Ibrance (Palbociclib)
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Fatigue for me significantly improved when I dropped down to 75mg. Energy wise I’m doing well!
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I hope this is an okay place to ask this question - for those of us who also have blood pressure or cholestrol or any other ailment that is not metastic breast cancer, and take Ibrance, do you take Crestor? I read that some statins interact negatively with Ibrance, though I asked a pharmacist and he assured me my Crestor won't interact, yet online (arghhh) it does mention neutropenia etc.,. Please let me know if you have any knowlege or use both yourself. Thank you in advance, I appreciate your help...
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Janky- Interesting question. There have been a couple of fatalities linked to taking Ibrance and statins; basically Ibrance inhibits the Cyp3A4 enzyme, which is used to metabolize (break down) statins. Concurrent use of both meds could in principle lead to much higher levels of statins in the bloodstream, and generalized muscle pain/weakness. Perhaps it would be good to take statins and Ibrance at 12h intervals?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC55118...
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Cure-ious - Thank you for posting this and Janky, thank you for asking. I just read the article and I also take Lipitor (same dose as the woman in the case study). One of the things that prompted my questions about fatigue is that I have felt weak kneed a couple of times in the past 2 months. It has been at least a week since this last happened but I will be asking my doctor tomorrow. The authors note that’s ATL amd ASL should be monitored and mine have always been normal.....
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Janky, Cure-ious and Lauren, I was very interested in your posts on statins. I take simvastatin and even know there could be an issue. My onc onc and primary care physician know that I am takin both. My annual physical is due pretty soon so I’ll be sure to cover this in our discussion. I’ve always taken my Ibance in the morning and take the statin at night before bedtime.
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Wow this thread has been busy. Lots to catch up on. Firstly, I'll get my good news out of the way. My scan results show that my bone disease is still stable and my organs are still clear so, eighteen months out, I'm beginning to feel confident. I have a new MO, who is actually the doctor managing the Ibrance/Letrozole trial I'm on and he's a lot more positive than my previous one. He told me he has had a lot of patients on hormonal treatment who have lived out their natural life span with breast cancer in their bones and that he has one patient who has been on Ibrance for four years. This is in Australia, where Ibrance was only approved for use last May. Previously patients had to go overseas every three months for their supply.
Next, for those who are concerned about tumour markers, you might like to know this. My oncologist explained why my tumour markers bounce up and down from 450 to 580 each month. He said it depends on which vein is used. If the phlebotomist uses a larger vein or takes up the blood from a larger vessel, there will be more tumour cells in the sample, while, if the vessel the blood is taken from is a smaller one, the opposite happens so that's why our tumour markers can be erratic. It made a lot of sense to me and I think it's another reason not to be too concerned with changes in tumour markers unless our oncologist is concerned.
About hair, I'm coming up to my 15th cycle and I lost about half of my volume of hair. My hair is baby fine but I had a lot of it so it doesn't look too bad except it's hard to do anything with. It's naturally wavy/curly but there isn't enough volume at the top for it to wave so it sits flat on my head now and just curls on the ends but I'm grateful to have that. I've started using Regaine, which is for male pattern baldness because that's what Ibrance causes. It definitely has improved my regrowth. I can feel little follicles all over my scalp where new hair is starting. I have a lot less loss now; some of that is because I think the hair loss settles down after about a year but a lot of it is because Regaine is replacing the lost hair. Whether I keep that new hair is something I'll find out.
About Xgeva...I've had it every month for eighteen months. I have it in the belly, just below the navel. It is painful but I don't have any side effects whatsoever except that I know it's definitely made my bones stronger and is contributing to controlling the cancer cells and bringing about some healing. I'll take Jaycee's advice from now on because I didn't know about warming it. I would definitely not give up having it though. It was my saving grace in the early days when I had stress fractures in all of my ribs and in three places in my spine. Each injection made a difference I could feel.
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Congratulations, Leapfrog!! Celebrate, champagne, cake, all that good stuff!!
Just a note on the statins, the paper also notes no problems occurred at all in all of the clinical trials, and so with everyone taking these meds, they only have two cases, but its worth noting, in case you have this all-over muscle pain develop, feel as if you have bruises everywhere you touch but without any actual bruising. Seems that it's a really rare problem to have...
