I read a lot here, but don’t post much. I’m nervous about an upcoming Zometa infusion this week.
Last month my oncologist had me hold off on my blood work and Ibrance cycle. Because he didn’t want to expose me to unnecessary probable exposure to the virus. I’ve been stable and on Ibrance since July 2017.
Since March 13, I’ve been working from home. I teach in Los Angeles and that was our last day at campus. I was walking everyday up until last week, there were too many people outside passing us on the walk. My family and I have decided to stay inside.
I’m supposed to get my CT scan this month too.
Are any of you nervous like me to go for treatments and doctors appointments? Am I being paranoid? And if you are going to your doctors/ treatments has anything changed? I’m wondering if I should postpone it. I need to get my port flushed soon though, so I’m thinking I should just go for the treatment.
Thanks for listening. Advice?
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theresac1
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I can understand your concerns. It's not always easy knowing what to do amidst this pandemic.
I would be inclined to carry on with treatments and appointments unless you are told otherwise by your oncologist. I am due my zoladex injection next Tuesday and my zometa infusion the following Friday. My GP told me to still attend for my zoladex appointment next week, provided I do not have any symptoms of the coronavirus. My oncology nurse also said I was not on the list for cancellations, so to still attend for my infusion at the hospital. So I will carry on as normal unless I hear differently.
If you are unsure of what is going on, I would contact your medical team for clarification.
You're welcome, Theresa. I just feel that we should take care of our health. So much of our lives has been disrupted already. The idea of skipping treatments scares and unsettles me.
I was cleared to go in for labs (I realize this is no big deal...) two weeks ago but decided to skip because I pictured myself counting down the days of isolation afterwards until I could "exhale".
I will go in today for Faslo injections since they are clearly more essential.
I would put Zometa somewhere in between...probably closer to labs...i.e. I don't think it's a big deal at all if you wait a month or two assuming you're on a quarterly schedule. My local onc has told me to get the infusions "3 or 4 times a year" and my other, bigger deal onc supports me getting them but made a comment about them not actually being proven to be effective (on some measure?), which confused me but I didn't probe or even research it...I just do them in the hope that they will help and, like, why not do them?
So my thinking is, do what makes you comfortable. And maybe look at the curves/predicted waves for your area. My daughter's in LA and is tracking all of this pretty obsessively (!), so I'd be glad to ask her what she's learned if you'd like me to...
I'm in Dallas, and a quarter mile south of me begins the ZIP code that is the definitive "hotspot" for our area. A warning was issued to avoid even grocery stores or food delivery for the next 10 days, since that's when our "wave" will hit.
I bring this up as an example to say that, with a bit more info, you could probably make an even better informed decision re: the best timing for non-urgent appointments. I'm a big believer in the value of even a small margin of advantage. If you take enough actions that give you even a very small advantage, over time it could lead to a big advantage.
This having been said, I imagine that your real risk is pretty low...
Thank you! I agree looking at the data, and hot spots. etc. Fortunately, the past couple of days California has had good numbers relatively speaking. Stay healthy and safe! Thanks!
Wow, even avoid food Deliveries? We’re in a hotspot in NJ and they never said anything that extreme yet. They just minimize your shopping. Some stores apparently have still had times of being packed which is scary.
It was a physician UTSouthwestern Medical Center who recommended it due to the timing of the spread, I assume to absolutely minimize infection as the wave hits Dallas. As you may have read, politicians in southern and "red" states have tended to minimize /under-react to the threat. I think the medical community is doing its best to offset this.
I'm so surprised by crowded shopping in NJ!! I went to the store yesterday (so I could hunker down completely for 10 days) and there was a managed line outside (6 feet apart) while they allowed only a modest number of people inside the store. Most but not all employees were wearing masks.
Just this morning I received a msg from my daughter about transmission that was apparently via delivery bags/packaging (their only contact with the outside world). Makes sense to me. I don't even touch the mail until it sits on the floor for 3 days.
I know it's a nightmare in Jersey and I'm so sorry about that. I spent my first 35 years in NJ (Bergen and Essex Counties) and NYC and much of my family still lives there, many high-risk.
Please do take care. Hopefully this will get better soon...
Thank you. Not all the stores are the same but it is a very uneven effort across the board. It’s very frustrating. If some can do it , they all should be able to do it.
Mail- argh yes my husband keeps bringing it inside - I need to work on a system for that! Stay safe
Hi Theresa... In typical "perfect timing " style I started weekly chemo taxol pretty much the same week we were ordered to stay at home for 12 weeks! In practice this means going to the hospital twice a week for 3 weeks out of 4.... Having said that I have found it quite safe. The cancer center is literally a ghost town as they have cancelled most face 2 face appointments... Only MDU and blood test centre is manned and they have fully staffed as most research staff has been rerouted there.... A nurse also told me that as they only deal with cancer patients they have found their patients have been more cautious quicker and they only have 2 CV 19 patients on the Ward....They also block entry to friends and family so only patients can go in..So all in all I felt pretty unexposed. Having said that they have also cancelled all zometa infusion for near future so they obviously don't feel it is a priority....
