Telephone Appt

[Kiera49]

Just had a call about my oncology appointment they said that they are going to do it over the phone dont want me to go to hospital, I will be asking her about getting my treatment, blood test and meds. Has anyone else had this. Many thanks

[Hidden]

May I ask where you live?

Nobody has contacted me directly from the cancer center (I have appt. on 3/19 for blood work, injections, meeting with onco). I did receive an email stating that they are taking extra precautions, if you feel sick, dont come in, and that no children under 13 will be allowed in the building. I get it though. Most of us going there have all different types of cancer meaning we all have compromised immune systems, etc. That may change as I get closer to my appt.

I'm thinking that would be a breeding ground. Many of the patients come in with home aides. I am feeling like I may make the choice to skip my injections this month and stay home regardless.

It was warm yesterday here in Brooklyn, today it is very cold. Last time I went out was about six days ago on public transportation to buy food (Thank God I did). Today and I'm hoping its just one of those well yesterday was warm, today is cold kind of things, but I am feeling a little off.

I live alone which may be better, but who really knows. I have it in my lungs and bones. I feel like maybe I am imagining I am coming down with something, on the other hand, I am thinking I was out and went on public transportation six days ago to go food shopping. Some of us have no family and I do not drive, so I had no choice but I felt well enough. I am going to try and relax myself a bit today and hope I am only imagining I feel like I am coming down with something.

[Kiera49 in reply to Hidden]

I'm in the uk. My bus company told me there doing extensive cleaning of buses and coaches and more often. I am a bit like I felt when first diagnosed with cancer sometime I get worried and then I think I am doing everything I can so hopefully be ok . Try not to worry too much but it's natural. I am having a good day been out with dog

[Hidden]

My family doctor called me yesterday I stead of ne coming to the office. She has been heat the whole time with doing phone appointments but she didn’t want me out in all this “chaos “ as she called it. My oncologist appointment is next week and I’m wondering if he will do the same thing.

[Kiera49 in reply to Hidden]

Might do my appt is on weds

[Maludagui]

I went yesterday for my injections and laboratory. They only allowed access to patients, they did tests for fever, saliva and a questionnaire. The entire service was very fast. Be safe 🌺🌹

[Kiera49]

Thanks x I will.

[Kiera49]

Will see what the scan shows hopefully I'm still stable, I only see my onc every 3 months but have treatment every month, so will see what she says

[Gmaoftriplets]

Due for my blood test on Tuesday and my PET scan is still scheduled for March 26,. Havent heard anything from my doctors office to not go.

[Kiera49 in reply to Gmaoftriplets]

Ours said if they dont tell you not to go then you should go. I haven't been told not to go for treatment yet. Good luck xx

[13plus in reply to Gmaoftriplets]

I have PET the same day. Nervous about going in there though

[Kiera49 in reply to 13plus]

I am slightly nervous about going to hospital on Tues as have to use public transport to get there and back but have to go

[Kiera49 in reply to 13plus]

Good luck xx

[Kiera49]

Thank you xx

[Bluebird77]

I am also thinking of just getting my labs done at the local Quest instead of going in to see my oncologist next week . Do you have any thoughts on whether a lab would be risky in terms of germs?

[Duffles]

My oncologist just told me we will have a video appointment so I don’t need to go in for my Monday appointment. However my radiation dr. Wants to examine me and talk in person next week. (I just had an MRI as followup for spinal rads I. December...so now I’m worried!) anyway it is recommended for us not to go if not necessary for a while here in San Francisco.

[Hidden in reply to Duffles]

It's ironic how different cancer centers or hospitals operate. I see you live in US. Here, in NY I go to a cancer center. Everything is located in one building, CT scans are done there, my blood work and my injections and all the oncologists are located there also. I got for CT scans every three months for the past two years.

A technician does the CT scan and the reports are always given to the oncologists within 24 hours. NEVER, does the radiologist doctor ever talk to me. The outcome, no matter what it is, is given to the onco to discuss with me.