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Janky, I have no clue about Crestor, but is it your specialty pharmacist you asked? They're supposed to be the experts in what interferes with Ibrance.
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Leapfrog, Congratulations!!! Thank you for sharing with us, I am so happy for you. About Rogaine I was wandering why was only for men. I may try it too.
I wish you many more scans like this one! Love.
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I have been catching up on the posts and wanted to check in.
I will be changing MO's---mine is leaving our area. The good ones always seem to leave. He was in an office with 2 other MO's so I am trying to decide which one to go to now. I asked my MO which he thought would be a good fit for me, but he wouldn't say. I guess he didn't want to voice his opinion on his colleagues. I am asking people in our community--my church, work, etc if they have had any experience with the other 2 MO's. Changing docs is always a little scary. I want to continue monthly TM's and 3 month CT's and continue on Ibrance/Letrozole/Lupron regimen. But who knows what the new MO will agree to and their thoughts on my situation.
My last TM's showed decrease of CA 27.29 but increase in CA 15-3. My MO just mumbled " this is confusing" as he looked at the results on his computer screen in the exam room. ?????? They say docs "practice" medicine" and I tend to agree---- and he is one of the good docs.
As for the fatigue issue----I am on 75mg dose. I cannot say what cycle I am on as my Ibrance journey has been different. I started on 125mg but had to stop due to low ANC (400), then went to 75mg and still had low ANC counts. Then we changed the dosing schedule of the 75mg to on 5 days/off 2 days. Then recently went to 75mg on 21/ off 7. My fatigue is always there to some degree. If I sit down and watch TV I usually doze off and I am ready for bed by 9 pm. Some nights I want to go to bed by 7pm but force myself to stay awake until 9. I work a desk job 12 hour shifts/ 3 days a week. A couple of weeks ago I called in to work telling them I couldn't make it that day. The fatigue was terrible. When I came back to work my supervisor asked how I was feeling. I explained with the diagnosis and the meds fatigue is a battle. She said " Well, we all need a day off sometime." What!!!??? People that are not dealing with cancer just do not understand. My "day off" was spent sleeping and was not what I would have chosen.
Lastly, I went to my local Social Security office just to talk to them about disability. Just to get info. The woman told me as long as I can hold down a job and my paycheck is $1,100 or more a month I don't qualify for disability. I explained I can no longer work in the field of my career due to restrictions with the disease ( low white counts and not the heavy lifting I could do before) and that I had to take a lower paying position. She said that does not factor into qualifying for disability --career loss. She told me if/when I cannot continue to work a full time job(must be out of work for 12 months) or my pay drops to below their approved level I could apply for coverage. But then there is a 7 month wait. I am single and sole income for my household. I did tell her of my Stage 4 diagnosis.
For anyone out there who does receive disability, does this sound correct? And be thankful you qualified. Sounds like I should not count on disability payments being in my future. And I pray I can continue working.
Sorry for such a long post. I know I can talk to you guys and you totally understand.
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I take 20 mg Lipitor daily for my high cholesterol, and my onc told my primary to keep an eye on my levels, as the Ibrance increases the amount of the statin in the blood. I know the 20mg is considered the average dose, and I also know people on 80mg/day, so I'm not worried as long as I have no joint issues. My primary tests my cholesterol every 3 months, and it's been consistently "perfect" since I've been on the Lipitor.
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I too am on Lipitor. The speciality pharmacist warned me about increased muscle cramping and also suggested taking the drugs 12 hours apart. I have no issues and can see increased strength as I work out at the gym, eg I can do more reps of specific exercises and use higher weights. I was taken off Lipitor when my first liver biopsy diagnosed a drug induced hepatitis and found no cancer cells. After the bone biopsy was positive and my blood lipids starting going back up, I went back on lipitor. I have a lousy family history for both heart disease and breast cancer. Its important to chose your ancestors wisely.
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Candy. I am on SSDI due to Stage IV dx. I am also retired. I work one day a month at a winery to keep income very minimal. The job gives me a purpose and social outlet. I think you need to make an appt with your local Soc Sec. Usually it is a phone interview first.