Hi Marie, is that the Marsden you're describing? I've got my scan there next week and am supposed to go back and get bloods done but not have outpatients appointment, no mention of zometa so I suppose it's cancelled. I'm a bit nervous about it as would be using public transport for 2 journeys there and back, while otherwise supposed not to be going outside at all... Doctor I spoke to said she thought the trains would be quiet, which seemed a bit blasé!
Yes it is... I was the same re public transport . I hate driving and usually panic at the view of a roundabout but I decided to give it a go and I now drive there ( it helps that the roads are not busy)....Unhelpfully I have no appointment next week otherwise we could have car pooled...
For blood you just turn up and it literally takes 10mn, no wait and loads of staff..If I were you I would try to do blood before your scan but on the same visit( you might not be able to do it after depending on the scan you get ) ..Worth checking with them, if you explain you have to come by public transport and want to limit the journeys , hopefully they will be sympathetic.... All they need to make sure that your books forms are available at clinic reception....
All a bit mental, thanks for asking! I changed the time of the scan to coincide with having bloods done, then they cancelled the scan but needed me to come in for bloods, hang around outside for 2 hours during processing, then speak to consultant on the phone after which, re-enter hospital and learn how to administer denosumab to replace zometa infusion... I said that was crazy so they let me watch a video on self-injection and sent me out the meds. Going for bloods it was packed though, and they only took temps at the door of the blood room (after over an hour in an overcrowded waiting-room) so I thought there was a good chance I'd pick up the virus. No signs so far, luckily. I've got to go back in a month because my neutrophils were below 1 this time, not great timing!
O no ! So sorry to hear that , it is totally different from my experience... I go there twice a week and it is like a ghost town... Did you have your scan in the end?
Yeah, I think I probably chose the one busy tome to get my bloods. No to scan, they rescheduled for late July. On the plus side, much prefer self-injection at home as with zometa, only about half the staff ever seemed confident about finding a vein 🙄
Your def not paranoid it's hard do you risk getting virus or risk cancer getting worse, everyone at hospital will be going out of their way to protect you so you dont get virus and there wont be many people around. I would go for treatment you need to keep kicking cancers butt so it stays where it is. All the best xx
I live in rural Michigan which I am sure is much less coronavirused that LA, with no public transporation but I can drive to the local hospital where my onc comes once or twice a week in less than ten minutes and see very very few people on the drive and in the hospital, so my decisions are very different than yours. But as a long time metster with bone mets only, I know that Zometa has a very very long half life and missing an infusion or two is usually no big deal. How often are you currently getting Zometa? It's usually not a big deal to skip one--call and talk with an onc nurse who works with your onc. If you are going to be riddled with fear or anxiety if you go, I'd say it isn't worth it. But it's a very personal decision! I have a CT scheduled for later this morning. Called yesterday to ask if the appt was still valid and the rad tech told me she was not telling everyone to keep appts! I laughed and asked if I would get the CT if I showed up and she said yes! I woke up very early and had some breakfast as I have to fast beginning 45 minutes ago. My husband and I have been wearing face masks since last week--we each have had one, just one. Over the weekend, he found two super duper masks out in the pole barn, the kind he wears to protect himself from dust when he is plowing or mowing. So we now each have two masks. I've heard about such shortages even for health care professionals so I asked the rad tech if they had the gear they need she said they do.
Surprising and great to hear. Our little hospital probably uses less in a year than some places in LA use in a week! This craziness continues! My life isn't much different than living with long term cancer fatigue has been, except for the maks and every one else gtrying to take care of themselves, too.
Thank you!! I get monthly infusions. My port needs to be flushed every 30 days so either way I need to go in. I just found out I need to go in today too for my labs. Good luck with your scan!!
I’m kind of in the same boat. I was supposed to go for faslodex shots last Mon but the Thur before it I got a call Out of the blue and told my onc appointment was being cancelled for a month, which was odd because I had had PET at outpatients the day before and talked to docs office the day before that and they had said all was normal!
Two days after the day that had been cancelled i got a call saying “because you missed your appointment we can reschedule”. I wa so utterly confused and I told them “you cancelled” !
Then by the end of the week I started to worry about the peak being closer to a month away, which would mean if I miss that too it would be 3 months between Faslodex and that seems too long??
UGH! Felt like an idiot but I called back and asked if I should go in after all so I’m now having them in 2 days . Of course now that is 10 days later than what was probably a quieter time re-the virus peak!!
I have no idea how much the Faslodex protects me from the cancer , had no opportunity to speak to the doctor Herself, it’s all been through the nurse, so I’m pretty upset by their lack of clear communication. I’m totally making the decision by myself.
What a frustrating situation! I am upset for you. You should not have been put in such a position. The hospital staff are clearly not communicating between departments and offering conflicting advice. That is unacceptable. I would bring this up when you go back to the hospital. This should not happen again.
