Hi
Went for blood test today. I’ve just received a call not to go to my scheduled hospital appointment tomorrow. The oncologist will ring me around my scheduled appointment time. I am not sure how I will get my Denosumab injection & palbociclib. I’m not too concerned about missing the injection. I do however want to avoid any breaks in my palbociclib as I am currently doing so well on it. I’m sure my questions will be answered tomorrow.
Take care & stay safe.
Jo xx
Hi Jo,
I hope everything works out for you tomorrow. I can understand your concerns, as I feel the same way.
Like you, I am wondering whether any of my upcoming appointments will be cancelled. My zoladex injection is due in 14th April (I'm confident that will still go ahead) and then on 17th April I'm due my zometa infusion. I called the oncology nurses last Tuesday and left a message, but have not yet heard anything back. I'll give them until tomorrow and try again. I don't mind if my next appointment with my oncologist is over the phone, provided I can still have my CT scan.
I understand that the NHS is stretched at the moment as they deal with the coronavirus, but we should not miss out on any of our treatments and appointments because of that. Our lives matter too.
Sophie ❤
Are you having a telephone consultation?.. I had one on Wednesday to discuss my scan results
Better than nothing I suppose
I did ask the nurse re forthcoming treatments and she said nothing had changed
I would rather have a telephone consultation tbh as my oncologist works in a huge hospital in Nottingham and is likely to be in contact with people with the virus
My friend has a son who is a doctor on the pulmonary ward and could get it so he’s living on his own and his wife and baby are staying with my friend...awful for them but my friends hubby has stage 4 prostate cancer
Barb xx
Hi Barb,
That's good you still had an appointment and that it did not get cancelled.
I don't know if I am having a phone consultation or not. I'm not due a CT scan until June, and my appointment with my oncologist is scheduled for 15th June. I'm just thinking ahead and wondering if anything will change from now until then. I don't mind if my oncologist calls me, but if my CT scan gets cancelled then I imagine my appointment with her will be too as there won't be any point to our consultation with no results to share.
Oh, Barb! What a terrible situation for your friends. I am so sorry. I hope everything works out for them.
Sophie x
I had my ct scan brought forward a couple of weeks ( at my request , as I hadn’t had one scheduled for 8 months since last July and I was concerned that my April one could be put off if NHS becomes overstretched ). I got my result a week later ( rather than the usual two weeks ) . My onc rang me with the good news on Friday to tell me that I am still stable ! She did say she was already working flat out in preparation , so I really appreciated that she rang me . But no more appointments for me now at hospital for a few months . My onc is doing ‘virtual clinic ‘ for those that need them . Ps I didn’t ring ... I emailed the oncology secretaries ! Take care! x
Congratulations on a stable result 👏💐🎈!!! ❤️🙏❤️
Thank you. Stay safe ! x
Hi Teddie,
That's good. Your oncologist must be very happy with you to not schedule a CT scan for so long. Congratulations on your stable scan results! It sounds like your oncologist is working flat out. I imagine mine probably is too. I will chase up the call I made last week, but I will be understanding, as I am sure our consultants are flat out with their patients. I have tried emailing my oncologist's secretary before and got nowhere with that. She completely ignored my message. I have spoken to her on the phone a few times and she was a little prickly. So I would prefer to deal with the oncology nurses, or my oncologist herself rather than with her.
Take care,
Sophie x
Yes Sophie , my ct scans are usually 6-9 months ...on the positive side my onc ( whom I trust and like ) , doesn’t want me to have too many / too much exposure , when I have been stable and feel well with no pain , and have no evidence of active disease ... but then you worry if something could get missed , if not done frequently ... can’t win can we ?! But if it wasn’t for this virus , I would be celebrating !! Hope you get yours in June , but go by how you feel too ! x
She should get a different job!!! My oncologist secretary always emails or phoned me back the same day...that’s how it should be
Barb xx
Hi Barb,
Yes, maybe! Or I may have just caught her on a bad day. Although she was rude to me another time I called up asking why I had not been booked in for a CT scan. I had just got off the phone to the radiology department and they had said no referral had been put through from the oncology department, so I was just chasing it up. She soon changed her tune when I politely explained everything, but her initial response was quite hostile.
