Infections with Ibrance: Hi, My white... - SHARE Metastatic ...

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Infections with Ibrance

Gailcav
Gailcav

Hi, My white blood count is below the range--probably like everyone elses. I'm on my sceond round of 125mg Ibrance and my only side effect so far is fatigue. My husband and I want to travel early next year, possibly a cruse that may include a plane trip. I'm afraid of developing an infection and being in a country or area where medical treatment is sub-standard. What are your thoughts? Have any of you traveled far from home?

70 Replies
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I’ve been on Ibrance an Faslodex for more than a year. I have had no infections in that time. I feel better 15 months in than I did at 2 months. I spent part of August in Ireland and now traveling on the other side in Hawaii. I would not rob my hubby of these trips and they have been a terrific uplift to me. My mobility is much improved from last year. I hope you have the same results. LIVE your life! Enjoy your family and when the opportunity arises...GO!

Thank you for the encouragement! Maybe I'm overreacting.

kearnan
kearnan
in reply to Gailcav

I do not think you are overreacting. I wanted so badly to visit Laos and Cambodia. I realize now that I cannot chance it because I would be so far away and in very rural areas where most don't even speak English so marked off my list for now. Plus, it is important to know how much you are medically covered for.

Gailcav
Gailcav
in reply to kearnan

I never thought about being covered if we go out of The United States. Australia and New Zealand are on my bucket list. I will investigate more.

kearnan
kearnan
in reply to Gailcav

Very important. I reported before I watched a documentary on a man, his wife and two teenage kids went to Bermuda I believe. They were walking on the beach, only about 100 or so feet from their hotel when they were jumped by two men with guns. The son who was 17 got scared and ran and the robbers shot him the back. (He lived). They rushed him to medical clinic that was close by but the father was told they did not accept his insurance. They refused even to give his son any type of painkillers until paid. He put it on his credit card $5,000. Then he was told his son needed an operation and again this time they told him they would need an additional $10,000. Even though he was told his work insurance covered them abroad, this clinic would not accept it and wanted cash and would not do a thing before they got it. So he had to wire home to his family and friends to come up with the extra $10,000. (And this was Bermuda). He said it was a nightmare. I read in a travel magazine that it's best to always purchase the international medical insurance which is globally accepted if one has a condition. This poor man's son was basically being held hostage. They would not do a thing until they had the cash. It was unbelievable and I thought Wow...I have not bought medical insurance in the past, when healthy, and I can only imagine what would have happened if I even fell and broke a leg or something. Better to be prepared and find out exactly, what, if anything, your medical will pay for overseas. I'm sure you will be fine, but I would check anyway. Also, you have some places that take advantage like I think what happened to this man. They saw a US citizen and wanted cash only or credit card. And what are you going to do? No choice.

Timtam56
Timtam56
in reply to kearnan

For Australians..... if I travel to America we do not have a reciprocal health agreement. I just looked on line at our government department health site.

We have agreements with

* Belgium

* Finland

* Italy

* Malta

* the Netherlands

* New Zealand

* Norway

* the Republic of Ireland

* Slovenia

* Sweden

* the United Kingdom.

If you live in Australia

You can get help with costs for medically necessary care when you visit any of those countries.

This includes:

* emergency care

* care for an illness or injury that can’t wait till you get home.

So if I travel outside these countries, I am taking the gamble that I’ll be okay. I don’t know what other countries are like with this agreement. Good to check it out though.

And anyway. I think that I’d rather get sick, or die, and have done what I want. Rather than staying at home cause of fear. When I could get sick just traveling around in my home town Melbourne, Australia.

I would still love love love to go to New York one more time.

And I’m pretty sure I’m going to organise a trip somewhere soon. Probably Italy. And I’ll have to go by myself.

PS. I had to drop down from 125 to 100. After a year. Only because of the counts. Always too low each cycle. Doing fine now. Still tired all the time. But much better than before I started.

