Diagnosed with BC when I was 46, bi lat mastectomy, chemo and tamoxifen. Mets to spine this year after 25 years cancer free.
On letrozole and finished radiation. Trying to decide if I really want to take verzenio now or wait a while. The side effects look awful.. I suppose we all debate quality of life.
Anybody tried medical marijuana for side effects?
Thank you all for sharing your stories. It really helps.
Glad you found us also. You provide another look at Cancer. Glad also you had 25 yrs. cancer free. Why did you decide to have both breasts removed? Just curious
I had my left breast removed because of the tumour breaking through the skin. They have never mentioned taking the right breast off even though it has cancer as well. The main concern now is my lungs.
The mets to my hip has been stable since diagnosis in 2013.
Cheers, June S.
I had lobular as well as invasive ductal and was told there a is a higher likelihood of it eventually spreading to other breast. I also had a complete hysterectomy at same time as second breast….I had a very large cyst on ovary and just wanted everything gone. Who knows if it was best thing to do but it gave me peace of mind.What has kept the Mets to your hip stable?
Well we aren't even 100% sure it is cancer but it has been stable since the beginning. So who knows what kept it that way. The meds, ect. or whatever
Cheers, June S.
Hi Peggy we are similar so would like to follow along with you. I was 44 and had bio mastectomy then long interval before MBC( 16 years) just finished 18 months on Ibrance with some markers and a lymph node growing so I have to move on….I had foundation med’s mutational test and he could see I hadn’t lost my sensitivity to estrogen so will switch to same class of drug to get the most mileage out of CDK4-6 before marching on. So I am about to start verzinio and aromasin. Side effects will be less harsh than Ibrance( on neutrophils anyway) and some people get diarhea but not all plus it settles snd I will just take Imodium. So I am praying I get 1+ year as Ibrance only lasted 18months.
Hello, Our paths sound very similar, I had all the same as you with 10 years cancer free. I was diagnosed 17 months ago with MBC and with what looks like some possible progression, will be switching from Ibrance to Verzinio if this next scan confirms actual growth.
I have tried medical marijuana as it’s legal in my state. I like tinctures or RSO, I will probably never smoke or vape (I don’t like the smell). It helps the pain and nausea a bit but I just feel so groggy the next day. I’m still trying to find a happy medium between meds and natural remedies, many days I just use the heating pad and endure the minimal pain. I am starting radiation to my spine tomorrow to see if this can reduce some Mets.
Allison 😊
Hello Allison,Are you Hormone positive? I started taking letrozole about a month ago and finished 2 weeks of radiation! I had broken vertebrae on L1 and T12. They also did bone cement. Not much pain now that the surgery is behind me.
I am supposed to start Verzinio in a couple of weeks.😳
How did you do with side effects from Ibrance?
I had no side effects from radiation other than a rash about a week after I completed it. Tiredness maybe but I have that anyhow😎 I continued working though albeit at a slower pace.
I read that med marijuana can help…I haven’t tried any yet. It seems there is no perfect med, holistic or not. All have some side effects. Olivia Newton John says that marijuana has helped her greatly. She has MBC also.
Hope your scan comes out well…always stressful…isn’t it?
Thanks for replying and please stay in touch.
Peggy
Hello Peggy, Yes, I am ER+, HER2- . I actually start radiation for my spine (T3-S2) tomorrow to get some pain relief and then there is talk about possible cementing, I am encouraged that it sounds like a pretty easy process.
Ibrance has been pretty easy, I have low neutrophils every month so I have had two dose reductions (I take 75mg one day, 100mg the next). My hair has thinned and is a frizzy mess but I don't mind that as much.
I'm very happy that my Oncologist is open to letting me try another CDK4/6 as Piqray is also in my future, I have the PIK3 mutation. I have not heard many positive stories about Piqray (if anyone reading this has any... ).
I would love to know what Olivia Newton John takes, I think her husband grows it and makes it into a tincture (I thought I heard her say that in an interview).