Sophie x
Happy for your reults!
Thank you . Keep safe ! x
Brilliant that you’re stable...hopefully for a very long time
Barb xx
Thank you!
Hope you are able to get to see the horses safely ...but avoiding the humans !!!! I have a new hobby ... my e-bike , Princess Leia !! ...and go out on her most dry days for a few miles , out in the countryside near my home , passing horses in the fields on my way. Loving it , as it can be as easy or difficult a ride as you want it to be ! Keep safe ! x
I'm due for bloodwork and Faslodex shots on April 14th also Sophie.
Called my cancer center to see if appt still scheduled. They said they will call me as the date gets closer. They said they are watching week to week.
Let's hope. Ya know, I'm scared to go, but also scared not to go! Damn!
Hi Marianne,
I hope you get to have your appointments too.
I finally heard back from one of my oncology nurses today. She said as things stand I am still going to have my zometa infusion on the 17th and that if I don't see my oncologist in person in June that she will call me. With regard to my CT scan, she said she had heard the radiology department may cancel non-urgent scans. I would have thought that means our appointments can still go ahead, as they are needed to see how we are getting on. I should still be having my zoladex injection in a fortnight. I don't want anything to change! I'm scared to not go! I don't want any cancellations!
Sophie x
I know!
Missing a Zometa infusion is probably not going to make any difference in the long run. It has a very very very long half life so your body will still have a good amount of it from previous infusions.. I don't remember exactly what the half life is but it is in months rather than the hours that most drugs have.
Hi,
Yes, I was thinking that in the grander scheme of things missing my next scheduled zometa infusion will probably not harm me. But the point I was trying to make is that I don't think it's right that we should have any of our cancer treatments interrupted, postponed or cancelled. I know that it's important to treat patients who have sadly contracted coronavirus, but we should continue to receive our treatments too. We are no less important.
Sophie
My scans have been cancelled this month. I will have a phone consult after I have my blood test today. I have been told not to go to Univ of Mich site for usual blood test but to a satellite site. I will wear a double mask and gloves also will take paper towels to open any doors and then put in plastic bag which I will carry with me will take nothing inside with me except identification which I will keep in pocket will also use hand sanitizer after having to touch anything. I will try to get in as soon after opening as I suppose there will be less germs at that time. My best wishes to all who find it necessary to go out.
It sounds like you are well prepared for your upcoming blood test. I have a feeling my CT scan in June will be cancelled, unless things improve before then. The hospital where I go is currently treating 12 patients who have contracted COVID-19.
Sophie
Yes I believe most are being cancelled unless it is critical you have scans. Stay safe.
I called the radiology department earlier and was told they are not making any new appointments at the moment, but are taking things day by day. So who knows what the situation will be like in June? I'll just have to wait and see. I hope you stay safe too!
Sophie
I live in NY and I cancelled my appt. three weeks ago bc of the virus threat but my onco actually called me and told me I need to get my injections. So now this Thursday I am scheduled to go and get blood work, meeting with onco and my falsodex and xvega injections.
I was expecting them to cancel but they are not. But I do not go to a hospital, I go to a cancer center so wonder if that is the difference.
I had an appt. this week with my onco, injections, and pain care specialist all in the same cancer center. They, in the past, and up to my last visit over a month ago, sent me emails reminders and automated phone calls which stopped.
I just tried calling my pain specialist (only my fourth visit this would be) and all she says is that she will no longer be there for the FORESEEABLE FUTURE, nor will she be able to respond to any messages left and to TRY and reach your oncologist for any medications you may need.
