A year into MBC to Bones: I'm a year... - SHARE Metastatic ...

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A year into MBC to Bones

TnQuilter
TnQuilter

I'm a year into metastatic disease to bones. Initial disease was stage 2 twenty years ago (Her2neg, Est&Prog positive) Started off with Ibrance, letrozole, xgeva. Oncologist saw a small amount of progression and changed letrozole to Faslodex. My scans are stable with no progression to organs. I've struggled with neutropenia and am now on the lowest strength of Ibrance (75mg). My last blood work again showed mild neutropenia. My oncologist says this happens usually after a year on Ibrance. I'm now worried about what will happen if I can't take the Ibrance due to neutropenia. Also, has anyone taken CDB oil along with these drugs? If so, did it help and what did your doctor say about the combo? Thanks in advance for any information.

52 Replies
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I took CBD oil for my first three months on Ibrance Faslodex exgeva .It helps with pain and helped sleeping and my mood. Now -after 6 months I use edibles with occasional ibuprofen.

Whatever helps

Onc has no objection to CBd oil

I have to wait three weeks each month before my next cycle of Ibrance. I have been taking it a year now. I started cbd oil last month (low thc) and it has grows with my energy.

TnQuilter
TnQuilter in reply to Sarcie

Do you mean you are off Ibrance for 3 weeks instead of one? Is your white blood count low? But the CDB oil has given you more energy?

Sarcie
Sarcie in reply to TnQuilter

Yes. This month I was Two weeks off. My neutrophils go down extremely low and it takes a lot of time for mine to recover. The CBD oil has really helped my energy levels. It has only 0.7 of thc so no high or any bad side effects.

caw517
caw517 in reply to Sarcie

I have issues with Neutrophils also and have to take an extra week off sometimes. I was wondering what is you usual WBC and your ANC?

Sarcie
Sarcie in reply to caw517

My oncologist nurse calls and my neutrophils are usually 0.4. My platelets go down but aren’t a big issue as they pop back up

TnQuilter
TnQuilter in reply to caw517

Last month it was good at 1100 but this month went down to 800. The doctor would prefer it stay above 1000. When I was on the 125mg, it would go down to 600.

Hi 🎀 sorry. What is CBD oil ???

TnQuilter
TnQuilter in reply to Maludagui

Cannabidiol, a chemical compound in marijuana. It has been found to have many health benefits esp for those with cancer

Rego-park
Rego-park in reply to TnQuilter

Hi where can I order the CBd oil which company?

For neutropenia, my complementary

Medicine doctor has me taking mushroom pills. And I have added mushrooms wherever I can. I work in a 3rd grade classroom with germy kids and haven’t gotten sick, so maybe that’s something that’s working. I’ll have another blood test next week.

God bless.

Mimigram
Mimigram in reply to Merma

Which mushroom pills? I read Maitake-D-Mushrooms are the best to take.

Merma
Merma in reply to Mimigram

I’m taking Mycoceutics Immune Max by Clinical Synergy.

One of my moms doctor believes in CBD oil but there so many documentaries on it and how it helps I would try it I know everyone has a different opinion about it My mom is not really big on taking medicine so she’s at the point to where she saying that she wants to quit taking everything hormone pill and she hasn’t even started her chemo pill yet. My mom is going through a tough time right now She don’t want to take her pain medicine because she wants to be able to drive so it’s pretty tough

Red71
Red71 in reply to amylebanon513

I take pain medication..a Fentanyl patch and Dilaudid as needed...and still drive. I didn’t at the beginning when I was getting radiation and my pain wasn’t controlled, but I’m now almost a year into the pain meds and don’t find that they limit anything that I want do. I started driving just locally to the grocery store and my coffee shop when traffic was low and then increased my radius when I felt comfortable doing so. I don’t do long distance drives by myself anymore but that’s my preference.