Gailcav
Gailcav
in reply to kearnan

I've heard similar stories about Mexico.

kearnan
kearnan
in reply to Gailcav

I live in Brooklyn, NY and have worked in New York City my whole life before the diagnosis. How long ago did you come for a visit. A beautiful time to come is around Christmas time (although it can be cold), the City is beautiful then. Or Fall, in Central Park and walk around and see the foliage.

I would get a note from your onco in case say you lose your meds. I am sure in NY a hospital would be willing to write you an rx if you had a note from your onco. But if that is where you want to travel, New York would be a safe place. I mean if you should get ill, they would treat you and not say cash up front. I think the USA would be safe for you as opposed to my wishing to go to a third world country where I would not feel comfortable with the level of care OR if they would even treat me without cash up front.

I am on NY Medicare now and soon to also get Medicaid as my secondary insurance. IT DOES NOT COVER ME OUT OF THE COUNTRY. So if I choose to go to a third world country, I would seek some kind of plan and pay extra although sometimes it won't be easy with stage iv. For New York, I would say come and enjoy.

kearnan
kearnan
in reply to Gailcav

A lot of corruption there. Poor John Travolta and his family who were at their retreat in the Bahamas where their 16 old son (who had a condition) apparently had a seizure in the bathroom and hit his head hard on the tiled floor and died. Then there were like 4 people from the Bahamas that work at the hotel or were part of the medical team. They had taken photos of his dead son and tried to blackmail them for money otherwise they were going to release photos of his son dead on the floor. They did not pay (Good for them) and the people were arrested but not put in jail. Sleazy thing to do to a family who unexpectedly lost their 16 year old son.

Hidden
Hidden

When I was on 125 mg, my counts were so low, I had to stay off for three weeks. My doctor dropped me down to 75 milligrams, and although my counts are below normal, they are above what’s needed to stay on them, and I was able to continue the cycle twice now with no break. If your counts are too low, ask about dropping the strength. It may help. I was also much more fatigued on the 125 than I am on the 75. Maybe if you drop milligrams, your counts will come up enough not to have to worry about it.

Gailcav
Gailcav
in reply to Hidden

At this time, even though they are below the range, they don't seem concerned. I go back on Wednesday for another blood test.

kearnan
kearnan
in reply to Gailcav

Curious to know how you felt on your week off. I was only on for three cycles. It was my first time being treated and all I was told with Ibrance was that food may taste different. I started feeling fatigued in 3rd week (had never had any chemo or medication this toxic) and then my week off came, and basically I could not get out of bed for the entire 7 days. Same thing second cycle. My onco took me off after third cycle. I am now on Verzenio at the lowest dose of 50 mgs. two times per day and compared to the Ibrance I love it. The off week was horrible for me but its interested when I read that for some women, they feel the same on their off week as they do on the Ibrance.

Gailcav
Gailcav
in reply to kearnan

I am doing well except for the fatigue, and I think it's more depression than fatigue. I don't need to nap, but I don't want to do anything and there is so much I need to do! I felt good on my week off, but I was at a family reunion with lots of family, good conversation and sightseeing. I did not share with them my diagnosis. I have lost 25 lbs by not eating sugar, red meat and I've cut way back on my carbs. I am also seeing a Nutritional Oncologist and I am taking supplements. I hope your new medication helps.

kearnan
kearnan
in reply to Gailcav

See you felt good on your week off, I felt scary sick like nothing I felt before. I had to take naps almost every day during third week. I remember on my week off I looked at my pills and wanted to take them anyway just to stop from feeling sick and I felt like a drug addict thinking if I can start taking these now, I will stop feeling so sick. The ibrance was not for me. Much better with Verzenio. Although I know most women are doing well on the Ibrance. Fatigue on Ibrance is a big issue for many women. On my week off, I barely could muster the energy to take a shower.

Gailcav
Gailcav
in reply to kearnan

I'm glad Verzenio is working for you!

Hidden
Hidden
in reply to Gailcav

They usually only make you take a break when neutrophils drop below 1.0. I hope your test comes back with better results on Wednesday.

On Ibrance 4 years. I've been to Europe every year and the Caribbean a few times. I work in a school. I don't get sick as much as others do! Go. Wipe down the airplane tray and bathroom surfaces. Take reasonable precautions and enjoy.