I hear you. I have to go for bloodwork and see my oncologist and then have my zometa infusion. I will also need scans. I am very nervous and a pit in my stomach. I feel I have to go cause it is my first infusion and I have a sore back again.
I understand your concerns. I am also a teacher and I have worked since January 2018 with the Ibrance, Letrozole and Zometa protocol. I have not missed any days due to sickness. I have learned to live the new normal. I think you will be ok. I recall the first Zometa made my bones ache and made me feel like I was getting the flu. However, it only lasted a day or two. With each Zometa treatment, I think it got easier. As strange as it sounds, Claritin really helps with the bone pain.
Upon the recommendation of your dr, I think you would be ok to continue. It really depends on the amount of exposure they want you to have in public. If you are going for a flush anyways, I would go ahead and take the infusion. My port is going on 14 years strong!!! Ity has literally been by best friend in this ordeal.
May God protect you in this odd time in our world. Keep up the good fight and stay strong!!! Best wishes to you!!!
My oncologist had me cancel my Zometa infusion for last Friday but insisted I have my PET scan on March 26, I was nervous about that because the machine is located at the hospital. I'm glad I had it done if I would have postponed it who knows how bad things would be( next available was end of April (by the way PET scan was stable) and my appointment on Friday with her is over the phone. I wore a mask and gloves and made sure the tech did the same. I have been on Ibrance since May 2017. Going out to Costco and pharmacy this morning. I live in the east county of San Diego. Stay safe!! Thank you for all you do as a teacher!!
It’s so normal to feel that way. My scans got pushed back also, he did not want to expose me to the hospital since I have been stable. I did go to the cancer center for my appointment the clinic had taken many precautions to keep the patient safe and I’m glad I went for my lab and infusion. Stay healthy and safe.
I'm nervous too. I have to go for my Faslodex shots, Tuesday, April 14th.
They haven't cancelled my appointment. But cancelled bloodwork and my onc visit.
They have also moved the Department to a different hospital away from the New Haven Cancer Center housed at Yale New Haven Hospital due to the many Covid 19 patients that are there.
Hi. I just found out I have to go I for my labs today. My oncology department was also moved to another location. So I feel a little better. My worry is the other people nurses and workers come into and their family members. I guess it’s just the added risk of going out that makes me anxious.
Hi Theresa, I was due for a Zometa infusion last week and my oncologist has put it on hold for a couple of months or until the virus is more in control. He doesn’t seem to think it matters too much considering what is going on. Just follow the advice and try not to worry. If you’re instinct is to cancel for a couple of weeks, I’m sure your doctor will understand. Best wishes, Helen x
Well, it is simple for me. I live in NY where it is like a war zone. My onco called me at home. Maimonides hospital is filled with virus victims. The whole palliative team that I had just started with were all sent over to work at the hospital.
My onco said the Maimonides Cancer Center is now set up as a hospital for those patients who were at Maimonides Hospital but DO NOT have the virus.
So they are stopping all CT scans and injections for now. She was even home when she called me.
She said we would say in May. I am really not that worried about missing the injections as long as I can continue to get my meds I am good.
At this point, because the virus is so rampant here in NY and the boros, I would NOT feel safe taking car service there and back and I do not have anybody to drive me that I know so that I would feel the car service is clean and disinfected.
So I would much rather pass on the injections than wind up with the virus. I have been home in my apt. since 3/16 and stepped out the other day to get milk and I was terrified.
It's one thing watching on TV, another thing to walk outside and see people all wearing masks and people walking into the street as you walk down the block.
My b. cancer is in my lungs. I find the mask difficult to breathe with though. So I keep it on my chin and as soon as I see somebody coming my way, I pull it back up.
So for now the lesser of the two evils is not getting my injections over catching the virus.
But if I had a husband or a relative or even a friend who could drive me and I was ABLE to even get my injections I would go. But now I am not willing to risk sitting in a car service that picks up many people and worry about catching the virus.
It's complicated, isn't it? Depends on the intensity of the virus infection in your area, the load carried by the hospital or clinic where you are going, your mode of transportation, and the urgency of the particular treatment/test. I am lucky that our area is not too hard hit yet, my treatments are at a hospital with no visiting except for support persons when needed. My husband drops me off and picks me up later.
It is sometimes hard toKnow what to do, isn’t it? I am being seen at the Univ of Michigan and appointments have been pretty much back to
Normal for over 6 months. I notice there are fewer patients and social distancing is very strict there. Waiting rooms are almost empty and scans and infusions are scheduled as before Covid. I am scheduled for Zometa the end of Feb. I do not do research and rely on information I get on this site. At some point I have to trust my doctors and nurses . I really appreciate all the information you wonderful people share. It is so helpful. Thank you. /Madlyn
I stick really close to home but I make sure I attend all medical appointments. I am receiving chemo so I refuse to miss any of those appointments. I believe that I need to keep steady with my treatments and scans. I wear a mask and sanitize my hands with everything I touch so I’m doing all I can to keep safe. Good luck.
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