Hello all. Today I went to see my Oncologist for my regular one monthly check, hopeful I’d be stable yet again, but also knowing it could be that the meds are not working anymore. That this visit could just be the one where I’m told it’s time to try something else. So excited, cause I was told I am stable again! And then she said..... I don't have to come in every month for a review with her and for my blood test anymore. I can now drop down to a 2 monthly visit. And she prescribed me two months of palbociclib and letrazole! And no Denocumab injection in between, and I’ve been having them monthly for 2 years now.
Has this happened to anyone else here?
This means I can plan more frequent....or longer holidays. Wohoooooo. She's very happy with my progress. I am too! Very happy.
Feeling soooo happy about not being tied down to these monthly visits. And every two months makes such a difference. But.... Always a “but”. Do you think this could be because the hospitals are worried about Coronavirus? She did make reference to it when I first went in. How it’s a pretty awful situation all round the world.
And here in Oz, we have had a few outbreaks. I have decided not to go buying any airline tickets for overseas just at the moment, as I think it’s a little risky, and I can’t afford to not get a refund if it turn out I can’t travel.
What are others thinking about it all here?
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Timtam56
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As to Covid precautions, I received an email (a general email), to use my HMO's mail delivery for meds so to avoid the crowded pharmacy. And I did order my Letrozole and Pradaxa to be delivered to my doorstep. Ibrance I still have to first do labs before my onc will release her ok for the new month. I see her once every three months.
Great news! I was dropped to every 2 month doctor visits starting last Nov when I was NED. However, I still go to the cancer center for my monthly blood tests & Faslodex shots. I wish those could move to every 2 months. Or I could get an RX to get them elsewhere. Does anyone do that?
Why? Is your cancer center quite a distance from where you live?
The way I look at it is that one day per month is a small price to pay for fighting the cancer. I think with the falsodex that it has to be given to us regardless if we do not have to have scans every three months. Falsodex stops our body from producing estrogen which is what, for many, feeds our cancer. Even when I had my operation and was off Ibrance for almost four or five months, I still had to go to cancer center to get my shots. I don't think they could give it every two months instead. So even if you have to drive a bit longer, it is one day out of a whole month. Keeping ourselves as healthy as we can may involve some inconvenience, but it is better than the alternative.
Hi Aamkerns: We have a cabin in NC to spend the summer months to get out of the FL heat. Last summer, I drove back to FL 10 hours for my monthly blood work & Faslodex then back again to NC. It took a lot out of me. I have discovered that there is a cancer place 2 hours away from NC that will handle the monthly bloodwork & Faslodex shots & keep my FL oncologist informed. This will make life a bit simpler for a few months this year. Still working out the logistics. ❤️🙏❤️
Oh that is a whole different situation. First, jealous. I have a best friend who lives in FL and they go every single year to NC with her brother's family also. Must be nice. That is different then. Tell your onco. She may suggest a place for you to go then. That is too long a drive. I am sure they can work something out.
I would assume your onco would agree also as that is too long a drive to make and ruin's the whole point of your vacation. I would think there are people that come here to NY and are able to get shots here if they are out of the country.
That sounds wonderful to get away from the heat and go to NC. I agree 10 hours is way too long. I will have to go with my friend one year to see how NC is. I think they rent a house, the same house for two weeks. They have been doing it for years.
I always have my Fulvestrant and xgeva injections done at my GP office after I have my monthly blood work done at our local clinics .
I have scheduled this to work with my end of the week 3 off ibrance . This way I know I’d my blood work is good fro both starting ibrance and the injections.
This saves me a 3 hour commute plus waiting time to my local cancer clinic . I can be done in 1/2 hour . .
Much nicer
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My GP would never ever do the injections. He is just a primary doctor no more and he would not take on the responsibility of doing so. Most his clientele is elderly (I am not elderly at 60 yet, am I LOL). But no, I do not think most primary doctors here in Brooklyn would be willing to do it. But when I go to the cancer center, it's always a three part trip. I get my blood work done, then by the time they call my name to bring to me office to wait for my onco portion (by that time she already has the blood work results from earlier) and then I finish up with my injections.
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The injections are done by one of the registered nurses at the dr office.
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Therein lies the key. My primary is a regular elderly doctor who has been on the same corner for years. He does not have a nurse on duty. He does have some kind of medical aide that he bring into the office with him if he needs to look where I may have to pull up on top a little or whatever. More for his own legal safety I guess which I don't mind bc I get in these days when people are so litigious.
