I seen this and thought it was funny bc one doctor (not my onco) told me he could not stand it when a patient would tell him what they had found on google about a treatment or condition he was treating them for. I am sure there are thousands like him LOL....
HUMOROUS - WHAT OUR DOCTORS THINK - SHARE Metastatic ...
HUMOROUS - WHAT OUR DOCTORS THINK
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kearnan
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I get the truth of the humor. However, I am frustrated because I have gotten brain damage as far as vision problems, dizziness and balance issues. I told both of my oncologists for at least the last six months, if not more, and neither knew it could be a serious side-effect of Exemestane. They didn't have a clue. I watched Lisa's Ling's show about Benzos, when she asked a doctor, who had over-prescribed them to a patient who had committed suicide, didn't he know that was a side-effect, and he got very defensive. He said it wasn't the doctor's responsibility to know the side-effects, but the patient's. She was flabbergasted, as I also was! It was confirmed by another doctor that said that doctors are not adequately taught about drugs in medical school. These are the doctors that are ordering our chemo drugs, which I think a large part, in reality, is just a drug protocol, put out by the drug companies. I feel if they were properly involved, that they would be demanding better drugs for us, and that they wouldn't so readily accept poisoning us. I hate that they call some chemo "targeted," when there is nothing targeted about it. When these drugs attack our healthy cells, along with cancer cells, there is nothing targeted about them.
I have been on xanax for over 20 years. When it was first prescribed to me, I was told to take it three times per day every day and then you could get refills. It was over the years that they started to realize that it changes the body's chemistry and it becomes addictive (not in the sense you crave it, but that your body needs it to operate).
I went to Africa and the Amazon with my xanax. And then once here in Brooklyn, I went to my primary for the flu and forgot to get my new rx. I called the next day when I realized, but they were closed for several days due to some Jewish holiday so I thought no big deal.
Big big mistake. Doctors state that xanax withdrawal is similar to a heroin withdrawal except that with a heroin withdrawal you wish you were going to die, with a xanax withdrawal you can actually die.
It was terrifying. Went on for three days until I was ready to jump out the window. It was scary and unbearable and I did not realize until the second day that it was the xanax when I called a medical hotline. By that time I could barely function.
Now primary doctors no longer prescribe it, you have to go to a medical psychiatrist once a month and now it is considered a controlled substance and there are no refills anymore. I wanted told two medical psychiatrists that I wanted to try and get off it but they told me it would take 1/2 the time I was on it to get off it and it was better at this point for me to stay on it.
I think if somebody is going to commit suicide or is depressed, they are going to do it anyway. You see many people who are on antidepressants that commit suicide. I mean geez, one of the side effects of anti depressants are that one may have suicidal tendencies.
I always think with these new drugs they never really know until years later what, if any, other effects it can have.
I take a .25mg xanax occasionally (maybe 4 or 5 times a month) for sleep. My cardiologist prescribes it, and I fill the scrips with no problem.
I can't imagine taking 3 a day; I'd be in a coma. I know it's habit-forming (that's why I take it so infrequently) but has no idea it could be so bad. Thanks for the heads up.
My friend from FL calls me about twice a week. She is 62. She goes to a balance doctor (never heard of that). She is constantly saying she feels unbalanced, suffering from vertigo and has extreme restless leg syndrome which makes it hard for her to sleep and she does not have cancer and does not take any major meds except for what they give her to help the above. (Personally, I think she is a bit of hypochondriac because every single time she calls me, she is going to another doctor for another problem.) She goes to more doctors than I do for sure.
How can doctors be taught out new medicines in school until they come out years later. With new drugs, even if approved by the FDA, we and the medical field really doesn't know years down the line what effect they may have on us?
I don't blame the oncos. I mean there is only so much that they can do. They are doing their best to help us and have loads of patients, have to deal with having to tell people that their cancer is spreading and dealing with the emotions of the patient. So they prescribe to us what is suggested for our types of condition. We, the patients, should be demanding better drugs. The oncos have enough to do with their practice and I am sure they attend seminars and such, but they are only human. We expect them to know everything and cure us, but it is just not possible.
More than one onco said we have to make you feel sick to make you better. I get it. Cancer is serious so requires heavy duty drugs and there are going to be side effects. It would be nice to take a pill and it just goes away, and someday that may be possible, but not right now. And when cancer is finally eradicated, some other disease will pop up.
We are better off than women years ago diagnosed with stage iv when these drugs were not available and death was expected much sooner.
I am talking about the fact that doctors are not properly educated about the drugs that are out there. Oncologists have a lot on their plate, and it is overwhelming. A woman that I met in the medical field told me that they talk to drug reps between patients when they are rushed. They shouldn't be ordering current drugs when they don't know serious side-effects. At the very least, whenever a patient brings up a side-effect that drug pamphlets warn about that say "Tell your doctor immediately," which I did, and they are totally unaware, then it becomes a serious problem. At the least, they should note these side-effects and ask a member of their staff to investigate the side-effects of drugs the patient is on. There are balance expert physicians out there because obviously people have balance problems. My quality of life has gone way down hill. Imagine that the only time you feel normal is when you are sitting, but the minute you move forward to stand, you become dizzy, because your sense of balance has become a victim of a drug you were on for a year, and no one knew.