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SandiBeach57-
I am not retired---47 years old. I called the Social Security Office and spoke to a representative. She said I didn't qualify. I guess end of story as far as they are concerned. Does this sound correct???
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Candy,
Unfortunately what they are saying does sound right. If you have savings, you should stop working and apply immediately for SS Disability. As Stage 4 you would automatically qualify. There is a five month waiting period, and then your first payment is about 6 weeks after that. Do you have any Disability Insurance from your current job? Perhaps Short term disability or paid medical leave could help bridge the gap until the Social Security kicks in.
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Candy, disability is so confusing and I don't claim to be an expert by any means, but I have managed to navigate it all. I have a work order from my MO that says I am unable to work--this is crucial. So I think what you are told is correct. As long as you are able to work you don't qualify. No one seems to care how difficult it is to get dressed in the morning to even get to work! I am fortunate to live in California that also has an excellent state disability plan, and I started receiving disability one week after quitting. Again, a work note from my MO was crucial. I don't know what insurance you have, but many have a specialist office that helps patients with disability. This might be another resource for you. And yes, social security disability did not kick in until I was off one year, but the CA disability filled in that year. It is only 60% of last year pay so it is not great, but something.
Also, make sure you clarify that you are seeking disability and not retirement social security. They are not the same.
Sorry you have to navigate this all alone.
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hi all - just following up in the statin/Ibrance interaction. I spoke to the pharmacist at my specialty pharmacy and while this isn’t well documented, did recommend that I talk to my doctor and potentially switch to one of the stations that doesn’t ‘use the same enzymes that Ibrance inhibits’ (that’s my non-medical explanation for the interaction). She gave me 3 options for that and Crestor was one of the ones to consider switching to.... the 3 were:
Lescol
Pravachol
Crestor
I’ll let you all know what my doctor says Monday.
Laure
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Candy,
I understand what you are going through. I am single and 48. I learned that any of us can qualify for our social security benefits early with a stage 4 breast cancer diagnosis as long as we say that we can no longer work. It's under the compassionate allowance. https://www.ssa.gov/compassionateallowances/ I called them and they said that the day I could no longer work, I could apply for the benefits.
Chicagoan is correct that the waiting period is 5 full months, so expect 6 months before the first check and you cannot work during that time. You may be able to qualify for a supplemental social security income while you wait but it's not much. Unless you have savings, can get creative with financial assistance or have disability work benefits, it's a tough situation. My facts may be wrong, but I spent many hours researching it and trying to figure out how I will support myself when I can no longer work full-time.
Let's hope our fatigue doesn't get too bad and we can continue to work.
Hugs ~Kar
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Some thoughts on the discussion of drug interactions between palbo and Lipitor. Neither is a strong inhibitor of cytochrome pathways. Palbo is considered only a weak inhibitor. Also, palbo has a half life of 29 hours, so timing the dosage with another drug doesn't make much sense, as at 12 hours after taking you still have 3/4 of the drug in you, plus almost half of yesterday's dose.
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Thanks to Chicagoan, IntoLight, and KarPC for their posts in response to mine.
Health insurance is another issue. I have health insurance thru my employer so if I have to quit my job there goes the insurance. I hear there is COBRA but I hear that would take up most of my disability check to pay for so what would I live on? So it sounds like I will pretty much have to be destitute to get disability---stop working and receiving an income for 7 months waiting on the first disability check, go thru what savings I have, spend money I don't have on COBRA, and then receive disability check and spend it on insurance-COBRA. Sounds to me like a person could not survive on disability alone. I heard of an employee of our company that worked until 3 weeks before his death----he had some form of cancer. I guess that will be me.
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Thank you Husband 11 for that input....
I got my scan results. Recall I was dx in Feb and had 16 radiation treatments to my single bone met in the rib, plus started Ibrance/Faslodex and Herceptin. Recall also that I was scheduled for a PET to compare to my pre-treatment PET but insurance denied in favor of a Bone scan + CT.
SO good news is there is nothing new in any bones or in any organs. Confusing news - and I sort of expected this - is that rib lit up on both Bone Scan and CT. Radiologist could not distinguish between cancer and inflammation from radiation on either study. I will see my doctor on Monday. Nurse said he will likely order a PET, which insurance always approves after inconclusive studies. Grrrrrrrrrrrr Super annoying but not the end of the world and am very happy nothing new showed up --- especially since the bone scan is more sensitive than the PET for bone mets, so I was a bit worried something I was blissfully unaware of might pop up. SO trust me, I am counting my blessing here.