I can't reach my onco or anybody. This is so bad. I have a sinking feeling that my cancer treatment is going to come to a sudden halt (at least the injections, blood work and CT scans).
I am in Brooklyn, NY where it is out of control here. I am scared. I think my treatment is over.
Today, just now. Gov. announced we have in NY ONLY 1,000 DEATHS. It is so out of control here but if doctors are infected and technicians, my cancer treatment is done.
They more or less said unless you have the virus in full symptom mode, don't even try going to a hospital.
Scared, I am very scared.
We are all scared.
We jumped up in about three days from 356 deaths to now 1,100 deaths and that is just in NYC, not counting the deaths in whole state of NY.
Do you live in NY?
I hope other states in US are seeing and hearing what is going on here and that they listen to what their officials are telling them and to start quarantining now otherwise they will become just like NY.
I live in CT. We have over 2,000 confirmed cases, 404 people hospitalized and hundreds of deaths. We are a small state
The scary part is how quickly the numbers rose to this point!
Hello Jo ! Just been to my local hospital this afternoon , for the last time for the next few months ... had my bloods done in a fairly empty chemo ward ( nurse had her mask / apron and gloves on !) and was issued with my 29th cycle of Ibrance / Letrozole from there .
I have an appointment for next month’s bloods to be done at my local GP practise ( which is closed doors for everything other than urgent phlebotomy with an appointment ) . Then my usual local hospital will deliver (via the hospital’s delivery service) to my home Ibrance / Letrozole . (I don’t have any injections ) . I’m happy with that as don’t want to be around hospitals in the coming weeks ! Hope you get sorted ! x
My wife's in the same position. Her oncologist is only doing telephone conversations at the moment, but he was able to get the hospital pharmacy to deliver her Denosumab injections (a 3-month supply) & Ibrance tablets (3 week packet). District nurses are coming to administer the injections and do bloods. Sadly, my wife is currently bed-bound due to other problems (she had a mild stroke a month back and has reacted badly to her new meds for that), so maybe that's why her consultant was able to go the extra mile for us, or maybe if you ask, they can do the same for you?
I'm so sorry to hear that your wife is currently bed-bound also. No, NY does not have resources to have nurses going around to just give people like me injections. They are needed at the hospitals and I get it. I don't think missing some injections is going to make much of a difference. It's odd. Thinking I would rather have the cancer spread then catch the virus because I have severe respiratory issues with mets in the lungs so I Just feel I would not be coming home.
I long for the days (which seems like years ago) when all I had to worry about was the cancer.
No, I can see why they would come to do that for your wife. The nurses are needed elsewhere and in special cases like for your wife. So far about 14 days quarantine. I lost count but you develop a fear of even going out (or at least I did).
I hope your wife starts to feel better and it's good to know that they are reaching out to people who are more desperate positions than myself.
Thank you for your kind reply. I know what you mean about cancer being the only thing we had to worry about... I really hope things start to improve in NY soon. I should have said that we live in the UK, so treatment options might be different over here anyway. Try not to worry; my wife had to miss her injections while she was in hospital last month recovering from her stroke. Her oncologist didn't seem to think it would make any difference. Had to stop the Ibrance for a month too, but she has just started her 3-week cycle again. The hospital put her on Ramipril and she had a bad reaction to it (coughing, breathlessness and hives), which has left her very weak. Stopped the drug a couple of weeks ago but I believe it remains in the system for around 3 weeks, so hoping things improve over the next few days. Not that she can go anywhere anyway...we're in lockdown for another 10 weeks yet. Take care.
Hi Jo I had my denusumab and zoledex last Tues but not having next ones for 3 months ad I am stable. They posted 3 months of ibrance and letrozole so continuing on those, telephone onc appt was ok. Wish you all the best hope it goes well. Tracey xx
I am in US and found out yesterday that my cancer center is only allowing people who need chemo to come in. They are trying to avoid having as many patients as possible. I am not concerned about the injections, but here in the US, we get our chemo meds mailed to us by a specialty pharmacy. No onco gives them out so as long as I have the meds, I will feel okay.
