The first three days of Ibrance were full of mild nausea, moderate fatigue, and general ill-feeling. Thankfully by the Monday I felt like myself again. The fatigue has continued, but who doesn't appreciate an afternoon nap? The first two weeks were basically fine.
Today, the beginning of week three, started with more fatigue (i.e., I didn't get out of bed until after 1 PM), and then moved on to diarrhea. So I am still in my pajamas, even though it's lovely outside and I had planned to run errands and do some garden work. Thankfully Dr G gave me great meds to address the diarrhea.
I'll take the Ibrance for one more week (21 days total), then get a week off. Dr G wants me to have labs taken again in two weeks. I'll see him after Passover and hopefully start another Ibrance cycle if my white, red and platelet counts stay high enough.
So I'm taking today off and will nap again in between doing loads of laundry. And that's life on chemo!
Showing posts with label chemotherapy. Show all posts
Showing posts with label chemotherapy. Show all posts
Jan 28, 2020
Jul 31, 2017
Major Taxotere side effects
On Friday the major Taxotere side effects hit me hard. I would have chalked it up to participating in the Gilda's Club fashion show and luncheon, since invariably something goes wrong for me that day, but the discomfort continues all weekend.
I had offered to speak in a short film about Gilda Radner and the impact her life continues to have 25 years after her death. This brought me to the Westin at (for me) they very early hour of 10 AM, dressed to the nines and prepared with memories and a quote from Gilda. The filmmaker asked me a few general questions, I shared my quote at her request, and she seemed pleased with my short interview.
The luncheon featured a photo booth where a (volunteer?) photographer took pictures of people in front of a cororate-sponsored backdrop. I got in line since I had dressed so well and here is the photo he took. (I made a copy with my iPhone.)
Back to Taxotere side effects.
FRIDAY
I went from the Westin straight to my oncologist's office, hobbling on both feet. Dr G and Nurse Jacque looked at me and said "hand-foot syndrome." Now why didn't I recognize that? Dr G told me to go home and start the henna again, since I believed it helped me last time this happened. He also prescribed a short, tapering course of steroids to reduce the swelling in my hands. For the pain in my mouth (mucositis? stomatitis? mouth sores, for the laypeople among us) he wrote a scrip for 25 mcg Fentanyl patches. The patch form delivers a steady dose of pain relief for 72 hours. He also gave me an Rx for more hydrocodone to relieve the break-through pain.
Next I called my naturopath for a recommendation on more ways to treat the mouth sores. Dr Bufi suggested gargling with baking soda mixed in water but not too strong. I should also have asked one of these docs for some Magic Mouthwash, but I could barely walk by then and wasn't about to go to yet a third (compounding) pharmacy.
At home I mixed up some henna, put on my pajamas, and slathered my feet with it. Even the cool sensation helped. Now my feet and hands are bright orange but the henna does seem to help.
My friend H came over and walked the dogs, helped me change the bed linens, and cooked us a lovely Shabbat dinner of Vietnamese spring rolls with fresh vegetables and fried tofu and homemade peanut sauce. After dinner she taught me how to get started on the iPad a friend gave me. We spent a lovely evening together and I was in bed by 10 PM.
SATURDAY
I woke up at the crack of dawn to feed the dogs. At least they bear with my stiff movements and are happy to go back to sleep with me after they eat. They're also willing to poop outdoors and saved me the discomfort of trying to walk them.
I started the steroids as instructed before breakfast and stayed in my jammies most of the day but at some point I couldn't stand myself. I took a shower and actually dressed and sat outside in the sunshine. Then I took each dog into the shower for a quick shampoo which they desperately needed. I Skyped with Rik's family to show off my clean, wet doggies, spoke with my mother and felt much improved by this point. However, I am still popping hydrocodone every 3-4 hours for breakthrough pain in my mouth and gargling with diluted baking soda every hour. It was hard to get a forkful of food into my mouth at dinnertime.
The rest of the day passed reading a new book by Michel Faber (not quite as good as I'd hoped for), eating leftover fesenjan with rice for dinner. and watching the second half of The Music Man. Robert Preston! I would have fallen in love with him to if he'd used the "think system" on me instead of Shirley Jones. And little Ronny Howard was only eight when he made this movie. Such talent evident at such a young age!
SUNDAY
I slept off and on (remember, taking steroids?), woke up early again with the dogs, fed 'em and went back to bed. Around 8 AM I got up, ate some yogurt, drank a mocha, and reapplied some henna to my left hand. Still haven't showered or dressed or walked the dogs but I see some of that in my future. Plus lunch out with a friend.