Do you know what your WBC and neutrophils average?

My wbcs are usually around 2 to 4. Not sure about neutrophils but my doc never seems concerned. I took a one month break in March for exhaustion and recently another break for my two endoscopies. The fatigue is not predictable. Juicing helps.

Gailcav
Gailcav
in reply to nstonerocks

Tell me more about juicing!

nstonerocks
nstonerocks
in reply to Gailcav

You can either juice or make smoothies with green such as kale as your base. General rule of thumb at least 3 vegetables to a fruit. Juicing requires a juicer. Centrifugal is best. You can make smoothies in a blender or nutribullet type thing, which is cheaper than a juicer. Juicing has the advantage of packing in more vitamins and enzymes per glass. Smoothies include the whole veggie or fruit, so you get all the fiber. Go on Kris Carr’s website. She has info about juicing and lots of other topics that might appeal to you. She has an incurable liver cancer Stage 4, 16 years. There are lots of other tespurc s online and books about juicing. I tend to juice a head of kale with 1/2 to 1 whole cucumber, 1/2 lemon and a wedge of pineapple. Depends on your tolerance for greens.

Thank you for the recipe. I have a Nutrabullet and need to implement it more. With the cucumber, I assume that includes the skin, as that is the most nutritious part.

I wash the skin and juice it. The juicer extracts the juice so the skin not a factor. Guess I would eat it if it were organic

kearnan
kearnan
in reply to nstonerocks

Just curious. What do you feel it does for you, make you less fatigued drinking that. (I would never juice). I still do malteds though:)

nstonerocks
nstonerocks
in reply to kearnan

I feel more energy for sure. I also feel like a get vitamins and enzymes that way.

Timtam56
Timtam56
in reply to kearnan

Malted? What do you mean kearnan?

kearnan
kearnan
in reply to Timtam56

Oh, it was kind of a joke. I am not into juicing, or taking extra supplements and such. I don't read books on how to cure cancer or any of that. I just take the medication prescribed by my onco and do not add anything to it unless the onco recommends it. So I just I just like malteds. It is a treat. It is with milk and ice cream and blended together. Nothing nutritional about it other than it tastes so good. McDonalds sell malteds.

Timtam56
Timtam56
in reply to kearnan

Ba ha ha. I thought it was some kind of good thing! We just call them malted milk. I love a hot cup of milk with some malt in it at night. But try not to cause I

M putting on weight. I keep j9king with the nurses that at the very least, if cancer could give me one good thing, I should be losing it, not putting it on.

🥴

kearnan
kearnan
in reply to Timtam56

Ha. When I was told I had stage iv cancer, I was alone and was pretty calm. I then asked if I would lose a lot of weight (that was my first question). She said no, as a matter of fact you may gain weight bc of the medication that you will now have to be on. I said damn....I was trying to find one silver lining.

Timtam56
Timtam56
in reply to kearnan

😫🥴😂

Gailcav
Gailcav
in reply to Sunny2020

My WBC was 2.2 and GRAN was1.1

Gailcav
Gailcav
in reply to nstonerocks

Yes! Makes sense!

Agreed that I feel better now on 125 mg for almost 2 years!

During my 1st month I thought death was imminent & cashed in one of my retirement accts & took my whole family of 4 to Hawaii!

If I knew then what I know now...

I think just hearing both the term “stage 4” & the “potential” IBRANCE side effects dies a number on one’s mind.

I know that there is a potential to die from serious infection while on Ibrance is a side effect. Perhaps during clinical trials this has happened; but I think now docs know better how to test counts and adjust dosages.

I sat for 2-hour “teaching appt” with an IBRANCE nurse who did teaching on this medication(which is probably mandated by “legal” of MGH cancer center’s practice); and as informative as that was—it was definitely OVERKILL as is the IBRANCE commercial on TV...again that’s a legal think!

Good luck I agree; you gotta live it comforts me to know that (per my UCKA ONC who was in on Ibrance since even before phase 1 & 2 clinical trials that he said one lady has been on IBRANCE/Femara Combo for 8• years!!!!