I had surgery in 2018 and was off Ibrance for several months. Before I went back to restart treatment again (I was then taken off Ibrance), my onco scheduled me for a breast ultrasound. Because it was a breast ultrasound, that was done at the Breast Cancer Center which is right around the corner.

I had the ultrasound, then they wanted me to do a mammogram again, and then back to ultrasound so I knew something was up.

Then, the radiologist doctor came in to speak with me and said they found a new cancer tumor in my breast (my original tumor is still there) far from my original one. I ran into the nurse navigator when I was leaving who explained to me when I was first diagnosed at the breast cancer center with stage iv (we thought it was stage 3). After the breast surgeon told me it was now stage iv, the nurse navigator then explained it to me and she took care of all the paperwork for my SSDI (A blessing for sure.)

I was leaving and ran into her and I told her that I had just been told that they found a new tumor in my breast. She said who told you that and I said the radiologist doctor. She was really annoyed and said I am going to speak to her now. But then she left to go speak to her and I left and emailed my onco about what does this mean concerning the new tumor.

I then found out later that the radiologist doctor (who was apparently fairly new) was reprimanded for telling me personally that they had found a new tumor. Obviously, the protocol there was ONLY the onco tells their patient anything. She was not supposed to tell me about it, but was supposed to let my onco know and let my onco give me the news. So they are very strict there about that. So I never even see the radiologist doctor when I have my CT scans. The reports are given to my doctor and she tells me the results.

Interesting, how you have a specific radiologist doctor. I think bc the cancer center is so large that there are several radiologists that examine the scan results and do the reports bc my onco once mentioned that some radiologist doctors are more detailed in their reports than others.

[Duffles in reply to Hidden]

I originally had spinal surgery to remove the large tumor they found in October, 2019. Then I had a doctor oversee the radiation I required on my spine...now I had a “follow-up” MRI and she wants to examine me in person. I go to UCSF Medical Center, which I spread out to 3 different campuses. My oncologist oversees all my different doctors...they seem to work together as a team and consult with each other. I did not even start Ibrance until January...but my blood counts fell so much I stopped for weeks (well stayed on Letrozole) Bone mets progressed so trying Xeloda now. Thats where I am now...and I hope our teams of doctors are working together for us! This virus has complicated everything. I am supposed to self isolate at home...but not sure What that means exactly. Not even family?

[Hidden in reply to Duffles]

Why are they telling you to self-quarantine yourself? Your primary doctor or your oncologist???? I only last three months on Ibrance. The way off I felt like I was going to die and just stayed in bed. I am shocked how people experience totally different experiences. Some ladies were like me, others felt more energy on their week off and others felt the same on their week off as they did on it.

I am now on Verzenio. I could not tolerate the 150 mgs. or 100 mgs. (Verzenio you take twice per day with no breaks). Finally, she lowered me to 50 mgs. 2x per day. OMG...the difference. I no longer feel that horrible fatigue I felt on Ibrance and on the higher Doses of Verzenio I could not leave my home, the diarrhea was so severe. I love being on the 50 mgs. of Verzenio (Okay, may not love it but the best so far). The diarrhea I can manage, I never feel the need to take naps and I dont dread the "week off."

I dont know why they expect you to self-quarantine. I would ask why. I am feeling okay. Went on a bus in Brooklyn, (used Bounty to hold the pole) did my shopping, came home, put everything away and then washed my hands.

I open the doorknob to the garage chute with my shirt, not my hands. Its the little things. Unless, I feel sick, I would then quarantine myself. But I do not feel ill so not planning on doing it.

Its isolating to be alone. I was alone (I live alone and have no family or friends even remotely close by) when I had an operation and for four months could barely move except when I had to go for checkup (wound up in ER) for three months. It is not fun to be alone. It is quite hard so I would ask why. This is going to go on for months. You would go insane.

[Duffles in reply to Hidden]

I’m sorry if I misspoke. It is just the current general recommendation (by CDC, City, State, etc.) all senior centers, large gatherings, and schools are shut down to slow the spread before hospitals are overwhelmed. Medical appointments are sort of up to the doctors and patients I think.