Anyone have this situation and reach a conclusion from a follow up PET? And how can there still be cancer there after 16 radiation treatments all of these meds? The RO started with 5 treatments, then went to 10 and finally I talked her into 16. My MO said I bullied her (he was joking). I have never had any pain so this treatment was being done to eliminate the cancer because I am ogliometastatic. SO if it is still cancer, I want to surgically remove it.
Also - On the Ibrance dose.... thank you again for all of your support and insight. My husband and I had all day yesterday in scanland to talk this through. We decided that we are going to stick with 125mg and see if it gets better. I can always switch next month if I decide it's not getting better. I'm also going to take steps toward reducing potential depression, which is likely contributing to my fatigue. We made a list of those steps and I always feel better when I have a plan. :-) Now to execute it.
Thank you again and I hope you all have a wonderful weekend!
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If you are stage 4 metastatic breast cancer, you meet what they call a "listing" as far as disability social security benefits are concerned. That means you automatically qualify for disability whether you can work or not. There may be the 6 month waiting period before you get benefits, I am not sure about that.
If on social security disability, you may also be able to be on Medicare health insurance or Medicaid health insurance. I am not sure but you could ask your social security office.
What you were told by that office worker is not correct. Go ahead and apply for benefits or go back to the office and ask to speak to someone else. You could also consult a social security disability attorney. They probably advertise in your area. The attorney would give you the correct advice. You do not need to pay the attorney unless you are successful in getting benefits.
Good luck. I cannot believe that office worker gave you the information that she did. As soon as you told her you were stage 4, she should have known that you automatically qualify because you meet a "listing."
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SS Disability has always been a fouled-up system. You have to be off work for a full six months before you qualify. You can't earn a dime during that time. If you work a day, the clock starts over. A Stage IV diagnosis of breast cancer does qualify you. I would talk with the cancer center social worker about any aid you could get from various foundations around the country. I'd also contact Cancer Support Community for their advice. The American Cancer Society has sporadic help depending on where you live.
http://www.mbcn.org/2017/02/10/ssdi-and-metastatic...
Love from PatG
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My BIL is a radiation oncologist. when I had extensive radiation last year, he warned me that my bones might look worse on the first CT scans afterwards as it is hard to tell cancer from sclerotic bone in the beginning. The PET will show if any spots are active right now. I would not get too worried yet.
Hobbes
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The law firm will only get a one-time payment if you win your case. There is a limit on what they can make. They will not continually be paid from all of your monthly payments.
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I am on a 5 mg. dose of Crestor. I have been breaking it in half and only taking 2.5 mg.
I had my X-Geva injection today. I get it in my arm. Didn't feel much of anything.
Congrats to all those with great reports.
Hope
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Bless you for that insight, Hobbes.
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candy 878 Medicaid in Texas has a special clause for Brest cancer patients who have to stay on medication. If Illinois has it, you could qualify for your medical insurance to be covered by Medicaid. I only know this because I had to be on it for two years till I was old enough for Medicare.
Back in 2010, when my husband died of pancreatic cancer, I was desperate to find some health insurance that wouldn't eat up my SS income check. I think from the social worker at the cancer center I found out about this little known help for BC patients. There are some income requirements.
I know I'm not in your situation and it won't solve everything but if you don't have to do cobra that would help. I didn't have to pay for any meds or ins or doctors. Huge.💞
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Leapfrog: I've been on Xgeva for almost 5 years. Bone scans have improved over the years and I've never had any fractures. I'm not sure if warming the shot is the "secret sauce" to no side effects but I have never had any. I started out on monthly shots but have been on a shot every 12 weeks for quite a time.
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WANDERING...I've never had any side effects from Xgeva either, so I doubt whether warming the ampoule is the reason. It has definitely made a big improvement to my bones, which had a lot of stress fractures when I was diagnosed de novo with bone mets. I'll try warming it to see whether that makes the injection any less painful but to be truthful, the pain isn't unbearable. Thanks for your input.
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