I was on Verzenio for 6 weeks (150 mg) and lost 17 lbs., eventually couldn't even drink water because it hurt. My throat, stomach and intestines were burnt up. I used the Immodium daily per my Oncologist and went from projectile diarrhea to severe constipation for 7 days. After getting so weak from stomach pain, not being able to eat, immunity levels dropping, my Dr. took me off the Verzenio for a week, then started me on Ibrance 125 mg. While on Verzenio my pain level dropped to 0. On Ibrance, it is back up to an 8. I just finished my first dosage for 21 days on Ibrance so praying the pain gets better. I've been on Exemestane the entire time. I knew the Verzenio was working - my chest and neck swelling had disappeared along with my pain. It was amazing until I just couldn't bear the intestinal and stomach issues! I now take CBD pills as needed and find my energy is up a little, pain is down a little, I'm sleeping better. I've had to stay isolated because Flu is rampant here and my immunity levels are low.

History of cancer - I was diagnosed 5 years ago with breast cancer in a lump that had been a cyst that needed draining yearly. I asked to see an Oncologist and was told to see a surgeon first. Surgeon told me I had a few options - radiation and lumpectomy, single mastectomy and chemotherapy or double mastectomy and chemotherapy. I will never have radiation in the chest area - most Oncologists agree it causes lung and heart damage. So, I had a double mastectomy and finally saw a new Oncologist . She ordered additional tests on my mass and on my appt to have a check up the day before I was to have my port placed, I told her I would not do chemotherapy. She smiled and tried to calm me down, I was crying. She informed me that the newer tests showed that my mass was encased and mostly dead cells. So no chemotherapy! She put me on an inhibitor. After 10 days on the new meds, I woke up screaming in pain - every joint was on fire! My Oncologist took me off the meds and told me to go live life, I was cured!

Almost 5 years to that day, after having no insurance or being able to afford follow up (my husband sold the motorcycle his Dad gave him to keep me insured for a year after my initial diagnosis) I found a lump on my chest and my lymphedema pain was getting much worse. Turns out the cancer has spread into my chest wall, under my left arm and back. No bone or organs are effected yet. One Oncologist said he could give me 3-4 years. My sister is a surgical nurse and said I have 2 years. Great. My chosen Oncologist seems rather cold and distant. My initial Oncologist was fired from her group and moved to Arizona, where she started her own clinic. I found out that she didn't follow up with her patients!

I'm struggling to stay positive, keep moving. I find my energy levels are so low! Praying the Ibrance works to help slow down the disease. Concerned because there seems to be no real treatment plan, it's like "let's try this or that and see how you do." I feel like we are all tests subjects!

Oh my. You have had quite the challenge. Imperative that you find a doctor that you really feel “has your back”. It is hard to stay positive when you feel neglected.

Omg find another oncologist that you are comfortable with and someone you have faith in! Ask them what their plan would be for you. You know, no one can tell us how long we have left!

I take cbd and thc nightly. I also consume mushrooms regularly. My wbc fluctuates but I am able to maintain normal life, workout daily, teach middle school. I also incorporate fasting and whole food plant based diet when eating. It works!! My scans show no active cancer.

Survivornow
Survivornow in reply to tmoews

Turkey tail mushrooms? That@ what I found doing research.

tmoews
tmoews in reply to Survivornow

Turkey tale, reishi, and chaga.

So the mushrooms help with the low white blood count? Or just good for the cancer in general?

Merma
Merma in reply to TnQuilter

My understanding is that it’s good for white blood cell counts.

Mimigram
Mimigram in reply to tmoews

I am curious what your fasting schedule is like as I am thinking about doing that.

Buffwright
Buffwright in reply to Mimigram

Be careful with fasting if you’re on Ibrance. Uptake of Ibrance is most effective when taken with balanced fat/protein meals. (I.e. they don’t say “take with food” to protect your tummy!).

Hi, TriQuilter! I developed neutropenia and had low WBCs pretty much from the get-go w/Ibrance, which I was on for 26 months. I had to take prophylactic antibiotics during this time when I had routine dental work, i.e., cleanings, but I managed to stay healthy. I was very careful during this time to stay away from anyone who was even mildly sick.

TnQuilter
TnQuilter in reply to Dianne417

What are you on now after the Ibrance?

