Ibrance (Palbociclib)
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HLB - vitamin D must be monitored if you are taking supplementation. keep checking that box!
Cure-ious - I will not get scanned here but I can try to get scanned as soon as I get back. I am inclined to do it and I will try to convince my oncologists. She alternately finds me amusing and annoying. Hope it is a day she finds me amusing.
That said, I asked the Dr. here when to get scanned and he said that with immunotherapy that cannot be answered. He said he sees three types of responses.
- People who respond immediately
- People who get significantly worse than have a complete response. He got very animated on this topic, talking about many famous examples. Obviously a very scary event for both oncologist and patient. But that is the flare reaction ... where what you are seeing in the scan is inflammation from dying cancer, not active cancer. Impossible to distinguish the two.
- People who remain stable for 6-9 months and then suddenly you see the response.
Of course this makes it tricky to monitor the situation and evaluate what caused what, because is strongly recommending I remain on some standard of care treatment as long as it doesn't impact the immune system the way Ibrance does. Over the next few months, he is more concerned about immune suppression than about the possible synergistic effects you and I have been reading about because the immune response can take a while to develop. During this period I need to avoid things that impair immune function.
I am sure there is a 4th option ... no response. But I was kind of glad its not on his list so I did not pull that string. I have a consultation with him every treatment and there a total of 9, so it's been a good conversation.
>Z<
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Happy Sunday!
Thanks for all the input about X-Geva.
Janet...The only prescription meds I take are Crestor, Ibrance/Letrozole. When I had my first Zometa infusion my creatinine level increased to the point I had to have daily infusions of fluids. I guess that's what determined my not being able to tolerate it -- thus, hoping the X-Geva will work. My onco said there are fewer side effects with X-Geva. I have Medicare and Anthem as my secondary insurance, so hoping it will be covered.
Have a super Sunday!
Hope
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Zarovka, do they recommend any immune support supplements like maitake or PSK?
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Doc says I need to stay at least one more night for the cellulitis. It is getting better, though. Maybe they will try me on oral antibiotics tomorrow then let me go home to my kitty.
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Grannax I'm glad to hear you are at hospital. I had a case of cellulitis that turned to sepsis on my first go around of AC. It was at port. Nurse wouldn't use the port because she didn't like the way it looked. Mo agreed.I had AC through a vein. 2 weeks later cellulitis at port. NO fever. Lots of discussion between arrogant doc who put the port in and the mo. Finally he removed it after 2 other doctors intervened and I called my primary. Yes this stuff happens
Port removed and a new one put in, after thoracic surgeon repaired the hole. After 2 more "infections" in hospital a bone marrow biopsy showed I have bone marrow issue too. I never have a fever. My normal temp is 96.6. 99 is a fever for me. End of AC after 3 That was 12 years ago.
All this to say. Follow your gut when you have an infection or don't feel well.You know your body best . I knew I was ill. I had excruciating pain in the area. Steroids don't play well with infections either.
Hope you are home with kitty soon.
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Maire, I am glad for your post. I had cellulitis a few months ago in my arm but with no fever, but I knew things were not right. They checked for a blood clot but all was fine there. I was put on an antibiotic and eventually it resolved. I also run a low temp so I pay attention to any rise. This site is so helpful for information like this. Sometimes I feel so isolated and alone medically, but you all bring me company and hope. I have to explain my treatment to so many people who are only familiar with the surgery treatment. I try to get this information out hoping it may benefit someone.
I am planning a plane trip at the end of the week to visit my sons and grandsons. Falls during the last week of my Ibrance cycle and my off week which are the two worse for me, but I will press on. I have never taken even a day off from my regimen, and since I have good results, I am hesitant to make any change, even a brief one, until I need to. My MO has never suggested any change since I am doing well. We all make so many medical decisions every day...thank you for the support.
C
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Intolight, I hope your trip is just wonderful. I pray that your body behaves better just because of the change of scenery!
Grannax, you make us so jealous because we know you are eating that delicious hospital food! Mmmm, that tiny cup of warm Jello with plastic-wrapped crackers! I'm so glad you're getting better.
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grannax, only replying now as I was away for the weekend. When i had mine I rang my oncology helpline at the hospital and they want to know what my temperature was. I didn't have a fever but mine was sitting low. They told me to come in immediately. Apparently having a low temperature is bad too. It can also mean infection if you have a compromised immune system. I had never heard this. They gave me iv antibiotics and wanted to nip it in the bud. It did clear quickly thankfully as it did look like I had been in a punch up. My poor husband was paranoid that people thought he did it!!! I had no pain either but you are definitely in the right place to get sorted. Rest up and hopefully you will be home soon x
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Grannax...So happy to hear you are doing better!!
Maire....You are so correct! We do know our own bodies.
IntoLight...I would do the same as you...try not to go off your regimen. I can't really say I have any worse weeks with the Ibrance/Letrozole. I think the first round, I felt pretty yucky on my "off" week and surprised because I that that would be a "good" week. Now, I don't notice much difference week to week.
PatG...You are too funny! Hospital food is reason enough to want to get out of there as quick as possible.
Lillymillie...I didn't realize a lower temp could mean something bad. When you say "low"...how low are you meaning?
Hope everyone has had a good day. I'm thinking about Faith...I guess she is enjoying Italy at this time?
Hope
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I have copied info about temperature below. My temperature was 35 degrees Celsius which is abnormal. I had never heard this and neither had any of my friends!
"The ideal core temperature is considered to be around 98.6° Degree Fahrenheit or 37° degree Celsius. This temperature is however, the average body temperature and the overall normal temperature varies from a minimum of 97.7° Fahrenheit (36.5° Celsius) to a maximum of almost 99.5° Fahrenheit (37.5° Celsius). Any temperature above or below this range is abnormal.