I had just started two month appointments when my scan showed a new met on my skull. It was nice for the short time.
The new skull met was 6 months ago. My oncologist didn’t seem very worried about it. When I have my CT scans every three months he will have my head scanned every other time. This month should include my head although my paper work didn’t include it so I called and left a message asking them to add it. Hoping they did. I worried when he told me but he wasn’t the least bit worried. It’s not his head though.
Then if he’s not worried perhaps it’s not a big deal. I have Mets in two lymph nodes which also don’t seem to bother my onc. She only ever discusses the spine metastasis.
Hope they include it in next scan and all will be well!
Well, when my onco told me I had two holes in my spine, I also got a bit freaked out but she seemed not to think it was that much of an issue. Then when I questioned her as to why I am still on the Verzenio if now there were two holes in my spine (I have original mets in my lungs) she said she saw no real reason to worry and we would see what the next CT scan shows. So if they are not worried, it is because they know the difference between when something looks very serious and when it is not considered that serious. Of course, for us it is always serious. But if your onco is not overly concerned, there must be a reason.
That seems unfair! Damn it! Tell me sarcie, can you feel you skull Mets. Cause I reckon I do feel them every now and again. I’ll feel a pain, touch or scratch my head and then realise! “Oh! That’s right where that met is.” Does that happen to you? Also a definite feeling of the ones in my ribs.
On the back of my skull I get a lot of pain where the Mets are. One the front I don’t notice. The ones in my spine I have a lot of burning pain and the ones on my pelvis and hip really hurt.
Hoping it can be controlled or maybe even removed. Is that possible? Is there a plan of action yet , on how to deal with it? Thinking about you and wishing you well.
The Mets on my skull are there and are treated with the Ibrance and Letrozole just as the other bone Mets are. It is not on my Brain and 🤞🏻it never is.
That is my fear too sarcie. We are so similar with our Mets and pain. Thank you for your mapping of it. I am having excruciating pIn in the one in my upper ribs. Up near my shoulders ...at night. I cannot lay on one side as they burn with pain. I have to take breakthrough painkillers at present.
sarcie, do you wear your hair long? I do. And I love having it long and trying it up. But it hurts my skull sometimes. I often think of cutting it, but don’t want that look just at the moment.
Me too sarcie. A deeper inside itch. But some scratching of the scalp really helps doesn't it? I also can't leave the washing of my hair longer than two days. Or it hurts more.
I purchased a product called Scalpicin. It works well to take away the itch a I found it was keeping me up at nights. Aloe Vera gel also works but makes for quite the messy hairdo.
Awesome! Enjoy the two month break! My cancer center is not associated with a hospital setting so I don’t think they would change appointments because of Covid-19. I’ve not been lucky enough to go to two month appointments but my oncologist works around any vacation you want to schedule.
If the workers and receptionists and staffers at the Cancer Center show up for work every day and they do not even have Cancer, then I am not going to worry about going to the cancer center bc of the virus.
Love it Sandra. And always give the handle of the tap a rinse while washing your hands as you never know if the person before you washed properly. There's my bit. And that's all. I agree re: masks, and washing versus hand sanitiser. 👍🤪
That’s fabulous news! I too wonder if and when my tolerance of ibrance and Letrozole might change. My oncologist is head of department and does a lot of travel to give lectures etc. I rarely see her but have phone appointments after the 3-monthly scans. If the news is bad I’d see her in person I guess. In between I speak to and email with her NP, who is great. Smart, encouraging and kind.
You’re fortunate to see your oncologist as often as you do. I can imagine now doing it every two months though would be a bonus.
What do I know but I doubt this change has anything to do with the coronavirus. All oncologists have a huge caseload so if they can see a patient less often, it frees them up a bit. I think she only mentioned it as it’s on all our minds at the moment.
Do you not usually have blood tests before beginning a new ibrance cycle?
Such good news to be “stable” again - really happy for you! 😍🙏🏻
Yes Red1246. I normally do have bloods before a new round of ibrance. But she said it will not be necessary every second time now, because I’ve been stable so long, she believes this program is going well for me. 👏🏼👏🏼
Great news ! ...Wishing I could have bloods every second month , especially in the current climate ! .