Dianne417
Dianne417 in reply to TnQuilter

I've just applied to participate in a trial at Dana-Farber for a selective estrogen receptor degrader (SERD) called GDC-9545. I will go in to sign the consent form and to meet with representatives from the research team tomorrow, along with getting blood work and a CT scan. I will hopefully return sometime during the w/o 3/11 for a bone scan and to start on the new medication. I am currently taking nothing as my local oncologist said I needed to be off all my cancer drugs for a month before I could begin a clinical trial, but D-F said that for this particular trial and another I would have qualified for, it is only two weeks.

I could have begun on the new medication sooner if I am accepted for the trial, but I have other things going on that would have made it inconvenient to start before mid-March, and my D-F oncologist did not feel this w/b an issue medically. I did, however, want to get the approval process rolling asap and am grateful to D-F for making the arrangements to get me in this week.

girlsptz
girlsptz in reply to Dianne417

Good news Dianne. Good luck!

Sandra

Dianne417
Dianne417 in reply to girlsptz

Thank you, Sandra! Fingers crossed!

TnQuilter
TnQuilter in reply to Dianne417

Keep us updated as to how you do.

Dianne417
Dianne417 in reply to TnQuilter

I will TriQuilter! I just signed the consent form for the study at the hospital this afternoon and had some preliminary tests, e.g., EKG, CT scan, and blood work. I probably won't know until the w/o 3/11 or after whether I have been accepted. I'll let you all know. Thanks! Dianne

You have alot going for you! 20 years between initial BC diagnosis and finding bone mets suggests that the cancer is not a fast growing aggressive one plus with an E + mbc, there are alot of treatment options. One thing I do suggest, if you haven't already done it, is to see a bc specialist onc for a second opinion. IF you are in the US, the best places to go for that are the cancer centers that have been given the "Comprehensive Cancer Center" designation by the National Cancer Institute, and listed on their website. CCs have to meet rigorous standards to be given that designation. I was diagnosed denovo with bone mets and an E+P+ her2neu- bc like you have in 2004 way before Ibrance was available. I have a bias towards staying on each successive hormonal tx as long as possible, but that is what has worked for me. My onc was an older very experienced and very calm woman who did not allow fear of progression to determine her recommendations. When my TMs started rising, she never recommended changing meds until more than "slight progression" was noted on scans. Healing and progressing bone mets can be difficult to tell apart..... Anyway, I got nearly 5 years from Femara (Letrozole) and the bc specialist onc I saw for a second opinion, at my own onc's suggestion, told me that when Femara works, it often works for years and not just months. Then I got over 9 years from Faslodex. I have also been on first Zometa and then Xgeva most of the time, though I did need to take a break for awhile as my bones had become like bones with osteoporosis. Ibrance was added to Faslodex for a few months in 2016 and created what seems to be permanent damage to my lungs, a condition called Interstitial lung disease, that was still not listed among the potential side effects of Ibrance the last time I checked, though there are more experiencing it all the time. So I have an anti-Ibrance bias too. But we each have our own unique set of cancer cells and response to treatment......predictions are very hard to impossible........ But you do have alot of positives going for you!

TnQuilter
TnQuilter in reply to PJBinMI

Thank you so much. That's a lot of good information. I did go for a 2nd opinion at UN of North Carolina. The specialist there thought I might need to stay on Femara for longer but I was afraid since scans looked slightly worse. Maybe I should have tried it longer. You have really given me some hope and I really appreciate it!

PJBinMI
PJBinMI in reply to TnQuilter

Unless the cancer is an aggressive one, it can be okay to be slow and watchful about changing meds. There are exceptions, like if liver mets are causing liver failure.

Are you still able to quilt? I have a couple of handmade quilts and really admire the attention to detail that goes into making one. I hope you can do things like quilting that give meaning to your life! Things like that sure can help us feel more normal.

TnQuilter
TnQuilter in reply to PJBinMI

Yes, I quilt almost every day and am expecting my first grandchild in Sept. Already finished 4 baby quilts and one wall hanging.

PJBinMI
PJBinMI in reply to TnQuilter

Beware! Grandchildren change our lives forever! lol But it good ways, not like this lousy cancer. They steal our hearts and often get away with things our children didn't when they are with us.

SoCalLady
SoCalLady in reply to PJBinMI

Are you still on Faslodex now without the Ibrance?

