested a one-time dose of Lasix (general name furosemide), a pill that would make me pee a lot, to help eliminate excess fluid. The idea is, if my symptoms are from nerves being crowded because of swelling, let's see if reducing the swelling can improve the symptoms. It might also help me to figure out if the discomfort I feel when making fists, and a new pain I sometimes have in the joints of my thumbs, are from swelling or joint pain (a side effect of exemestane). I took the pill this afternoon, so we'll see how things feel tomorrow morning.
My nurse accessed my port around 11:00. She said she would draw blood to see if anything in my blood work could help explain the swelling, or at least rule things out.
I told her that I've been thinking about getting my port out after all. We're thinking of taking a trip later this summer, between my treatments, and I'm uneasy about travelling too far from my Cancer Center with a sort of open wound that is at risk of infection. She agreed that it would make sense to get the port out, maybe in April, giving me a couple months to heal before the summer. She counted out the number of remaining treatments for which I would need to get an IV in my arm, and she even put a tourniquet on my left arm to count the accessible veins. She said it would be "totally doable". (The IV would be limited to just my left arm, where I had 1 lymph node removed, to minimize the risk of lymphedema on my right side, where I had 5 lymph nodes removed.)
I started the Herceptin at 11:30, and finished around 12:00.
I went in for my physical therapy appointment around 12:30. She re-measured my arms and found that they are less swollen than they were last time, but still swollen compared to my original measurements.
She had some ideas for helping to alleviate the swelling in my hands, like kinesio taping and compression sleeves (even if I don't technically have lymphedema). We decided to first see how the Lasix works out, and also see if my doctor has any other ideas, but it was reassuring to know that there are a number of options still in the wings if we need them.
We talked a bit about how I'm not even sure if some of the discomfort in my hands could be from joint pain, rather than swelling. She did say that joint pain, as a side effect of exemestane, does commonly appear in fingers and thumbs.
She worked on my cording, which continues to improve. She'll be away next week, and I hope my cording won't get worse without the weekly massage. I'll have to be sure to keep up my stretching!
Finally, she had me do some exercises to try to isolate the source of some of the hand tingling. It didn't seem like she could make any clear conclusions, but she did give me one more exercise to do to help relieve tension along my spine.
All told, I think I spent almost an hour in physical therapy today. I left the Cancer Center around 1:30, so it was a 3-hour visit.
Oh, I wanted to mention. During my infusion, my nurse brought me a free gift. Quite frequently, the Cancer Center receives donations to give to cancer patients. People can be so nice! Today's gift was a toiletry/cosmetic bag filled with little useful items.
My posts are usually so focused on my medical journey that I guess I'd forgotten to post about these little gifts. This is actually the third free gift I've gotten. The other two were both like free sample kits from Beautycounter.
Monday, February 3, 2020
2/3/20: Sleeping on My Right Side Helped
I've been sleeping on my back for so long, I honestly forgot that sleeping on my side was an option.
Since my hands feel worst in the mornings, I wondered if sleeping on my back was part of the problem. I've noticed that even when I try to lean back while sitting, or lie down on the couch to rest, any reclining position makes my hands feel worse.
Sleeping on my right side actually did seem to help. I was able to find a kind of natural position for my arms, keeping them mostly straight, and they felt better than when I sleep on my back. Even now, my right arm and hand feel better than my left.
Still, I woke up a couple times because of my hands, and the only way to really get relief is to get up and walk around.
After one waking, going back to bed, I tried sleeping on my left side. My numb and tingly chest makes sleeping on either side a little weird, but the port on my left side makes it feel even weirder. Plus, I couldn't find a comfortable position for my arms. I'll keep trying, though.
Meanwhile, during the day, my hands definitely feel best when I am walking around and being active. But I still suspect that being too active is a factor in the swelling in the first place. So I'm trying to find a balance of keeping active, but not too active.
Since my hands feel worst in the mornings, I wondered if sleeping on my back was part of the problem. I've noticed that even when I try to lean back while sitting, or lie down on the couch to rest, any reclining position makes my hands feel worse.
Sleeping on my right side actually did seem to help. I was able to find a kind of natural position for my arms, keeping them mostly straight, and they felt better than when I sleep on my back. Even now, my right arm and hand feel better than my left.
Still, I woke up a couple times because of my hands, and the only way to really get relief is to get up and walk around.
After one waking, going back to bed, I tried sleeping on my left side. My numb and tingly chest makes sleeping on either side a little weird, but the port on my left side makes it feel even weirder. Plus, I couldn't find a comfortable position for my arms. I'll keep trying, though.
Meanwhile, during the day, my hands definitely feel best when I am walking around and being active. But I still suspect that being too active is a factor in the swelling in the first place. So I'm trying to find a balance of keeping active, but not too active.
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