I hope you do well on your meds. I just re-read your post, I am also on Aromasin and love it so much better than Letrozole/Femara, I had a ton of joint pain on that.
Allison
Good luck tomorrow with radiation….nothing to fear. I am actually on Femora and I do have some bone pain…hmmm…interesting. I took Tamoxifen 25 years ago for 5 years with no side effects.
Hi Peggy,My advice is to take as little medication as possible as long as your mets are controlled. If letrozole continues to work by itself, go with the flow. You could always add verzenio at a later point if a cancer mutation develops and letrozole quits working.
Best wishes,
Cindy
Makes good sense to me but my oncologist is pushing for Verzinio. You are echoing my thoughts though. Why take additional poison until you know for sure you need it.Thank you so much! Hope you are doing ok.
I think some oncologists receive perks from drug reps so like to give them business.
Canada has socialized medicine, and cancer centers offer very high salaries for physicians. My experience with Canadian physicians is that very few take the time to read research studies but simply go with their practice guidelines. Currently, according to Bestbird's book ("The Insider's Guide to MBC"), the guideline virtually everywhere for postmenopausal HR+ HER2- patients is a targeted drug and an AI, but no jurisdiction tells the physician s/he should test for the cancer mutation to see if the targeted drug is actually needed. Patients seem to be expected to tolerate side effects without questioning why they should.
I just checked my bloodwork, and my liver seems to be functioning normally so I'm happy about that. I have extensive mets in most organs and bones so I don't expect to ever be in remission, but am happy as long as there's no new progression. Thanks for asking!!
Warm wishes,
Cindy
Interested in knowing for how long you have lived with 'extensive mets in most organs and bones'. Thank you
Many thanks for asking! I was diagnosed in 2019, 13 years after early breast cancer in 2006. I realize that you didn't ask me to give my full history, but I decided to write it all out. Do tell me whether you are concerned about your own number of mets.
I was already 60 when BC was discovered on a mammogram. I then refused a right breast mastectomy since research studies in Europe indicated that these were not helpful. My kind surgeon really wanted me to have a mastectomy but did do three lumpectomies instead. I also refused chemotherapy because a 2006 review study at the M.D. Anderson Cancer Center in Texas indicated that chemotherapy only improved survival rates by 4% for women over 50. I did do radiation and took tamoxifen for 5 years.
It was a resurgence of lymphedema in my right arm in 2019 which prompted me to seek medical attention. I have not had a mammogram since 2006 (and do not expect to ever have another one). My GP sent me directly for a CT scan in 2019, and it was ultimately determined that a lymph node in my right arm had metastasized, and, along with other lymph nodes, cancer had spread throughout my skeleton and lungs along with my spleen. The mets in my liver became obvious in 2021 but my liver enzymes remain healthy. More recently, a large number of subcutaneous nodules and several spiculated masses have been mentioned on CT scans. None of these bother me, but the lymphedema in my right arm is still a problem.
The obvious point in my case is that my cancer has been very slow-growing. I have no idea how long it's been growing but I think it may have been speeded up by the open-heart surgery I had in 2018 to replace my aortic valve. (My heart had to be shocked three times to resume functioning so I'm thinking that may have speeded up all sorts of bodily processes.) However, I was extremely short-winded prior to my heart surgery, and the cardiologist thought that was due to my faulty heart. Now I think my short-windedness was due to my lung mets since it has gotten worse since 2018.
I am fortunate in that, so far, none of my organs is giving me much trouble. Cancer has not yet appeared in my stomach, pancreas, gall bladder, kidneys, or bowels, etc. Cancer has not reappeared in my breasts since 2006 so I'm glad that I did not have a mastectomy then as surgery is not easy on the body. I have no idea whether chemotherapy in 2006 might have stopped some cancer spread but, given my age and the 2006 research paper, I think not.
All my current complaints have to do with fatigue and consequences of cancer meds (no eyelashes, hair loss, watery eyes, sore joints, very dry skin, etc.). The bottom line? Cancer and cancer treatments have really speeded up the aging process in my case.
