Ixempra
Comments
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So sorry about the mouth sores. Ouch! My mouth is my Achilles Heel. I need to manage it on every treatment.
Garden taking shape. 😊 I bought an egg chair so that I could curl up with a good book in the sun (and maybe have a glass of wine when I am not on pain meds and steroids!).
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I had cycle 6 infusion of Ixempra today. Once again, things went well. My blood tests results were good. My liver tests continue to behave. It was chilly in the infusion room. I turned on the seat heater on the recliner (I wish I had one at home.) I was still cold, so the nurse wrapped me in warm blankets. It felt wonderful, and I took a nice little nap.
My MO reviewed the scan results with me. After looking at the scans and talking to the two radiologists who wrote the reports (one for thorax CT scan and the other for abdomen and pelvis), he feels that bone and spleen Mets are stable, but liver Mets show some progression. This was a disappointment for me since I had decided that everything was stable. At any rate, we are sticking with Ixempra for now. Once we have results of TMs, my MO might rethink it, but I had treatment today anyway. I feel great right now, so I would like to stay with this treatment.
Spring has finally arrived here. My rhododendron bushes are starting to fill with spectacular blooms. The hostas are big and healthy. Other perennials are popping up through the soil. All is well until the deer come and snack on everything. I have planted some annuals in pots for my front steps and back deck. The grass is growing. The weeds are being pulled. I hope to plant a few vegetables this weekend. I will also fill in the perennial gardens with a few new plants. I am enjoying another spring. YAY!
Sadiesservant, I hope your garden is taking shape and doing well and that your relaxing porch oasis is ready for you to sit on and enjoy some well-deserved relaxation.
I will post my TM results when they are posted to the patient portal.
Hugs and prayers from, Lynne
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Lynne,
I’m sorry the news is not as good as you hoped and in line with how you are feeling. I can understand wanting to stick with the treatment, particularly if the progression is not significant. Praying your TMs are behaving.
Ahhh, the garden and the deer! It’s a constant battle for me in my front yard. Things they are not supposed to eat they yard out with abandon. My hostas, also looking healthy and strong, are all tucked away in the back where I am able to keep the vermin out. (I do have moments of anxiety that one will sneak past the guard and do untold damage.) I planted up a couple of pots with lavender and an under planting of campanula, right next to a step where campanula has spread naturally. First night they mowed down the new plants! Argh… I’ve been laughing at my pots, all nicely planted up with annuals with ugly deer netting around them. 🤨 But if I don’t, they pull out all the new plants even if they don’t eat them.
Sounds like you are a bit behind us. We’re part way through rhododendron season and they have been spectacular this year thanks to a cool spring. As you can tell, the garden is coming along nicely and filling me with joy. Not so much time in the relaxation zone yet but that will come. Love hearing of your garden Lynne. Enjoy!
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My TM results were posted to the patient portal last night. They are down another 100 points. WOOHOO! They have dropped from over 1400 to 784 since I began Ixempra in February. While that is still high for CA27.29., it is a significant change. I am going to celebrate because every little thing counts.
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woo hoo! Doing the happy dance with you Lynne!
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Thank you for the dance Sadiesservant.
Today was blood tests, Visit with PA, and infusion day. It was, as usual, uneventful. I am currently a boring patient, but I am enjoying that role. My blood test results were really good (for me). My hemoglobin was 11, the highest it has been since I was diagnosed with mbc.
Oh speaking of diagnosed, i passed the seven year anniversary of that mbc diagnosis. I have to be honest, I didn’t think I would make it this far. I can’t say that I have had the easiest time - so many lines of treatment, so many reports of progression - but I am still here! Unfortunately, I have lost many friends here. Some only lived for 1 1/2 year or 2 years after diagnosis. Cancer is a cruel and unpredictable disease. There are some people who have good results,@ of course. I read the threads and see people who are on their first line of treatment after 5 years. It just amazes me. Everyone is so different.