I honestly felt like I had 8 minutes when I heard Stage 4 coupled with all the side effects.

Most important is do t let this change you—sure it’ll slow u down, you’ll have crappy days, it’s frightening to think of the side effects that “could” occur; for a while I think I was halted; sure at one month I took off too Hawaii; but I let those two facts consume me for too long! I’m now almost worry free & I had the worst Scan-xiety & was depressed and anxious that I needed meds. I’ve recently warned of a SSRI antidepressant; but don’t feel bad if you ever need either that, Ambien or Ativan (beat used short term); just live knowing IBRANCE will hopefully by you some time and you’ll go past the average (which is probably statistically higher) if 22 months improvement of orofressive -free survival and be in that chategory of 8 + years and maybe that woman will have lived for 8 more years totaling by then.

Try to remember this also; no matter how much time Ibrance gives you, we are all here for you every step and many on here share so many innovative meds and therapies; this is invaluable information that can be used as further discussion with your ONC and team of doctors.

Sorry to rant; but if you can gain life quality and peace of mind from my mistakes in perception of my situation that’s my goal. That said the meds work with some and have terrible side effects for others.

Also my onc just sent my biopsy samples from ten years ago for further testing which shows a 2nd and 3rd line of targeted therapy & even one other type treatment. I always got some answer from old ONC that we have a bunch of things to trywhen & if Ibrance fails.

Thanks for listening and good luck

Savmyr
Savmyr
in reply to Bailey3266

So encouraging to read

kearnan
kearnan
in reply to Bailey3266

How could someone be on it for 8 years. I thought it was pushed through and approved in 2015 quickly bc of the success with clinical trials unless she was one of the women on the clinical trials to begin with.

Bailey3266
Bailey3266
in reply to kearnan

Delayed reply. My ONC is Dr Brian Dicarlo with UCLA—I’m just saying what he told me every visit I’ve been to with him as he wants it to hit home—a similar theme to above “chronic” illness—not 2 years—BAM-done!

It is true though-his BIO WITH UCLA-before the clinical trials-which (don’t quote me) started a while after Ibrance was actually discovered (I think it was put aside for some reason. I don’t know if the lady who has been on it more than 8 years took it before the actual trial 1; not sure how that works. In fairness to factual knowledge I’m seeing him - oct 9th I’ll ask him how she got it before phase 1; good question; but I do know he was part of the researchers from “...the beginning...” Dr Dicarlo. I will reply back—if my brain fog gets in my way—please follow up with me after that date!

In any event the given 22 months was based on old data and statistics changed over past few years as we DO see ladies on here who have taken IBRANCE FIR 4 or more years, I believe, it’d be interesting to know what the new stats show in terms of progression on Ibrance/letrozole combo? Does anyone know what Pfizer say about “progression/free survival currently? I started on Ibrance 2 years ago and those stats were saying AVERAGE 22 months & we know of 4 year on this website and my doctor knowing personally of a woman on Ibrance 8 years (which I’ll get more facts on)?

kearnan
kearnan
in reply to Bailey3266

Looks like today in Spain, They are providing at a conference some kind of news about Ibrance. (This was from Pfizer's own site).

First-of-its-kind comparative analysis of real-world data in the CDK 4/6 inhibitor class supports benefits of IBRANCE combination therapy initially shown in clinical trials

Tuesday, September 24, 2019 - 8:00am

EDT

Pfizer Inc. (NYSE: PFE) today announced the presentation of four IBRANCE® (palbociclib) real-world analyses. The studies support the effectiveness of IBRANCE combination therapy in everyday clinical practice and provide additional insights on its use in certain patients with hormone receptor-positive (HR+), human epidermal growth factor receptor 2-negative (HER2-) metastatic breast cancer (MBC). The posters will be presented at the European Society for Medical Oncology (ESMO) Congress 2019 in Barcelona, Spain on Sunday, September 29.

Among the data, Pfizer will share the first real-world comparative analysis of a CDK 4/6 inhibitor in combination with an aromatase inhibitor compared to an aromatase inhibitor alone.

myrtice
myrtice
in reply to kearnan

Thank you for this I formation.