It's time to stop blogging and move on with my day. I do want to get out to see my friend. The sun is shining and I refuse to let cancer side effects make me a prisoner in my own home. But on Monday I'm going to have a serious talk with Dr G about how this is not the way to maintain quality of life.
And that Gilda quote I chose?
I had offered to speak in a short film about Gilda Radner and the impact her life continues to have 25 years after her death. This brought me to the Westin at (for me) they very early hour of 10 AM, dressed to the nines and prepared with memories and a quote from Gilda. The filmmaker asked me a few general questions, I shared my quote at her request, and she seemed pleased with my short interview.
The luncheon featured a photo booth where a (volunteer?) photographer took pictures of people in front of a cororate-sponsored backdrop. I got in line since I had dressed so well and here is the photo he took. (I made a copy with my iPhone.)
 |
| Karan Dannenberg, who dressed me for my first Gila's Club fashion show (which I never attended, due to a hospital stay), recognized me, as she always does, immediately said "Nicole Miller," (the dress's designer), and chatted me up for a few minutes. The shawl is courtesy my mother. |
Back to Taxotere side effects.
FRIDAY
I went from the Westin straight to my oncologist's office, hobbling on both feet. Dr G and Nurse Jacque looked at me and said "hand-foot syndrome." Now why didn't I recognize that? Dr G told me to go home and start the henna again, since I believed it helped me last time this happened. He also prescribed a short, tapering course of steroids to reduce the swelling in my hands. For the pain in my mouth (mucositis? stomatitis? mouth sores, for the laypeople among us) he wrote a scrip for 25 mcg Fentanyl patches. The patch form delivers a steady dose of pain relief for 72 hours. He also gave me an Rx for more hydrocodone to relieve the break-through pain.
Next I called my naturopath for a recommendation on more ways to treat the mouth sores. Dr Bufi suggested gargling with baking soda mixed in water but not too strong. I should also have asked one of these docs for some Magic Mouthwash, but I could barely walk by then and wasn't about to go to yet a third (compounding) pharmacy.
At home I mixed up some henna, put on my pajamas, and slathered my feet with it. Even the cool sensation helped. Now my feet and hands are bright orange but the henna does seem to help.
My friend H came over and walked the dogs, helped me change the bed linens, and cooked us a lovely Shabbat dinner of Vietnamese spring rolls with fresh vegetables and fried tofu and homemade peanut sauce. After dinner she taught me how to get started on the iPad a friend gave me. We spent a lovely evening together and I was in bed by 10 PM.
SATURDAY
I woke up at the crack of dawn to feed the dogs. At least they bear with my stiff movements and are happy to go back to sleep with me after they eat. They're also willing to poop outdoors and saved me the discomfort of trying to walk them.
I started the steroids as instructed before breakfast and stayed in my jammies most of the day but at some point I couldn't stand myself. I took a shower and actually dressed and sat outside in the sunshine. Then I took each dog into the shower for a quick shampoo which they desperately needed. I Skyped with Rik's family to show off my clean, wet doggies, spoke with my mother and felt much improved by this point. However, I am still popping hydrocodone every 3-4 hours for breakthrough pain in my mouth and gargling with diluted baking soda every hour. It was hard to get a forkful of food into my mouth at dinnertime.
The rest of the day passed reading a new book by Michel Faber (not quite as good as I'd hoped for), eating leftover fesenjan with rice for dinner. and watching the second half of The Music Man. Robert Preston! I would have fallen in love with him to if he'd used the "think system" on me instead of Shirley Jones. And little Ronny Howard was only eight when he made this movie. Such talent evident at such a young age!
SUNDAY
I slept off and on (remember, taking steroids?), woke up early again with the dogs, fed 'em and went back to bed. Around 8 AM I got up, ate some yogurt, drank a mocha, and reapplied some henna to my left hand. Still haven't showered or dressed or walked the dogs but I see some of that in my future. Plus lunch out with a friend.
It's time to stop blogging and move on with my day. I do want to get out to see my friend. The sun is shining and I refuse to let cancer side effects make me a prisoner in my own home. But on Monday I'm going to have a serious talk with Dr G about how this is not the way to maintain quality of life.
And that Gilda quote I chose?
"Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious Ambiguity."
Jun 19, 2017
Healing
I'm pleased I felt healthy enough to travel to Washington DC at the invitation of Susan G. Komen © for a breast cancer bloggers summit this past weekend.