I guess I describe my mets as "extensive" because I am comparing mine to those mentioned by many other respondents to this forum. Now that I've written all this out, I'm happily reminded that many of my organs are unaffected so far. Thanks again for your question!
Best of wishes,
Cindy
very interesting Cindy. i never really thought about testing to see if the cancer mutation is present, and only giving the targeted drug if it is. my onc has never mentioned testing me for anything. is that abnormal? do most test for mutations? really curious.....carole xo
Hi Carole,
It seems to me only a very few of the respondents to this forum were tested for the relevant cancer mutations before being prescribed a targeted drug. I think someone mentioned that the testing for mutations is expensive, and most insurance plans don't wish to cover it. However, that, if true, makes no sense since nothing is more expensive than the monthly cost of the targeted drugs!
Hugs,
Cindy
penny-wise, pound foolish?? makes no sense like you said. and disturbing to be prescribed meds, with the potential for harm, if that med is not a targeted match. that is not putting the patient first. and a waste of resources. maddening!
hi again Cindy. not trying to beat a dead horse.....just want to make sure i understand this correctly.
so for sake of an example, i will use ibrance. are you saying that only those with mbc who have a specific mutation that is sensitive to ibrance will benefit from taking this med? and if you don't have this specific mutation, that the ibrance is of no real benefit? and so on with kisquali and verzenio? each one of which you need to be tested for?
or.......are you saying if you have the specific mutation for ibrance, do you automatically have the same sensitivity to all 3 of the CDK4/6 inhibitors.....i.e. ibrance, kisqali, and verzenio. and any one of those 3 meds will be beneficial, providing of course that you have the mutation.
and lastly, if you do NOT have the specific mutation, or don't know because you were never tested to begin with....that you (and your onc) really don't know ahead of time if the med will work. and then it is a matter of trial and error based upon how your cancer responds?
so sorry to bother but i really want to understand......
thanks!!
carole xo
Hi Carole,
I was certainly suggesting that one needs to have a cancer mutation before one needs to have a targeted drug. It was my understanding that the reason why the median PFS was longer in the group that was given Ibrance with letrozole compared to the group that was given only letrozole was that there were a number of people in each group with cancer mutations.
However, I assumed that it was known what the specific cancer mutation might be. Now, my reading of the early papers on the Ibrance trials indicates that it was not at all clear which cancer tumour mutation(s) might be involved! It seems that the patients in the original clinical trials were purely guinea pigs with only a hope that the benefits might outweigh the side effects!
Hugs,
Cindy
hi Cindy. i especially like this statement from you 'Patients seem to be expected to tolerate side effects without questioning why they should.' well said👏. carole xo
hi Peggy.
welcome to this site...great info, support, advice! and nice to bounce things off of people who 'get it'!
wow....25 years NED and then bam! what a shock to the system....sorry to hear this. i had primary BC diagnosis in 2013 and did what i was told back then....R mastectomy with lymph node excision, 5 months of strong chemo, and 6 weeks of radiation. by the end i felt like shit...with lots of remaining side effects....i.e. CICI (chemo induced cognitive impairment...more commonly known as 'chemo brain'), neuropathy in both legs and feet, and some upside down eyelashes...lol.
for me, the cancer returned 3-4 years later.....diagnosed in 2017 with mbc mets to spine and pelvis. this time around, i decided not to just do what i was told but to be an active, participating member, in my own care plan. yes, the whole quality of life debate. and the whole benefits vs risks when deciding what meds to take...or not take. i wanted to be part of the 'team'. in fact, i wanted to be the leader of my team. is that asking too much. apparently sometimes it is?. i think oncologists sometimes push for meds that are part of their 'standard of care' approach but i prefer a more 'individual' care plan. so i am not surprised that your onc is pushing you in the direction of verzenio. but like Cindy (Hazelgreen) already mentioned, if you have not yet decided on verzenio and letrozole alone is working at the moment....no need to rush on that decision...can always be added later. I also agree with Cindy that 'taking the least amount of meds, as long as the cancer is controlled', is a good option. ultimately it is your decision to make....as long as you are making an 'informed' decision. listen (but not blindly) to your onc and ask many questions, seek answers from places like this site, do your own research, follow yours scans blah blah. and then decide if you want to add verzenio to the mix. (just sharing my thoughts)
i am 4.5 years into my mbc diagnosis. have been on letrozole only, having declined Ibrance from the start...after making an informed decision based on what i felt was best for me. not for everyone else with mbc....but what i felt would be best for me. that hard chemo back in 2013 really made me think about which side effects i could, or would, tolerate. and no, my oncologist was not happy but she got over it😉.