But the governor is recommending we older people with health problems (lower immunity due to treatments) stay home as much as possible, as the prognosis is worse for us, unfortunately.

I am lucky to have family around...but we are even separating ourselves😉

Hoping this isn’t too extended. Glad we can write and express ourselves here!

[Kiera49 in reply to Duffles]

I still go out but not around large crowds I live with my partner and my two boys dont isolate from them but make sure they wash their hands a lot and sanitize when there out. I love taking dog for a walk in fresh air makes me feel good. Wish you all the best. Tracey xx

[Blakeysangel]

I had a my biopsy results over the phone on Thursday. I’m in Birmingham uk.. I have to go and see my Onco on 1st April to start new treatment. My surgeon said it will be the norm at the moment to do things by phone but assured me if I wanted to see her or need to discuss more I could call her or go in.

Ps Biopsy was a mixed bag, 5 positive Axillary lymph nodes and 5 clear, no idea what that means for treatment till I see Onco. 😬😬

[Hidden in reply to Blakeysangel]

Hi there

Keep yourself well until April for the start of your treatment.

Can I ask is this your first cancer? I’m just asking because of the axillary node biopsy as that’s what I had with my initial diagnosis.

Clare xx

[Blakeysangel in reply to Hidden]

Hi,

I originally had my sentinel node taken out in nov 2015, it had a micrometer in it. I had radiotherapy. In June 2018 I was diagnosed stage 4 with lesions to my iliac crest and a single spine met. I’ve been on a trial drug since then until January when they found a swollen lymph node which biopsies as cancer. My Onco after discussion d3cided that we should take the rest out, which was done in Feb..I’m planning on having as little contact in crowds a s possible and just being careful 😀hope your doing well xx

[Blakeysangel in reply to Blakeysangel]

Hate predictive text should be mircomet lol

[Kiera49 in reply to Blakeysangel]

Hi Blakeysangel I live in Kings lynn, norfolk in uk we now have gone for 0 cases to 3 patients getting it in hospital. Government are saying they are going to isolate vulnerable people. Keep safe, wish you well

[Blakeysangel in reply to Kiera49]

I think isolation might drive me mad! Actually it’s not the isolation it’s the untidy hubby! Lol I have a big garden soI will be getting it ready for the summer I also have a few animals,dogs, cat, rabbits and the latest the hubby’s bought home is a canary! Always something to do here so isolation won’t be too bad.

Pip x

[Kiera49 in reply to Blakeysangel]

Maybe put hubby in garden lol I've promised I wont get any more pets, we have 2 dogs, 2 cats but I really miss not having a rabbit

[Blakeysangel in reply to Kiera49]

He’s always in the garden anyway with his Pigeons lol I have 2 dogs, a cat, a canary and 4 Rabbits! Lol x

[Hidden in reply to Blakeysangel]

You did well on the trial drug. What was it called?

There are lots of ladies on here that have been through a good few lines of treatment so you will be moving onto your next one in April.

I was diagnosed with spine and lung mets in April last year. Been on Ibrance and Letrozole since then. Doing ok so far.

Let us know how you get on

Clare x

[Blakeysangel in reply to Hidden]

I had 597 days on the trial drug I was the longest in the trial, my claim to fame lol. It was called STEM SFX01, the trial has finished now and results were good. I’m looking at Ibrance/letrozole as my next treatment. The STEM was my first line for stage 4 so lots of options out there. Are you in the UK?

Pip x

[13plus in reply to Blakeysangel]

Can you tell us anything about this trial drug? The form they give it to you, did you have side effects? Or the science behind the drug?

Wishing you well with next steps !

[Blakeysangel in reply to 13plus]

Hi, I took it with Tamoxifen it kicked it back into action after it had failed. It was a capsule but I believe they are trying to make it in tablet form and the phase 3 trial will try it with Breast cancer patients earlier on in there diagnosis, I think that’s it! The company is called Evgen it has info on there x

[Blakeysangel in reply to Blakeysangel]

Side effects were minimal, a bit of tiredness, a little bit of nausea just in the mornings. The drug is derived from a compound found in broccoli type veg.