A low body temperature creates a happy home for viruses and chronic infections, and is a sign of degeneration and gradual cellular death. The problem with a low core temperature is that no effective immune response can be mounted therefore no fever is generated and infections go undetected. The sickest person is one who gets the same infections but never miss a day of work because there is no response by their immunes system, so they have a false sense of wellness as healthier individuals go through healthy fevers and immune responses that may cause them to miss work. "
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Thanks everyone for your stories about cellulitis with no fever. I never knew. I was beginning to doubt myself about being here but now I'm not.
Pat. Your description of hospital food is so true. You made me LOL.
My neighbor will take care of my kitty, he'll miss me but he'll be OK.🐈
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My temperature hovers around 97.7 so I am at the minimum, but barely. It was low even when I was younger so I have not worried about it too much.
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Thanks Nkb and Joyneri. That's what I thought. I've been using it under the name Denosumab.
Nonahope have you heard any more about your anaemia?
Thanks also to everyone who posted about body temperature because it made me realise I've been complacent. I had no idea that a low temperature could be dangerous so now I know why my trial nurse emphasises the need to take my temperature every day. I just thought I'd know if I have a fever and would then take my temperature to check. Now I know differently I'll be more conscientious. I'm normally diligent about what I'm told to do but I overlooked that.
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Hi Grannax. Your kitty misses you. I am in Japan. My family sends me pictures of my kitty. She sleeps on my bed even though I am gone. Either she misses me or she's thinking "Finally I get my bed to myself." Not sure.
>Z<
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Good morning...
Lillymillie...Thanks for that info! My temp is seldom in the 97 degree range; usually 98.whatever -- so, I guess that's good. I don't take my temp at home unless I think I might have a fever.
Leapfrog...I haven't heard anything about my labs for anemia. They were drawn on Friday and had to be sent out so I don't expect to hear anything for a couple of days. Probably won't be evaluated until today. I just wonder what they check for with 5 vials???
Z...What a cute picture. I'm sure he misses you a lot, but being a cat I know he's loving having that bed to himself. Hope all is going well in Japan. How long will you be there?
Hope everyone has a fantastic week!
Hope
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Z. Your kitty is beautiful. I'm sure mine is curled up in my bed, too. I wish I knew how to post a pic here. He's Lynx Point Siamese. ( Tabby mom and Siamese dad). Stunning blue eyes.
I got a good night of sleep (unlike the night before) and feel better. Doc has not been in yet. After she comes in, I'll know whether I get to spend another night in my expensive hotel. Ha
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Lillymille- where is the information about temps from? I have always ran a low temp.
Thanks
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oh sorry singlemom I didn't explain at the start. Grannax had developed cellulitis after a bite and was thinking if she had no temp she was probably fine. I was just highlighting that a low temp is sometimes bad is this scenario as it happened to Me!
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had my scan results this evening. Good and bad. All Stable in bones. A 6mm diffuse change in liver. They dont know what it is. Onc said it could be effects of the treatment??? I need to get another contrast mri tomorrow afternoon. They could tell from ct or not I had last week so want to do a contrast dye. Pretty worried. I feel good and have had no symptoms but think Z was the same. Feeling quite low after that.
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Z if I leave my clothes on my bed the cats always lay on them, so make sure my worn jammies are there when I go away. When I come home they run to the post and have a scratch party. That's how I can tell they're glad I'm home. Or glad that it's time to eat. The last time my dad stoped in they did the scratch party. He stops in a lot when I'm at work so they love him too now.
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Lillymillie, good luck with the MRI.
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Lillymillie...You will be in my thoughts and prayers for good results from the MRI.
Hope
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Lillymillie, I pray that your liver change turns out to be what mine was.....FAT! My oncologist called it "one-too-many-Whoppers"! I know you're anxious and I'm sorry.
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I am home. My cat is happy and so am I.
But, my doc says I had cellulitis and a skin allergy. The infection seems to be gone but the rash on my face is not. Very confusing to me. She said the rash may take weeks to clear up.. I'll write more tomorrow.
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I am home. My cat is happy and so am I.
But, my doc says I had cellulitis and a skin allergy. The infection seems to be gone but the rash on my face is not. Very confusing to me. She said the rash may take weeks to clear up.. I'll write more tomorrow.
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Gla your home Grannax. Have a good night.
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Nonahope 5 vials is a lot! When I go for my five weekly trial assessment they take 3 vials and that's for full blood count, CA15.3 and um...something else!
Grannax, I'm glad you're out of hospital. Look after yourself.
Lillymillie, thinking of you and holding you in my heart. I hope and pray your MRI reveals your liver is clear. Sending hugs
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Nonahope- the different vials have different preservatives or other things inside them for certain tests.(some have purple tops, red tops, blue tops, multi-colored tops-for different types of tests) Each vial doesn't have much blood in it, but, the vial used for the blood count, ANC etc, is different than the one for the Tumor markers etc. Sometimes they draw an extra one in case the doctor sees a result and wants to add another test with leftover blood etc. Still- I prefer to give up as little of the red stuff as possible. Good luck with all your tests!
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Good morning...
Grannax....So happy you are home and I'm sure your cat is by your side at all times! Hope the rash heals quickly.
I did notice the vials had different color tops. The vials were not big -- smaller than my usual monthly blood draw. Maybe, I'll hear something today...hopefully, nothing serious. Maybe, I need to start eating liver and onions??!!...LOL I love liver and onions but gave them up to help with cholesterol. I did buy some chicken livers at the grocery this week...Crestor may have to work extra hard this week.
Have a great day!
Hope
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Lillymillie- good luck on the MRI. I hope it turns out to be nothing of serious concern!
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