up until very recently, i have been bone-only mets. six months ago, i had multiple supraclavicular lymph nodes in my L side of neck pop up and confirmed as metastatic via ct scan. therefore, i just made the switch from letrozole to monthly Faslodex injections. in fact, today was my first Faslodex injection and it went great! not even painful....just a little discomfort but was over quickly. yay!!! i am really happy with this decision. and no, my onc was not in favor. but i did my 'homework' and think i made a well informed decision that i can live with! (no pun intended...haha)
as for the marijuana....yup, i use for both pain and nausea and recreational....calms me. i smoked it back in 2013 going through treatment and now using it for mbc 👍.
happy you found us!
sending a BIG hug....
carole xo
Wow…thank you so much for your info.. I am so delighted that I found this site. Amazing people. Any interest in a phone chat some day?
sure Peggy. would be up for a chat sometime....sounds great. you can contact me..or me contact you...via Personal Messaging on this site. are you familiar?
Are you on messenger? My phone # is 901 2898787. We are central time.
yes Peggy, we can all use personal messenger. i will send you a PM now and you will be alerted by the 'Chat' box at top left of screen. very easy. carole xo
Hi Peggy—
Sorry you are joining this MBC club, but I welcome you! I had 12 years between initial BC and MBC diagnosis... what a shock!
I use medical cannabis tincture with CBD daily and have found it helps me with sleep.
I wish you the best… cindi
Hello and welcome. Sorry for your shocking MBC diagnosis. There’s never a good way to get such news, and it’s always gonna be a shock, whether you’ve previously had cancer or not. I come from a slightly different perspective having been diagnosed MBC from the start I have no previous experience of treatments or operations to effect my current judgement of treatment choices.I have extensive bone mets….whole spine, skull bones, most ribs, sternum, bilateral shoulder and pelvis. I’ve never been given any radiotherapy options….not sure why as it seems many others start off with that?? May be mine are too spread? I have no medical background and trust my oncologists recommendations. I do research them and ask a lot of questions but I’ve not decided to reject any treatments.
So far I’ve had two of the three available CDK inhibitors. I started with Kisqali which effected my liver. Before moving onto another option, my oncologist called in another fellow specialist and together we discussed the pros and cons of whether to take time trying to adjust dosage strengths of the first medication or if it would be better to move onto another.
I appreciated this approach, it was without ego or bias, and was totally based on my personal test results and the knowledge of two very experienced Doctors.
What I’m trying to say is don’t let previous troubles cloud your current reaction to choices. There are many people here who successfully take Verzenio. The diarrhoea side effect tends to stabilise and Emodium is routinely prescribed to counteract the issue initially.
I’m currently taking Ibrance with Femara, Zoladex monthly implants and Zometa monthly infusions. The tactic for MBC is different to localised cancer, as ours unfortunately can not be completely irradiated. Being prescribed one of the three CDK inhibitors (Ibrance,Kisqali and Verzenio) seems to be the most common course of action for oncologists now and I’d like to believe that they know what they are doing.
As far as Marijuana goes…it is not legalised in my country and I’ve not tried it, or any other alternative therapies.
Wishing you all the best, and respecting that you have every right and ability to make your own choices.
Best of luck Zoe xx
Thank you so much for your informed and thoughtful response. Will follow you here and I wish you the very best of everything.
MBC Journey so far
Am I NED??
Starting Piquay this week
CT scan revealed I am stable
I thought this site was private????