So I am continuing with Ixempra. So far so good. It has been much kinder to me than it has been to others who have reported their experiences.
Enjoy your weekend. Hugs and prayers from, Lynne
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50sgirl, I’m not on Ixempra either, but I just found this thread and read all your updates. I’m liking seeing the tumor markers come down and that this hasn’t been too hard on you. I hope you continue with great progress.
I’ll add this topic to my favorites so I don’t miss anything.
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50sgirl— reiterating KBL’s comments to you
I am not on this treatment but read all your posts yesterday to gather as much info as possible.
Thank you for sharing
Hope TMs keep dropping for you.
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Well, I submitted a posting a little while ago, but is disappeared. It was nothing big or important any way,so I will just add a blurb here.
My TMs went up 130 points last cycle. I received the results several days ago. I am hoping it is a temporary increase. All my other blood tests were good, so I am remaining calm. I did have achy legs for a couple of days after chemo. It was nothing major. I will trade two days of achy legs for three weeks of stability anytime.
I will have blood tests, see MO, and have chemo again on July 5. I will post an update after that.
Thank you all for your support. I hope you have a good weekend.
Hugs and prayers from, Lynne
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Lynne—in your pocket while waiting to see what happens to TM next Test.
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Lynne,
So glad you have been continuing to feel well. I haven’t been on this thread for a while and was so happy to read about your garden. I’m getting cataract surgery this month also. Oh my, the lens choices! I have obsessed to no end! Hope your first surgery has gone well. Thanks for continuing to post about Ixempra. I hope you can remain on it. Best wishes!
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My white count and neutrophils were low today, so I couldn’t have infusion. We will try again next week. This is the first time I have had to postpone Ixempra treatment, and the first time in quite a while that my counts dropped that low. Oh well. It freed up 5 hours.
Moissy, I am sure you will make the right decision about lenses. I went back and forth before I made up my mind. My first surgery went well. It was quick and painless. I will have the other eye done next week.
I should get results of tumor markers in a few days. Hopefully, they will bounce back.
Enjoy your day.
Hugs and prayers from, Lynne
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I received the results of tumor markers yesterday. CA27.29 is up another 70 points. I am not panicking. I think my MO will probably want me to have scans next month, just to check on things. In the meantime, I will try again to have treatment on Monday. I think blood tests will be back to allowable levels.
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Lynne -I hope your blood counts came up enough for you to have treatment this week. Wishing you well with your second eye surgery.
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I retuned to the cancer center on Monday. My blood tests results had improved, and I was able to have treatment.
Tuesday I had cataract surgery on my second eye. All went well. I got home and slept all afternoon and all night. Ixempra has taken away my energy, but I can’t believe how much it knocked me out this time.
Other than the exhaustion, I have had the usual two days of minor leg aches. I also had one day of shoulder soreness. I had that last time, too. Heating pad solved that issue.
Otherwise, all is well. TMs were up 30 points in just 6 days - not major, but grrrr.
Btw, It is good to see normally again.
We are having our annual family get together on Saturday. There will be 20 of us here. I am so excited to have everyone together, and the amazing fact that treatments such as Ixempra have allowed me to still be here is not lost on me. I will enjoy every minute
Hugs and prayers from, Lynne
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I think I might have discovered one reason that Ixempra is not often given. I received the EOB statements from my Medicare Supplement plan today. My cancer center bills $35,000 for each treatment of Ixempra. Of course, Medicare approves a lower rate. I can understand why insurers might be reluctant to cover $35,000 every three weeks. If I were uninsured, there is no way I could afford it since it would add up to around $600,000 in a year.Luckily, Medicare and Medicare Supp pay the full-Medicare approved amount, so I pay nothing.
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Whoa! That may explain it. I couldn’t understand why it seems to be no longer offered here. It may be a short conversation with my MO! Glad you have access and it’s working.
