Hi ladies
Has anyone had their treatment postponed due to virus was going to start anfintor 2day but they phoned and said the were postponing treatment I am so nervous not to start coz have had progression to my liver so was keen to get going . Dont know how long for xx
Hi,
Is affinitor a pill or is it taken as an injection or infusion? I was just thinking that if it’s a pill I would push to get the prescription and start it. As it’s Friday now I would wait until Monday morning and get right on the phone to your oncologist or oncology nurses.
I find this postponement of some cancer treatments unacceptable. I know not everyone agrees, but I feel that our treatments should continue. At our stage we need all the help we can get to stay stable and reasonably healthy. A short postponement will hopefully not make much difference, but it shouldn’t go on for too long. Let us know how you get on. I’m in fighter mode lately!
Sophie
Thank you for your reply yes just the pills but I'm afraid to challenge them xx
Dear Nannymop,
My gosh, challenge away! 
In my limited experience, when you challenge them, they notice you, which is a good thing! If your doc doesn't like challenges, find a new one. If your nurse doesn't, tell the doc! I am definitely a challenging patient, but my main doc has all but told me that I'm her best patient, directly as a result, i.e. I advocate for myself, bring up good questions, etc.
Do some of the staff maybe dislike me? Probably. Do I care? Not for a second.
My feeling is, this is about my LIFE...I'm managing things, my docs are wonderful experts I hire, much like I hire an accountant or attorney, which is true whether they're paid through private insurance that I pay for or government programs that I or my family or my community pay for/have paid for!!!
Please take care, be well,
Lynn
Hi Lynn,
I think we have the same approach! I am probably known as “that patient “ too as I question everything and push for results. I’ve disagreed with doctors and nurses on a number of occasions, and got what I wanted most times. I’m not a bully. But I always remember that this is my life and my body that I am trying to help and nurture.
The way I look at it, the doctors and nurses are facilitators in helping me to get the treatment I need to stay alive. I respect them for that. But they are not perfect and are still human. At the end of the day, this is their job and they can leave it all behind when they go home. But we have to live with the consequences of their decisions and our disease. So if I feel that something is not right I am very vocal about it. I expect to be heard, even if they don’t always agree with me.
Right, I am stepping down off my soapbox and finishing my cup of tea.
Have a great weekend!
Sophie 😁
You’re welcome. I know it isn’t easy to challenge the doctors and nurses, but this is your health at stake. Perhaps a delay won’t make much difference. But why delay starting your new treatment?
As affinitor comes in pill form, I don’t see why your doctor can’t write the prescription and let you get started. I understand that our medical team are under a lot of pressure due to this coronavirus, but I have not had any treatments or appointments cancelled since this whole thing started. Instead, the phlebotomist, my GP, and nurses I’ve seen recently have all been wearing protective gear while they have been treating me.
If you are worried about directly challenging them, can you ask someone whom you trust to advocate for you? At the very least, I would want to know the reasons for the delay (perhaps it’s more to do with your health than coronavirus) and push to get started if you feel that you are not given a good reason to delay.
Please let us know how you get on next week. I feel very strongly about this.
Sophie ❤️
Same for me Sophie except nobody was wearing gloves or masks...just normal set up...there was someone from the kitchen dishing out food as well
Barb xx
That’s a bit worrying, Barb. You would think that all hospital staff would be wearing protective gear. I hope you’re enjoying your day. I’m just tucking into a takeaway lunch. I relax my diet over the weekend.
Sophie ❤️
Well the cancer part is separate from the main building so I’m not bothered if they’re not wearing masks etc...there’s hand sanitizer there so you can clean your hands
Hope your lunch was good...did you have a glass of wine?
Barb xx
Hi Barb,
I'm glad there is hand sanitiser and you feel safe.
Lunch was a Charley's sandwich, chips and lemonade! Then I had barbecued potatoes, onion and garlic with homemade Mexican rice this evening, with yoghurt and chocolate. Oh and I made a cooked breakfast! I'll go back to being good on Monday! 😂😂
Sophie ❤
I was on Faslodex injections but my oncologist changed me to Femara which are tablets so I can continue with my treatment.
Hi,
I was supposed to start Letrozole and Ibrance, they started the letrozole but not Ibrance at the moment. I had a stable scan beginning of March after a really hard 6 months of various issues. My Onco has assured me they will start it as soon as it’s viable and there are lots of different combos if letrozole alone isn’t working. 😀
I was on afinitor from September to December and while I was on it my blood counts came up to near normal levels.