On Tuesday I saw The Amazing & Wonderful Nurse Jacque, who gave me a Neulasta shot so that my white blood cell count would rise and make me fit for airplane travel. Ever since the news story broke about the cancer patient who Alaska Airlines asked to deboard a plane, Dr G has recommended his patients carry a letter confirming his medical opinion that they may travel. I carried the letter, wore a mask (to prevent catching something from another passenger), and showed the letter to every flight attendant. No one gave me any trouble. I flew Alaska Air.
The GelClair arrived at the hotel before I did -- a full case of it. I really only needed one box for the duration of my trip, but didn't realize I'd receive the entire order at one time. I put off worrying about to pack it to bring home.
The combination of Orajel and GelClair has helped tremendously. I still have about 10-12 mouth sores, and found it difficult and painful to chew over the weekend, but I did eat. And somehow managed to gain five pounds.
I spent too many hours in shoes that weren't supportive enough, developed blisters and swollen feet. My feet actually swelled so much that I traveled home in my UGG bedroom slippers, the only things that felt comfortable. I haven't had this experience before while traveling and wasn't prepared with compression socks.
When I saw The Amazing & Wonderful Nurse Jacque today to have her change my PICC line dressing, she looked at my feet and recommended I start wearing the compression socks until my feet return to normal size. Fortunately I have several pair left over from previous hospital stays. I've been in them all day and I can already see an improvement. I also plan to sleep again with my feet elevated.
My hand-foot syndrome has begun to recover. The skin is peeling from my left thumb. Did you ever pick at scabs when you were a child? I have that same irresistible urge to pick at the dead skin and cut it away. The henna did help.
I changed my fentanyl patch while away and reduced from 100 mcg to 75 mcg. I'll be sure to report this when I see Dr G on Wednesday. Maybe he will have me reduce it again. Or not yet.
My mouth tastes funny all the time and food doesn't taste right either. This feels like a new side effect to me, although I know many people go through it. I just don't remember going through this before.
And I should receive some news on next chemo steps on Wednesday. Hopefully not Taxotere. That one dose and its ridiculously painful side effects is plenty, thank you.
More soon on the Komen © blogger summit later.
On Tuesday I saw The Amazing & Wonderful Nurse Jacque, who gave me a Neulasta shot so that my white blood cell count would rise and make me fit for airplane travel. Ever since the news story broke about the cancer patient who Alaska Airlines asked to deboard a plane, Dr G has recommended his patients carry a letter confirming his medical opinion that they may travel. I carried the letter, wore a mask (to prevent catching something from another passenger), and showed the letter to every flight attendant. No one gave me any trouble. I flew Alaska Air.
The GelClair arrived at the hotel before I did -- a full case of it. I really only needed one box for the duration of my trip, but didn't realize I'd receive the entire order at one time. I put off worrying about to pack it to bring home.
The combination of Orajel and GelClair has helped tremendously. I still have about 10-12 mouth sores, and found it difficult and painful to chew over the weekend, but I did eat. And somehow managed to gain five pounds.
I spent too many hours in shoes that weren't supportive enough, developed blisters and swollen feet. My feet actually swelled so much that I traveled home in my UGG bedroom slippers, the only things that felt comfortable. I haven't had this experience before while traveling and wasn't prepared with compression socks.
When I saw The Amazing & Wonderful Nurse Jacque today to have her change my PICC line dressing, she looked at my feet and recommended I start wearing the compression socks until my feet return to normal size. Fortunately I have several pair left over from previous hospital stays. I've been in them all day and I can already see an improvement. I also plan to sleep again with my feet elevated.
My hand-foot syndrome has begun to recover. The skin is peeling from my left thumb. Did you ever pick at scabs when you were a child? I have that same irresistible urge to pick at the dead skin and cut it away. The henna did help.
I changed my fentanyl patch while away and reduced from 100 mcg to 75 mcg. I'll be sure to report this when I see Dr G on Wednesday. Maybe he will have me reduce it again. Or not yet.
My mouth tastes funny all the time and food doesn't taste right either. This feels like a new side effect to me, although I know many people go through it. I just don't remember going through this before.
And I should receive some news on next chemo steps on Wednesday. Hopefully not Taxotere. That one dose and its ridiculously painful side effects is plenty, thank you.
More soon on the Komen © blogger summit later.
Apr 10, 2017
Update from Dr G
Rik and I saw Dr G last week. He wants to retest my lungs with another CT to make sure my pneumonia has ended. Also I think he wants to me take a blood test for pneumonia markers. We even talked about the possibility of the pneumonia vaccine to prevent another month like this.
As far as treatment goes, we have several options --
He wants to incorporate neuroprotective medicines. I'm not sure which meds he means, but the idea is to prevent further neuropathy in my feet and hands.