PJBinMI
PJBinMI in reply to SoCalLady

No. I did continue on it for about two years after stopping the Ibrance. I've been on Aromasin, another AI, since January of last year.

Dianne417
Dianne417 in reply to PJBinMI

Congratulations to you tomorrow on 13 years of MBC survival! Whoppee!! I wish you many more. :)

Dianne

sisina
sisina in reply to PJBinMI

Hi, I am from Slovakia. Pls, how long is it crucial to take Imbrance in generaL,

PJBinMI
PJBinMI in reply to sisina

Ibrance isn't used as the only cancer medication and is given along with one of the anti-hormone drugs, often either Letrozole or Faslodex. If the ibrance is causing you serious side effects, talk to your doctor about stopping it. If you have metastatic breast cancer, you will probably take a drug until it stops working or causes side effects that you cannot tolerate. Breast cancer tends to be highly individual and what works for one of us may not for another even though the cancers seem very similar.

I took a couple of forms of cbd. You must be careful not to waste your money on many that are just not that effective. It must contain real terpenes not be made from hemp.

I recommend to read Jane McLelland’s book “How to Starve Cancer”. She also has a Facebook page. I have the same MBC reoccurrence after 13 years only it went undetected. It came back on my left ovary and fallopian tube which we removed after noticing a cyst on my ovary. I am on 75 mg of Ibrance because of neutropenia and letrozole. I know my tumor markers have gone down. I will have a pet scan in April which never detected MBC. On Jayne’s Facebook page some people talk about CDB oil and refer you to a webpage where to order it. I personally have not tried it .

Mimi

cbd-international.net/

I read about a clinical trial where patients are taking Ibrance on a different schedule. Based on that (and with my onc approval), I've gone from a 21/7 schedule on Ibrance to a 5/2, 5/2, 5/2, 6/1 schedule which has kept my neutrophils within the normal range. By taking it for fewer days with the short breaks, the WBC doesn't drop to so low. Mine have been okay since starting this schedule - low, but within the normal range. When I started the drug, I would have to go off it for an extra week for my counts to get back up. This way, I'm on a constant dose of the meds without an extended break. I got the idea from another support site. This is a cut-and-past from that site. It transfers over a little weirdly, but it's readable:

"She and her pharmacist feel that due to the average 29-hour half-life, prolonging the time off beyond 7

days is not as optimal as keeping on a consistent dose, even if it is a lower dose....however, they also

believe that once you have titrated down to 75 mg, if you are still getting a good clinical response but also

still having those low blood counts, then shifting the dosing schedule around is definitely worth trying.

Her pharmacist colleague (Sam, a lovely man!) says "There is no magic in the number 7", so you don't

necessarily have to move to taking an entire second week off, nor do you need to keep on a 21-day "on"

cycle....he is a strong advocate for being creative, so long as you keep a few principles in mind:

Based on where Ibrance works in the cell reproduction cycle (and likely this holds true for

ribociclib/Kisquli, since it shares very similar CDK4 and CDK6 activity--abemaciclib has a slight di􀁷erent

action profile and we never discussed it since it was long before it came to marker that we had our

discussions)

* the time "on" Ibrance should always be longer than the time "off" the drug, and the longer "on" interval

with the shortest "off" interval is the better choice (so, for example, 14 days on and 4 days off is better

than 17 days on and 7 days off)

* due to the onset, duration of action and half-life of the drug, he suggests at least 10 days "on"is best to

get meaningful benefit

* 2 days on and 1 day off for 21 days (or the 30 days you would have medication for on that regimen, then

take some days o􀁷 if needed based on your labs) is a very sound approach; he would not suggest ever

going beyond every-other-day dosing; and he would prefer someone try every 36 hour dosing before they

tried every-other-day. Other schedules could include 3 days on and one o􀁷, or 4 on and 1 off.

"

This is helpful

Good to know, to discuss with oncologist, in case.

This is very interesting, thanks

Baseface
Baseface in reply to Southside25

This is a great reply, had to dig for it but it is so useful

Since Faxlodex injections are much more expensive than Letrozole, are you having any problem with your insurance covering all of it?

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