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The 35,000 includes the administration of the IV, etc, but it’s still very pricey
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Hello to whoever is reading this. I had blood tests, appointment with MO, and infusion today. All went well. My blood counts were acceptable. It will take a few days to get the results of CA27.29. I am scheduled to have scans next week on August 10. My MO is concerned because my TMs have risen consistently during the past several cycles. They usually are indicative of progression. I am hoping that this time they are not. I would like to stay of Ixempra for a while longer. We shall see what the scans show. I feel really good, and that makes me happy.
It has been hot lately, but not nearly as hot has other parts of the country, just 80s and some 90s. We really need rain. My garden is suffering. In addition to the lack of rain and the hot temps, the deer have chomped off the leaves of my hostas and the flowers on other plants such as garden phlox. I think there are chubby deer roaming the woods near my house.
Enjoy your day.
Hugs and prayers from, Lynne0 -
So good to hear you are still feeling well Lynne and let’s hope your TMs are playing games with you. 😁
I had to chuckle at your comment about the deer. It’s like we are neighbours! Except I have my hostas (also known as deer candy) strategically located behind fencing. I have some Phlox at the front and have not seen a bloom for years. Two weeks ago I had a four point buck take up residence for the day, then the next day it was a doe, then two days later a fawn was left to hide out. I find it hard to shoo them away despite the carnage….
Not sure if this will show up but the picture is another buck who decided to hang out a couple of days ago. He had been eating the plants near the back door when my mom arrived home in her ca4, only feet away from him. Totally unconcerned, just moved to a more sheltered location. He was there for hours until I thought he was gone and investigated to see what he had eaten/destroyed. Apparently he had simply moved further into my garden to avoid the heat. I don’t know who was more surprised. Ha! He launched himself out of my garden in a hurry as apparently a foot away was too close! LOL
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My tumor markers went up 240 points this cycle. Not good! I am scheduled to have scans in three days, so I’ll see what information they provide. I am still feeling good.
Sadiesservant, it sounds like the deer have discovered their ideal location in your yard. At least you get to see the wildlife even if your garden is not looking as you had hoped.
Have a good weekend
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I had scans yesterday, and the results were posted to the patient portal soon after I arrived home. I was pleasantly surprised to read that the Mets in my liver, spleen, and bones are relatively stable. YAY! Enlarged Retroperitonial nodes were mentioned as were enlarged notes in the left and right sides of my groin. The report said they they are unchanged. I am not concerned about them, but I found it interesting they they were mentioned as unchanged since they have never been cited in any previous reports. It makes me wonder why they don’t include everything. Is there anything else I don’t know about? Haha.
My next appointment at the cancer center is in about a week and a half. I will talk to MO then. I think it is safe to say I will be continuing with Ixempra. I am glad since I still feel good.
Hugs and prayers from, Lynne
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Great news Lynne! That’s fabulous.
WRT the scan, I always joke that they pay attention to the liver and then I imagine them rolling their eyes and saying bones stable. I have soooo many bone mets that it would take several pages to report them all. I’ve been caught by surprise several times with newly described bone lesions that are mentioned sort of off the cuff. It seems to depend on the type of scan and who is reviewing in terms of what catches their eye. And they have missed progression that caused me issues a couple of times. Thankfully my MO is quick to act if I report troubling symptoms. 😊.
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Lynne - So glad to hear your great news! Enjoy your garden
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Lynne— congrats on Scan results!!!
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I started cycle 10 of Ixempra today. I am still feeling good. I do have a slight increase in neuropathy . I have had it in my feet, ankles and lower legs for years from all the chemos I have cycled through. Until recently, only one of my fingers was affected. Now I am experiencing numbness in my all fingertips. It does impact much other than my ability to maneuver the clasps on necklaces. My MO wants to keep a close eye on it. If it worsens, he will reduce the dose of Ixempra. Other than the numbness in my fingertips, the only other new development is headaches. It is listed as a common SE of Ixempra. Tylenol helps but I can’t take Tylenol every day. I will discuss with my MO in three weeks.