So happy to have found you amazing ladies!💕

kearnan
kearnan
in reply to Bailey3266

Maybe he meant he knew a stage iv woman that was still living after 8 years and she was on something else first and then switched over to Ibrance. At my cancer center, it is considered a chronic illness. The word terminal is never used.

myrtice
myrtice
in reply to Bailey3266

Thank you for sharing this. I took my 6th dose tonight. I was wondering when I’m going to crash. Now I’ll enjoy each day as it comes to it’s fullest!💕

Bailey3266
Bailey3266
in reply to myrtice

I think we can private message; but I don’t know how. What I know is you must be mentally squashed Rn & I cannot promise how your body reacts to I/L combo; but I hope it takes without side effects as “progression free” as evidenced by @no radiographic evidence” is on all of our wish lists—if Ibrance does not work initially—lots of things should be tried before giving it up as 1st-line treatment (I guess once you go off to another Med modalities you cannot restart this particular drug protocol.

•I’ll take the 8 years outlook! My ONC also said if I were gonna have bad side-effects from I/L combo it’d have already occurred early in in treatment. Also the best places are Cancer Care center which lists Tier one cancer facilities and if you can possible get to one of the Top 10 listed for a second opinion or even as primary ONC that’d be best. But take that vacation and slow down your thoughts and try to lsee The bigger picture: here in this board/forum, braascancer.org

kearnan
kearnan
in reply to Bailey3266

The No. 1 hospital in the 2019-20 U.S. News Best Hospitals for Cancer rankings is University of Texas MD Anderson Cancer Center in Houston.

The 2nd best cancer center is in NY Sloan Kettering. Many people I know personally who have had various types of cancer have went there. I am waiting to get my medicaid approval and am considering switching over as I am losing confidence with my onco. I love the Cancer Center I go to because of all the resources they provide, social workers, nurse navigators, an attorney and how beautiful and calming it is. They even have a serenity room. But I am considering switching over and if I get approved for Medicaid as my secondary insurance, I will get free transportation via private car service there and back bc I live in Brooklyn and the commute would be too hard for me now.

I also read that women that do well on it for 9 months or more have a much better chance that the Ibrance will work for a longer period of time. I had a very rough time on it and the ladies that I know that are on it for 2 or more years didn't have the same side effects that I had. My week off was scary to me how sick I felt. Many women reported that they felt the same on their week off as they did on the Ibrance which amazed me.

We usually hear about the women who Ibrance works well for, women that it stops working for usually don't post. But it seems you are on the ones that Ibrance is the right treatment for you and I hope you have it work for as long as others have.

Can you list he topten cancer centers.?

Hi I have travelled to India twice after a relapse at 125 ibrance and then eventually settling on 75 for two weeks on two weeks off. My immunity drops considerably after two weeeks even at 75 and takes two weeks to rise again to about 1.4. As long as you feel well and take all the necessary precautions I e medical insurance for everything except what we have cos no one will cover it and be vigilant about where you are and going near anyone very ill , I think you will be fine. Let things settle first and then defo go. Wear your flight socks for sure and enjoy . All of the best XX

Gailcav
Gailcav
in reply to KateBush

Wow! India! You are brave! I will have a Pet Scan The end of October so I should know more then. They did see a small spot on my right lung, but it could have been a shadow. Are use hand sanitizer and eat raw garlic once or twice today.

nstonerocks
nstonerocks
in reply to Gailcav

Don’t use hand sanitizer too much. Not good for your skin. If you can wash w soap instead

Gailcav
Gailcav
in reply to nstonerocks

Thank you, that's a good tip because from what I understand you can become immune to antibacterial.

nstonerocks
nstonerocks
in reply to Gailcav

And it destroys the protective acid mantle in your skin

Hot water is also a jey and I think 5 mins and rinse down from the wrists. Lastly I do not touch faucets or door handle with my fresh clean hands & wash before cooking and after eating.