Please don't be afraid to challenge your medical staff. We are brought up to accept what doctors tell us but I've learnt that with oncology treatment they tend to follow a one size fits all approach and it never hurts to question a decision. At least you understand the reasoning behind it.
I have my oncology appointment next week and if there is any hint that my treatment will be delayed I can feel a champaign coming on. Realistically we are looking at next spring before a vaccine is available and things can start to get back to normal. I'm not prepared to be off treatment for that long, I'd rather take my chance with the virus and a lowered immune system. But it's a personal decision for everyone of us.
Hi, Nannymop! I agree with all the others that it's important to get answers to your questions. Especially with something as serious as progression to the liver, I would want to make sure I knew exactly what was going on and felt comfortable with the answers.
I also wanted to let you know that you are not alone in having treatment postponed. I am a patient on clinical trial at a hospital in Boston, and right now I'm getting my labs done locally at my PCP's medical facility, meeting w/my medical oncologist via phone, and getting my trial drug shipped to me via FedEx.
I was supposed to get scans at the end of this month, but they are trying to keep as many people out of the hospital as possible, so they have been postponed until the end of May.
I have been somewhat nervous about this, because my CA 15-3 tumor marker has been going up by leaps and bounds since December and climbed 20 points in 27 days last month, but my scans still looked very good at the beginning of March, so the hope is that if there is progression, it is only minimal.
As much as I wish this delay was not happening at this time, I will have to live with the discomfort for a while longer. Also, even if I could get scans at the end of this month and they showed progression, I would not be able to enter another trial at my hospital anyway, because the clinical research program is currently shutdown.
I wish you all the best! Please let us know what you learn next week.
Thank you all for your words of wisdom I wish I could speak out more lol I have an appointment next thur so going to write down a,few questions so if anybody got any tips or how I should approach it I would be very grateful. I have been metastatic since dec 2017 went on ibrance and letrozole but it stopped working last month. I'm 55 with 3 children and 4 grandchildren so very blessed still work full time and lived a near normal life for the last 25 months trying all I can to stay positive .just hoping they wont give up on me just feel a bit lost at the moment . My heart breaks not cing everyone if ever I needed my nanny cuddles it has been this week xx is this a movie or real life ???
Yes I am on Ibrance and have had all my treatment stopped except for Letrazole looks like for three months not heard from anyone since they stopped it over month ago I am also worried
Hi
I’m on Afinitor and exemastane and popped into the hospital to pick them up last month and will do so next week...I had my bloods done and my denosumab injection on the same day...there were patients in there having chemo etc
I would demand (not ask) for your pills to be sent to you if they don’t want you calling in...it’s ridiculous that you should not have your meds and above all to have to worry about missing your treatment
Barb xx
Thanks barb I will ask again next week . How are you doing on the new treatment have your markers come down at all . I have started the exemestane but wont let me have anfinitor I can cope with a month but if it is delayed any longer i know i will be scared. Was lovely to see you taking bugsy out for a trot xx
Hi there
I’m doing ok on the new treatment but it’s hard to know as I had my gall bladder out in March so the markers won’t be accurate and I felt rubbish after the op but now I’ve definitely perked up
I’m taking the 7.5 mg dose of Afinitor (at my request)... main issue is anaemia so I’ve had an iron infusion...however I had those when on Ibrance so I can’t blame the new drug for that
All in all I’m doing good...will know more after next scan
All the best
Barb xx
Hello beautiful ladies 🌺❤️🌹. When a new ibrance cycle started, the doctor called me and told me to stop it. He also told me that it was so that my immune system values would rise and I would have less risk. This past Monday he called me and told me to start it. Do not take it for 1 month and 1 week. Likewise they sent me the injection of Zoladex. They planned my pet scan for May, it must have been in March. My doctor did not want me to go to the hospital. I have not had laboratory tests either. In the middle, take advantage of removing a wisdom tooth with caries since for dental work you must stop the Ibrance. Thank God everything went well. Remember I live in Houston and the hospital I attend is one of the largest. I guess that was the reason. Do not worry that God does not abandon us 🙏🌺😍
Hello Maludagui. I hope you do well by taking a rest phase, I think you have a smart doctor.