As far as treatment goes, we have several options --
- Pembrolizumab trial (If I qualify. Usually they want someone with fewer pre-treatments and bone-only mets.)
- Testing my tumor for micro satellite instability (this is the very newest treatment)
- Choice of chemo: Taxol (paclitaxel, which I had one time, a few years ago), Ixempra (ixabepilone), or Cytoxan (cyclophosphamide, which I had during my original early stage cancer 16 years ago)
He wants to incorporate neuroprotective medicines. I'm not sure which meds he means, but the idea is to prevent further neuropathy in my feet and hands.
Nov 14, 2016
Radiation etc.
It's been a whirlwind week of doctors but now I know what to expect through the next several weeks. If you remember, I told my mets many years ago that if they were quiet, they could live with me, but if they got noisy, I'd bring up the big treatments. So here we go!
1. I met with Dr Sandra Vermeulen, the gamma knife (targeted radiation) specialist, and she says she can zap my brain mets. Maybe only some of them, but some is better than none! She's going after the ones on the top of my head, where most of them live. Then she's going after the three largest in my cerebellum. We actually had a chat after our talk about where to zap, and she's not a chatty lady. Go Dr Sandra!
2. Then I saw Dr Stephen Eulau, my general radiation oncologist. He's treated me several times over the years, from the very beginning in 1999. He's an incredibly sweet, kind man, just the type of person you want on your care team. Now he will treat the two skin mets (the one on my head, the one on my chest), the enlarged lymph node on my neck, the newly diagnosed left shoulder bone met and the also newly diagnosed right lower rib bone met. I had a simulation last week and have to wear a plastic mask each time. It's got holes for my nostrils, eyes and mouth, but still it's icky. I get zapped for ten days, thirty minutes at a time. I didn't like the face mask at all, but a little Ativan helped relax me, as well as some yoga breathing and remembering to keep the top of my head touching the inside of the mask. It's pretty awful but I am tough. Tough enough to deal with a two inch round permanent hair loss. I'll just have to have a comb over like The Donald.
3. I spoke to the wonderful nurse Sally at the Cherry Hill Wound Center and she told me to stop wearing the plastic-ey Tielle bandages and switch to a gauze bandage attached to my skin with tape after I start radiation. I will be sad to lose the Tielles since they work so well and I can wear them in the shower with no extra covering, but Sally told me I can either remove the gauze bandage or cover it with Cling Wrap in the shower. Either way works fine.
4. Dr Flugstad the orthopedist was so happy to see me. It had been two years since our last visit. He's the amazing guy who fixed my left leg and kept me dancing all these years. Dr F confirmed that my left shoulder was not in immediate danger of a fracture (yay!) and that I also have some arthritis in that spot (boo). I guess not a surprise, since I have occasional off-and-on pain from arthritis in both thumbs. He also looked at the recent X-ray of my right rib and thought radiation would be fine for that spot, but noted that I have multiple bone mets in my ribs anyway. Then he watched me walk and confirmed that with the lift in my left shoe (and they were pretty amazing ankle boots) I could walk and stand without issue.
5. Then last and of course best, I saw the Amazing and Wonderful Nurse Jacque. She had to send me over to the lab for a blood draw, since I don't have a PICC line anymore. We shmoozed a little and Dr G came in for an exam. He still wants me to see someone at SCCA for a second opinion. The only issue I have there is that they think inside the box and Dr G clearly thinks outside the box. But as he says, they know what's coming up next in the research and that can only help. So he will contact Dr Julie Gralow's scheduler. When I spoke with them she couldn't see me until January. Maybe Dr G can do more. And while I was sitting with him, he took a call from a doctor at interventional radiology about putting a "passport" in my right arm. He called me not a patient, but a close friend who is a patient of many years, gave him all the reasons I couldn't have another port-a-cath. From memory. I was so pleased to be in the room while he spoke to this doctor about me and let me overhear the details. This is why Dr G is clearly the doc for me (with apologies for the awful rhyme).
6. I also went to my weekly support group. When I gave my update -- I hadn't seen them in two weeks, since my collapse with shakes and fever while there -- four people offered to help while I was in radiation. Walk the dogs. Drive me to or from. Bring whatever I needed. It was so lovely to have friends new and old step up to help, even while they deal with metastatic cancer. Luckily when I scheduled the radiation, almost all of it will be at times when Rik can drive us both.