I traveled to Glasgow in March and stayed for 3 weeks. I travel to Singapore and Malaysia every 2 to 3 months and have had only 1 bout with the flu. I am on Ibrance 125 and have been on it for 18 cycles. My ANC is in the 1060 range and sometimes it drops to 968 but my onc allows me to continue. While you can, you should travel.

Gailcav
Gailcav
in reply to MyMiracle13

Thank you for the encouragement!

Hi there

I worried about getting sick when I started Ibrance after reading the leaflet...however I soon forgot and I just don’t do anything different...still mess about with animals and travel when I want in buses planes etc and I go to the cinema and theatre a lot and never been ill

Don’t obsess over it you’ll be absolutely fine

Barb xx

Gailcav
Gailcav
in reply to Barbteeth

I'm going to see Downton Abbey today!

myrtice
myrtice
in reply to Gailcav

Saw it last night with the girls.👍💕

I’ve traveled while on Ibrance. I also teach in a high school. Luckily I havenit had any problems and my counts are consistently low.

Gailcav
Gailcav
in reply to morty87

Good for you!

I’ve been on 100mg for 40 months. I’ve been to India (3 weeks), Brazil (3 weeks), Puerto Rico (1 week), and Europe (6 weeks) I travel with an antibiotic, just in case. In Ireland I got a UTI and a friend knew a doctor who sent in a prescription (I knew which). Otherwise, I was fine. Luck of the draw? My neutrophils are usually .8. My counts are typically higher when I return!

Thanks for the encouragement!

Well, make sure your insurance cover overseas. As long as it is not a third world country, I would not worry. In the past before the diagnosis, I went to Africa, Amazon and Peru. Glad I did then, bc I would not chance it now. In Amazon, I was at least 10 hours away from SUB-PAR medical clinic. The guide showed it to me before we left and I thought I better not get sick here. Sometimes people think they are covered medically until something happens and they realize that that country or hospital or clinic will not accept your medical. I know many women that still travel. But a cruise line should have a doctor on board and I know many who have traveled on planes. Enjoy!

Good advice! The is still a lot I want to see in the good old USA 🇺🇸 !

I live and work in Thailand but I am a Swedish citizen, my diagnos of mbc was found this year here in Bangkok and I am on my 6th cycle of Ibrance. I travel a lot in my work, Japan, Sweden, India etc. So far no problem, I am on Ibrance 125 mg and Letrozol. It is very encouraging to read about 4 years, 8 years etc. on this medication. I have muscle & joint pain but I am trying to stay positive and live my life as normal as possible. I am so glad I found the SHARE page. Thanks all💕

Gailcav
Gailcav
in reply to Savmyr

I take turmeric for joint pain. It really helps.

kcc9993
kcc9993
in reply to Gailcav

You may also want to look into the absorption of your turmeric. For example, forms that are hydro-soluble absorb better.

myrtice
myrtice
in reply to kcc9993

Good to know. Thanks

My white counts were always low. I wore masks on planes and in crowds. I washed hands often and carried antibacterial wipes, etc. all was good until my white count hit 660. Now I’m off Ibrance and still doing vey well.

That's great! How are you treating?

I traveled a good bit during my first four years on Ibrance. My doctor always let me have the week before and the week of travel off so my white count would be closer to normal during my trip. After year 4 however, my blood counts started really tanking and not recovering. My dose dropped to the lowest (75mg) over the last year and a half but my counts are even worse than ever and a side effect of pulmonary emboli have hospitalized me twice. Now I'm not allowed to travel because of the blood clots and blood thinners.... so if your only worry right now is wbc counts, ask your doctor first, but do everything you can while you can. After year 5, I've been the sickest and weakest since my stage 4 dx. I'm in a wheelchair now and can't do much for myself but I'm so glad I did everything I could while I could. Good luck!!

I'm sorry to hear you are in a wheelchair, but glad to hear you did everything you could when you felt better. Have you looked into nutritional supplements? They have helped me with other health issues and they are helping me now with fatigue and joint pain. I went to a Nutritional Oncologist and she ran a huge blood panel and made recommendations from the results.

When my counts are low my onc advises to stay out of groups. I see on this site that some do travel. I would check with your doctor. I hope you can go.

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