[13plus in reply to Blakeysangel]

Wow that’s interesting! Thank you

[Hidden in reply to Blakeysangel]

Hi Pip

What a claim to fame!!! Lots have done well for a long time on the next two drugs, so I’m sure you will do well.

I’m not too far from you, on Anglesey North Wales

Clare x

[Blakeysangel in reply to Hidden]

I love Wales, spent a lot of time on the mid Wales coast when I was a child. We’re always looking for cottages to go to with our 2 dogs, may try Anglesey. Let’s hope the L/I combo works. What are you on Clare? X

[Blakeysangel in reply to Blakeysangel]

Sorry just remembered your on this combo what dose are you on? Xx

[Hidden in reply to Blakeysangel]

Let me know if you decide to come to Anglesey. Lots of great beaches to walk with the dogs.

I’m on the I/L combo with Denosumab (for bone) and Zoladex (menopause) injections. I have some side effects, but nothing that stops me from working and enjoying myself. In fact I feel much better than before I was diagnosed.

X

[Blakeysangel in reply to Hidden]

I will let you know. I have Denosumab aswell. I had a hysterectomy and ovaries removed in December so take nothing else. I don’t work my job kindly pensioned me off 😀apart from that I enjoy life, I’m a lady that lunches lol xx

[Juliebythesea]

Hi, my hospital is in Devon uk. I have been told my oncologist is done appt"s by phone starting next week. I am on weekly taxol chemo patient on week 42 now. Was very panicky about what I do. I have 2 more weekly sessions than a weeks break as been doing this for a year now. The chemo ward will only let the patient in for treatment no carers, or visitors to stop any spread of corona. I went in with gloves on.

[Kiera49]

I thinks that sensible of them I wouldn't mind that, I am in uk also

[hdhonda]

I have an appointment Tuesday to get my cat scan results. No mention of phone appointment. Blessings Hannah

[mariootsi]

I just went to my Cancer Center on Tuesday, March 10th. Have my next appointment in 5 weeks for bloodwork, visit with onc and Faslodex shots. I will see how they handle my next appointment.. By phone or in person.

It seems the worse place to go would be a Cancer Hospital which is a part of Yale New Haven Hospital where there are 3 new cases of patients with Covid 19!

All schools are closed, all universities, all concerts, meeting s and church services are cancelled. Stores are out of supplies. There are no masks N95 available. It's all insane and kind of surreal.

They don't even have toilet paper!

My daughter and I always run errands together on the weekend. She doesn't want me to go out. Her school is closed indefinitely so she isn't working. Senior centers are closed and nursing homes aren't allowing visitors.

[mariootsi in reply to mariootsi]

The state has said that vulnerable people need to isolate!

[Kiera49]

We are the same people going crazy no toilet rolls, no pasta even rationing on biscuits. I am just going out to walk the dog till I have spoke to onc. Our school and colleges are still open but think they will soon and big events are going ahead for now

[PJBinMI]

I just received an e mail from the cancer center where my onc is centered. I see her at a local rural area hospital. The cancer center is now allowing only staff members and patients into the building and asks that anyone with cough, fever, difficulty breathing call before their appt. All that seems reasonable to me, though I wonder what they will do with patients who cannot walk on their own and need somebody to help them along.

[Scandia68]

Hi Sandra

Sounds sensible, are you being treated in the Uk?

[Red1246]

Ah Canada! No wonder the lab system is so well organized.

As I was reading your post I had to wonder where you lived. It sounded very “unAmerican”.😊

I’m glad you’re so well looked after.

I’ll speak with my onco nurse tomorrow and not second-guess how I should behave in the current circumstances.

Given what’s happened in Italy, I’m not prepared to believe everyone is overreacting here. In some cases perhaps, but I think certain precautions are necessary and those of us with neutropenia due to meds, need to be careful. I’ll know tomorrow to what extent.

Take care!

Kathleen