I too have been stable for a good while and had ‘within normal Ibrance range ‘bloods , but I believe it’s normal protocol here for NHS and strict NICE regs .. But I might just ask when I see her next month, given how busy hospitals could be ! I see my onc every 4 months and have a ct scan every 6-9 months , and monthly bloods / Ibrance meds in the chemo unit with the chemo nurses every 28 days .
I too haven’t planned any travel abroad for the foreseeable future ... decided to get the e- bike I’ve been thinking about for a while , since hearing ladies on here talking about theirs! ... I can then enjoy the Spring in the lovely countryside close to my home ( albeit hilly !) . Any advice on e-bike choice much appreciated here as I’m a novice ! x😘
Great news that you are stable and dob’t Have to go for the months. I went to our winter home in Florida for 3 moniths and had blood tests here, then I would speak to my oncology nurse and get the okay to continue my ibrance. The gave me my ibrance and letrozole to take along. I am looking forward to going home in two weeks and have some scans done just to make sure everything is stable. This is my first 3 months that I completed each cycle without incident. Also have to have my bone strengthner infusion. What dosage of ibrance are you on? I could not tolerate the 125 so dropped to 75. I just need to know that it is doing its job
Great news! I am based in the UK and I see Onc one month and Pharmacist another. PET scan once a year. I still have to do blood test before Ibrance , though. I think this is the protocol in UK.
I’m stable also. I have the usual monthly bloods, I get a telephone call to confirm all is ok and then I restart my next cycle. I see the oncology nurse every 2 months and the oncologist every 3-6 months. I have 3 monthly CT’s, annual Bone Scans and 6 monthly Zometa infusions.
I have a wonderful team and my oncologist is not only exceptional but a gentleman to boot. He’s always at the end of the phone if I need him.
The aim is to reduce the nurse visit to every 3 months if I remain stable.
I would see this as best practice. The break is great so enjoy it 🙂
I never answered in relation to COVID-19. I’m not overly worried at the moment. Good hand hygiene is key. I will be staying away from large crowds and parades but needs must.
Great News!! ENJOY !!!! I go every 4 months and think that's too much. I dread the thought of having to go 1 or 2 months. I and my husband where one of those people who never went to the doctor. I think it must be get even time. Between the two of us seems we are there all the time now.
Yes. It’s not nice to have the weight of the visits as well as the illness. But I still feel lucky that I/we have such great options for this lifesaving medication. Long may it last. Even the intrusion of those annoying visits. 🥴🤔
I just moved my visits from 6 weeks to 9 weeks. (My treatments are every 3 weeks.) So every other treatment day I also saw the Onc. It was a lot especially with working full time and being worried about getting back in time to teach my classes. And to be quite honest we were just shooting the breeze. My mets have been stable for almost 4 years now. So I’ve been on the same treatment the whole time. (Not that I’m complaining! I know it could be worse)
Great news! Enjoy the extended time between visits.
Hi Timtam,
That sounds like good news to me! Having a longer break between visits with your oncologist can only be a good thing in my book. When I saw my oncologist in February I asked if I could have CT scans and see her every four months instead of every three and she agreed. My scans were stable, which was probably a contributing factor. If there had been progression she may have wanted to see me more often. But I find it liberating. It's one less CT scan a year and one less consultation with my oncologist.
All I’m thinking is WOOHOO FOR YOU!! Such great news!! 👍👍❤️❤️🙏🏻🙏🏻
I'm thinking I have advanced breast cancer in my lungs and in my spine and that is enough to think about. I'm thinking I would not let cancer rule my life and that I would try and take these good days I am having and enjoy them and not worry and ruin the present by wondering/thinking/assuming/worrying about what may or may not happen. (I tend to "overthink" things and quite frankly, I worry about the small issues more than I do the large issues, like CT scans and such.)
Am I going to lock myself in the apt. and never go out and socialize and/or have fun? No, due to some circumstances, I have been stuck in my not so large apt. for months and now I intend to do as much as I can outside that my pain issue has been addressed and "catch up on living my life".
More people have died from the "flu" in US this year. " (As reported from the CDC.) So far this flu season, 16,000 Americans have died from flu, according to the CDC." The FLU, not the virus.
I am NOT going to get my news about the corona virus from a forum board, from AOL, from Dr. Phil or Dr. Oz, from any of my friends who tell me "somebody told me that they know somebody that..........".
I will listen to what the The Centers for Disease Control and Prevention state on a daily basis and will not post or spread unfounded rumors that just enhance the fear people are already facing.