Hopefully, they will realize people like us still at least needs our medication and quite possibly it could be federal expressed to you.
Three days ago we had 356 deaths in NYC alone (38,000 infected thus far in whole state of NY). Today it is 1,000 deaths primarily in NYC and the boros alone. That is in 3 days' time.
Also, my pain specialist who now does palliative care but did hospice for years at another hospital has been pulled from the cancer center "for the foreseeable future" and will no longer be responding to emails or any messages left for her and that going forward, we will have to have our oncos write out our pain meds. I know my onco will not want to do that bc she has no backbone.
We normally have to, here in the US, be physically seen by a doctor to get any opiate prescription, so not sure if they are easing up a bit due to this crisis now otherwise in less than two weeks' time I will be back in pain again.
Starting to wean slowly off the pain medication and knowing what lies ahead.
Scary how fast this virus is taking people.
I would think they would mail them to you. They cannot stop giving you the meds. Bad enough none of us will be getting our injections so we have to have some protection.
Every day I feel more and more fearful. Every day things are changing constantly in NY and its just too much.
Good luck! I am concerned as well about maybe missing treatment! Let us know!
I would only be missing the injections. I get my verzenio from ordering online and just got my order last week (even though I have not finished my current order).
I think I can go a few months without my injections. At least I am getting the medication. I am scared that I will now be cut off from the pain medication. It made such a difference.
I am hoping (but not sure) if NY will lessen the restrictions. A doctor usually has to see you physically in person to prescribe opiate pain meds. They cannot give refills.
Due to the situation, I am hoping that they will allow those who are already on pain medication to talk to their onco over the phone and allow them to still call the pain meds into the pharmacy.
I imagine there are hundreds of people at the cancer center that require them to have some semblance of life. I am starting to wean myself off them bc I just feel I may not get them. There are always people worse off than myself.
Something I've learned over the years that I've spent with this blasted mbc is that onc's vary alot in things like how often they see patients, how often they order scans, and in how much anxiety they have about our cancers! I've done very well and my first and long time onc had me going months sometimes even years between scans. Once we realized that I was doing well, she stopped ordering scans by the calendar and did they only when I had symptoms of possible progression. Much of our individual cancer journies is highly individual, so what works for one of us doesn't work for all of us, so I know not everybody will do well iwth that approach, but if you have had long periods of stability, you don't have to immediately jump on each little thing that could be cancer related. For many of us who don't have rip roaring aggressive cancer cells, a slow approach will work well in the long run. Personally, I have known when I have had each progression. My body just tells me. There is something "off." I'm sure that isn't true for all of us, but it is for quite few of us. Right now, I would rather have a telephone talk with my onc than go in to see her. She sees patients at our small town hospital along with other staff from a good cancer center 50 miles away. I do have to go in for Xgeva shots and to have my port flushed and can usually get appts for that firsst thing in the morning. At 74 years of age and with this cancer plus compromised lungs, frnakly I am more scared of the coronavirus than the cancer!
I was on my 44th cycle of Ibrance and am choosing to temporarily go off of it so that my absolute nutrophil numbers will be higher. That is what fights infection and I am continuing letrozole. I just want my immune system to be as strong as possible with this Covid-19 is out there. I recently lost a friend to this virus who had metastatic breast cancer. Stay safe.
Hi Partia,
I'm so sorry to hear about your friend. This dreadful virus does not discriminate. A 13-year-old boy became the youngest person in the UK to die so far. According to the news he didn't have any underlying health issues. We all need to take precautions.
Take care,
Sophie ❤
That is terribly sad...take care
Update: It has been a while!
5/2 alternative schedule for ibrance study
Since you Mets Dx, what has changed?