7. On Friday I had my latest dose of Alimta (pemetrexate), the new chemo Dr G wants me to take. I ran into a friend and we managed to get the nurses to put our chairs close together. She was alone but I had a friend and the three of us enjoyed a really good visit. This is my second dose of Alimta, and other than feeling like crap when I got home, I spent the day today lazing in bed. Dr G wants me to take Decadron on the day of chemo and for three days afterwards, but it's a very light dose for home. I hope not to have the midnight shopping mania so frequently associated with this steroid. Alimta is given once every three weeks.
That's a lot to report but it should take me through the next two weeks. I will write about how the radiation goes. Onward and upward in every direction!
1. I met with Dr Sandra Vermeulen, the gamma knife (targeted radiation) specialist, and she says she can zap my brain mets. Maybe only some of them, but some is better than none! She's going after the ones on the top of my head, where most of them live. Then she's going after the three largest in my cerebellum. We actually had a chat after our talk about where to zap, and she's not a chatty lady. Go Dr Sandra!
2. Then I saw Dr Stephen Eulau, my general radiation oncologist. He's treated me several times over the years, from the very beginning in 1999. He's an incredibly sweet, kind man, just the type of person you want on your care team. Now he will treat the two skin mets (the one on my head, the one on my chest), the enlarged lymph node on my neck, the newly diagnosed left shoulder bone met and the also newly diagnosed right lower rib bone met. I had a simulation last week and have to wear a plastic mask each time. It's got holes for my nostrils, eyes and mouth, but still it's icky. I get zapped for ten days, thirty minutes at a time. I didn't like the face mask at all, but a little Ativan helped relax me, as well as some yoga breathing and remembering to keep the top of my head touching the inside of the mask. It's pretty awful but I am tough. Tough enough to deal with a two inch round permanent hair loss. I'll just have to have a comb over like The Donald.
3. I spoke to the wonderful nurse Sally at the Cherry Hill Wound Center and she told me to stop wearing the plastic-ey Tielle bandages and switch to a gauze bandage attached to my skin with tape after I start radiation. I will be sad to lose the Tielles since they work so well and I can wear them in the shower with no extra covering, but Sally told me I can either remove the gauze bandage or cover it with Cling Wrap in the shower. Either way works fine.
4. Dr Flugstad the orthopedist was so happy to see me. It had been two years since our last visit. He's the amazing guy who fixed my left leg and kept me dancing all these years. Dr F confirmed that my left shoulder was not in immediate danger of a fracture (yay!) and that I also have some arthritis in that spot (boo). I guess not a surprise, since I have occasional off-and-on pain from arthritis in both thumbs. He also looked at the recent X-ray of my right rib and thought radiation would be fine for that spot, but noted that I have multiple bone mets in my ribs anyway. Then he watched me walk and confirmed that with the lift in my left shoe (and they were pretty amazing ankle boots) I could walk and stand without issue.
5. Then last and of course best, I saw the Amazing and Wonderful Nurse Jacque. She had to send me over to the lab for a blood draw, since I don't have a PICC line anymore. We shmoozed a little and Dr G came in for an exam. He still wants me to see someone at SCCA for a second opinion. The only issue I have there is that they think inside the box and Dr G clearly thinks outside the box. But as he says, they know what's coming up next in the research and that can only help. So he will contact Dr Julie Gralow's scheduler. When I spoke with them she couldn't see me until January. Maybe Dr G can do more. And while I was sitting with him, he took a call from a doctor at interventional radiology about putting a "passport" in my right arm. He called me not a patient, but a close friend who is a patient of many years, gave him all the reasons I couldn't have another port-a-cath. From memory. I was so pleased to be in the room while he spoke to this doctor about me and let me overhear the details. This is why Dr G is clearly the doc for me (with apologies for the awful rhyme).
6. I also went to my weekly support group. When I gave my update -- I hadn't seen them in two weeks, since my collapse with shakes and fever while there -- four people offered to help while I was in radiation. Walk the dogs. Drive me to or from. Bring whatever I needed. It was so lovely to have friends new and old step up to help, even while they deal with metastatic cancer. Luckily when I scheduled the radiation, almost all of it will be at times when Rik can drive us both.
7. On Friday I had my latest dose of Alimta (pemetrexate), the new chemo Dr G wants me to take. I ran into a friend and we managed to get the nurses to put our chairs close together. She was alone but I had a friend and the three of us enjoyed a really good visit. This is my second dose of Alimta, and other than feeling like crap when I got home, I spent the day today lazing in bed. Dr G wants me to take Decadron on the day of chemo and for three days afterwards, but it's a very light dose for home. I hope not to have the midnight shopping mania so frequently associated with this steroid. Alimta is given once every three weeks.
That's a lot to report but it should take me through the next two weeks. I will write about how the radiation goes. Onward and upward in every direction!