To me the symptoms are almost like what I feel like on a daily basis. I will just do as they say. The CDC state that masks are really useless and it seems they keep repeating the same information. Carry some kind of hand sanitizer OR a small bar of soap (in a small zip-lock bag and a bottle of water to wash your hands when outside and I will try NOT to touch my face with my hands. That seems to be what they are stressing the most. Wash, wash, wash your hands and then wash again and DO not touch your face alot with your hands.
Other than that, I will continue to continue my regular routine. Today, I am taking public transportation in Brooklyn to go shopping for food. Other than following the guidelines of what the CDC says to to do, I will just live my life each day.
17 people have died in US from the virus and 327.2 million live in the US so when you look at those numbers, realize it is a relatively small amount of people that have died from this virus and the ones who did, were not in good health to begin with.
And be thankful we live in the US where we have access to great medical care. I do feel for the homeless in the US and hope they have certain non-profit groups who are keeping them informed and are able to give them soap and other items they will also need.
Some things are out of our control, so I will follow whatever advice the CDC states and unless the CDC suggest other methods to follow to avoid getting it, and that is it.
Now, congrats on your news about your CT scan and the fact that now you can lessen the amounts of visits you have to go to for your cancer. That is great news so enjoy that news and celebrate that. That is great news and no need to diminish that by fearing something that in reality, it appears, most of us have a small chance of catching.
So happy to hear when one has been given good news about their cancer status and it's great news that you now have less of a need to see your doctor as often as you have been seeing them. ENJOY and CELEBRATE that fact. Really, there is nothing more we can do. I wish you continued success in your future with your scans. It is what we all want to hear so very happy for you!
I dropped to seeing Onc every 3 months but still have bloods done monthly and see chemo nurses for denosumab. Great news on stable disease, so pleased for you. Me too, had results last Monday. Xx
Agreed. Follow the procedures that the CDC are recommending (and they even said masks are not effective) and listen to any updates from the CDC and do not get your information from aol or some friend who heard.....or some new food that can ensure we do not get it. People frequently post things how about to fight certain diseases or whatever. So just follow the basic instructions, Wash your hands frequently and do not touch your face with your hands and that is it.
Quite frankly, since I have mets in the lungs, the Corona Virus symptoms are those I feel every day. And be grateful to those in the medical field who have to face daily dealing with the public, as do many other jobs also.
I wonder how long it will take from some "doctor" or somebody with no real medical experience to publish a book on how to avoid getting it by some ridiculous methods by eating certain foods, taking supplements, etc.
Be thankful that we live in the US and have some of the best medicare care here in the world. I am aware of that every day and grateful that I was privileged and lucky enough to be born here.
TimTam!!! I logged on this evening after not being on for a while and am so happy to read your post!! 😀 Such great news! I really could not be happier for you...It sounds like your docs think your disease is well under control, which must be so comforting. And the freedom that brings..woo hoo!
You ask if this has happened to anyone else...Yes, it did to me, at my "peak" period of great response, about two years in. I was free to decide when I'd do labs and even scans (within reason!)...I've always liked to have the info, so did not push the limits on them...
But, more importantly for you, I think, is that it really does bode well for you...the likelihood that you'll continue to do well for a long time has just increased! Definitely reason to celebrate!
I'm sure that even if you have to stay put, you'll find wonderful ways to enjoy your freedom from medical things...
Thanks for sharing!
Lynn
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Oh, I just realized that folks have been discussing (I think?) frequency of meeting with the onc? I do that every 3-5 months, always have. If I have a scan, I meet afterwards. If my labs look troublesome (tumor markers increasing) I'll get a scan at 3 months; absent that, 4-5 months, maybe a bit longer if I drag my heels. I do labs and of course Faslo every 28 days. But I see the doc as infrequently as possible...I find it stressful so avoid it!
I had to come off Denosumab for 8months as I had a tooth extraction gone wrong. I was told it’s more important to have the Letrozole and Ibrance. Denosumab is just something extra to help against Osteoporosis. I was also told it stays in our body for a very long time. So, on that note it’s really good news for you and it’s great all is well. We have decided not to go to Poland in May and Northern Italy in early October. We will lose our flight costs but health is more important. There will always be another time. Take care and keep up those positive vibes.
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Bad mri result
Good news
Melt down 
Once visits only every two months not monthly. 