I take Ibrance also. And I am starting my rest phase tomorrow from Ibrance. I am 21 days on the drug and 7 days rest so my immune system can bounce back. I have been on this medication for 10 months and doing quite well but would like to go off it for a few months. I have a CAT scan in early June and after that I have a telehealth conference with my Oncologist and so will ask her if it would be wise to take a break from the drug. I am a bit concerned because the drug seems to affect my balance. I also have osteoporosis so I am terrified of falling and breaking something. Other wise I feel quite good. I do get colds easily but I also get over them quickly so that is a good thing. By the way I also take Letrozole daily. I hope all these drugs help me heal. I think of all of you women suffering from this illness and pray we will all regain our health. They say we don't heal from MBC. don't I don't believe that. I believe if we want to heal we will heal. I have made some dietary changes and believe they will help me. By the way, if you have access to stinging nettle it makes a healing tea and is supposed to kill breast cancer cells. My doctor would laugh at that but I believe it. I believe natural plants do have a lot of healing properties - that in many cases - we are now just discovering. So I now drink one or two cups of the stinging nettle brew a day. It grows on my property but the health food stores likely have dried nettle. Hugs Marlene
I was lucky hospital posted my ibrance out so have 3 months of them, but not having zoledex or denusumab till end of June. I am slightly worried about not having zoledex till June had last one end of march. I am on ibrance, letrozole, zoledex and denusumab. All the best to you xx
Hi Tracey,
Can you ask to have your zoladex at your local doctor's surgery if you don't already have it there? Or can you have it prescribed and inject yourself? Zoladex is one of the drugs on my repeat prescription list, so in theory I could ask for it to be prescribed and inject myself. I am not saying I would be happy to do it myself, but if I didn't have any other choice I would do it. I had my zoladex as normal last Tuesday. I would push to have it one way or another.
Take care,
Sophie ❤
I am going to ring up tommorrow and ask if I can do it myself or at very least at gp, I had it march 24th so should be able to get it on time if they prescribe it
I think that is a good idea. The thought of missing a zoladex injection scares me, as I don’t want my periods to return, along with oestrogen production that fuels my cancer. I’m sure you feel the same way. If your GP doesn’t want you going to the surgery I would insist on having it prescribed. There are videos on YouTube about how to administer zoladex. Just make sure you get some numbing gel too. Please let me know how you get on. I hope you can get it done this week.
Sophie
I used to inject in my tummy when I had chemo last time, so should know what I'm doing. Last time I went to gp nurse had mask and gloves on and there were only 3 in surgery everyone was keeping away from everyone else so would be relaxed about going again
That’s even better then if you have prior experience injecting yourself. My doctor’s surgery was the same way when I stopped by last Tuesday. I was happy to attend my appointment, as all necessary precautions were taken. I had my temperature taken and I had to answer some questions before I was given a mask and escorted in to see my GP.
Sophie
Hi Kiera
Just thought you would like to know. I go to my gp surgery to have my Zoladex injection. I have it done in the car park at the moment.
We need it to make us post-menopausal so we can have the other medications, so it is very important to get the injection.
Clare
I’ve done zoladex injections years ago when I had primary cancer when I was 40 yrs...dead easy...there’s really no need for anyone to miss out on their treatment
Barb xx
Morning Barb,
I agree that no one should miss their appointments if at all possible.
Sophie ❤️
I think you need a very good explanation as to why they are cancelling your treatment. We all need our medications or so we are lead to believe. So if they believe the medication is keeping you healthy then I think it is very wrong to cancel it. You should try to discover what is going on and then insist on your rights as a cancer patient to be allowed to start your treatment. Days and weeks probably matter when it comes to cancer. I hope everything works out for you. You sure don't need any extra stress. This virus is enough of a worry. All the best. Hugs Marlene
My oncologist was ready to postpone my scans for 6-8 weeks thinking we would be past the peak of COVID-19 by them. I had a telehealth visit with my primary care physician and she said you need to go in now because we really don't know what will happen in 6-8 weeks. A lot of patients had cancelled their scans so it was relatively easy to get them re-scheduled. However, the hospital was really eerie. No visitors are allowed so I went by myself. I had to have a temperature check and answer a bunch of questions before I was allowed in. I tried to stay away from everyone while I had the CT scan and Nuclear Bone Medicine scan. I was there approximately 4 hours, and so far I have not contracted the virus. However, the results were unexpected and like you things have spread to my liver, so I am now on Xeloda. Will be seeing the oncologist again in a month and then another set of scans in two months. I am grateful for the intervention of my primary care physician because I really don't know what would have happened if the scans were pushed back by several months.
Exelixis Clinical trial XL091 pill and Tecentriq (Atezolizumab)
Enhertu
enhertu
progressed on xeloda to Doxil…some fun things that happened on the way… with pictures… 