Moissy, I saw a PA today rather than my MO. I decided to wait to ask about Enhertu in three weeks when I see my MO. I will stay on Ixempra as long as I can since I feel that a medication that works is hard to find at this point. It looks to my untrained eye that the pathology report points to HER-2 low. My MO will have to confirm that, of course.
Sadiesservant, My MO doesn’t even order nuclear bone scans anymore. The results for the last several I did were “SuperScan.” There is nothing super about it. It shows that there are so many bone Mets taking up the contrast/dye, that there isn’t enough left to show up in kidney and bladder, etc. Oddly enough, even though I have bone Mets everywhere, I don’t experience their pain when I am on a treatment that works. When I report here about bone Mets now, it should be taken with a grain of salt since the only results I have are limited to areas seen on CT scans.
Dodgers girl, Thank you for the kind words. My MO classified the results as “stable to slight improvement.” I say WOOHOO to that.
My gardens are disasters. Ixempra has really sapped my energy and limited my stamina, so I haven’t done much work on the garden. That combined with drought condition and a few heat waves add up to very unfavorable conditions for my beautiful flowers. Of course, the deer took full advantage of the situation. I guess my dog was tired of them (the deer) today. She usually just sits and watches them from a distance. Today she chased them out of the yard. I am still living my life but things have changed since COVID. I am cautious. My dh and I drove to the beach last week. We had lunch in a restaurant with outdoor seating overlooking the ocean, then sat on a bench overlooking a light house, the rocks, and the wide open sea, then after driving though the village, we stopped for ICE CREAM! It was so good. Two days later we decided to venture out from home again and we drove 2 hours north to our vacation home in the mountains. We spent three days there. It was so peaceful. I like the house, but I think we will put it on the market this fall. It is underutilized now that I no longer ski and my kids and grandchildren rarely have time to go. It just costs u too much money to maintain now.
Well, I have written way to much here. I apologize. I hope you have a wonderful day. I appreciate your support.
Hugs and prayers from, Lynne
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TMs (CA27.29) increased another 259 points this cycle. I am disappointed, but I won’t dwell on it since the scans were good.
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I had treatment today, but my dose has been reduced by 20%. Neuropathy has gotten slightly worse. I have developed pain in my toes and soles of my feet. My fingertips are numb, and that is new. They think that the dose reduction will help. Maybe it will get better, maybe it just won't get worse. Either is acceptable to me.
I have been experiencing daily headaches for several weeks, just on the right side around my eye. MO wants to check it out to make sure it's not brain Mets so I now have a brain MRI scheduled for September 22, just 10 days from now. Hopefully, it is nothing and the headaches will just go away. Surprisingly, I am not nervous about it. Being nervous won't change anything, so I will wait for MRI and results.
Otherwise, everything is good including blood tests. I got my new COVID booster yesterday. I have not experienced any SEs from the shot I was surprised how quickly appointments are filling up. I thought that people had become apathetic to the entire covid “thing"
I hope you all have a good week.
Hugs and prayers from, Lynne
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I had the MRI yesterday. The results were posted to the patient portal last night. Several areas were reported as suspicious for metastatic disease. The sizes of the lesions are small, between 3 mm and 8 mm. There is also nodular thickening of the dura. Lots of comments, but the tem used are new to me, so I feel a bit lost as I look things up and try to figure out what is going on. Of course, my MO is on vacation. Just my luck! I will stay calm and carry on until he returns. I could call to see if someone else can help me, but I really want to discuss this with the MO who has been treating me since the beginning more than 7 years ago. I am doing okay in the meantime. I am surprising myself.
Have a good weekend.
Hugs and prayers from, Lynne
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Lynne,
I’m so sorry your news and that your MO is away. I know exactly what you mean about preferring to speak to your regular doctor. We develop an understanding and ability to communicate with them in a way that is difficult with someone completely new. Mine is back from vacation on Monday so, like you, I have been waiting (perhaps not totally patiently 😊 ).
I hope these new suspicious areas turn out to be nothing. Sending a big virtual hug and holding you close while you wait.
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