I am sorry you are having issues with the drug. Well the same drug has different effects on all women. Some may suffer effects that the medicine marks as a lower percentage side effect, while the majority may not suffer from that same side effect and it works for them. I know that when I started Ibrance and was getting it sent federal express to me, that once a month the Pfizer nurse associated with CVS would call me to see what, if any, side effects I was having, suggestions on what I could to (but always said check with your doctor first), so the makers of the drug themselves were monitoring the new drugs themselves which it as it should be.
Oncos cannot be expected to know or understand every side effect that may or may not occur. That is the pharmaceutical's company to do so. I felt better having the nurse call me every month. I assumed this was Pfizer's way of continuing the research to see how new patients were doing on it.
I was on another forum board for stage iv and Ibrance and several of the women went through something they called "Dragon breath." They would sometimes cough and a thin GREEN mist would come out. It was a small amount of women, and caused no pain, but several had the same experience.
It never happened to me but when I went to my onco, I told her about what I read about what some women had occur when they were on Ibrance. She said she never heard of it but she wrote it down and said "It's good to know if one of my patients ever complain about it."
I think the pharmaceutical companies should be following and questioning the women about the effects of any new drugs.
If the drug makes you feel that bad, I would, if it happened to me stop taking it and asking for another medication. There are several out there. I only was on Ibrance for three cycles, not bc of progression, but because of my issues with it. So I would not continue to take a medication that made me feel like that and would ask for another medication then. What did you onco say?
Thank you. It's such a scary and life-changing side-effect that it is terrifying! I'm not blaming the doctors as much as the medical schools. They are the ones that are lacking in their training. Pfizer did have a statement on their website placed above the more common side-effects where they said to tell you doctor immediately. I did and thought because they stated this that the doctors would be aware. You are to be commended on all that you have been through. You have so much strength!
We do need to do research when we are prescribed any drug these days. Good research is the key. Like John Hopkins or Mayo clinics. Also because I am Canadian I go to the Canadian Cancer web site for info. I rely also, on my pharmacist. He knows me and knows his medicines.
I found out 6 years ago, I cannot rely on any one source for information. All doctors do there best, but they can't know it all! I am fortunate to have a super great family physician. I have a new Oncologist so have to see how we get on and a new Radiologist. Here's hoping!!
I am just starting a new medicine regimen. Fulvestrant and Ibrance. Not thrilled with taking heavy duty drugs. I am not sure I want to proceed with this as it is costing me and my family $832.00 per month. With talk to my Oncologist tomorrow about options.
I have stage 4 breast cancer which has gone to my left hip bone.
It is great to have this community to come to for peace of mind information.
Minesing Girl.. (June S.)
If you have private insurance and that is the cost of your co-pay for Ibrance, reach out to Pfizer they have programs in place for women with private insurance who have high-copays and will give it to them for free or for like $10 a month. Not many people I know like you that have to pay that amount every month that take Ibrance.
I have read of many women doing that. Also there are cancer organizations out there to help women who cannot afford the high cost of copays for these meds. Pfizer will NOT help people who have medicare or medicaid, but if you have private insurance, there are many ways to get assistance with the high-copayments. Just google or ask the social worker, if any, at your cancer center. There are cancer organizations out there to help breast cancer patients with the cost of the drugs, depending on how much funding. It is primarily to help those women with private insurance who have such high copays.
While I was put on Medicare in August, I was taking Verzenio. My co-payment would have been $2,437.00 per month until I reached some donut hole amount. I, myself, googled and found out that Lilly (the company that makes Verzenio) had a program called LillyCares and since I had Medicare and a Medicare Plan D (rx) plan, but that I obviously could not afford the $2,437.00 amount, I filled out a simple form and had my onco sign it and have her fax it and Lilly said they would give me the drug for free until the end of the year. Sometimes you have to do your own work and find out what help is out there. You may be surprised.
I know many women from the previous forum board I was on that love the Ibrance and falsodex. Many of them have been on it for over two years or longer and still work full-time and say it is a godsend. Cancer requires heavy duty meds. None of us want to be on them but we know what the alternative is.
I am Canadian and do not have private health insurance. My mistake. Today we need extra coverage, even though most drugs are covered here. For instance Letrozole and Ibrance are covered. I can only hope if I decide to proceed with this that it will eventully be covered under our provincial health care, which is wonderful.
Trouble is we are living longer and getting more diseases so health care has trouble keeping up.
I understand the alternative to not taking the drugs. However, there is, for me, quality of life. My doctor said the medicine is poison. What they hope is that my body will be able to sustain the against the poison while it kills or diminishes the Cancer. If the drug makes me sick and slowly ruins my body not to mention the wear and tear on the good side of my hips and legs, which are now affected from cane use.
My kidneys have taken the drugs for the last 6 years. But now it is different. These are heavy duty drugs. Besides the butt injections affect my sciatic nerve and my hip with the tumour.
Besides the tumour on my left hip, I have Osteo Arthritis and four fractures in my pelvis which is now badly tilted to the left.
I think I am headed for a wheelchair, even though I am still mobile and can drive my car. However, everything is slowly deteriorating.
I am not a depressed person. In fact I am very much a able to cope with a lot. Which I am doing. My husband is not well, mentally or physically. I am known as an up beat person and everyone admires how very I have managed so far.
However, I have to question if I like the prognosis and want to go there or just let
nature takes it course. I guess I don't like not feelng well. Quality.
I know there others here dealing with much more. I wish them very well. Maybe I will change my mind, once I talk to my oncologist. But I would need to know that the Fulvestrant and Ibrance would buy me more than 2-3 years.
I hope you understand. I do appreciate this site and all the information I find here. You are all wonderful.
Cheers, Minesing Woman, (June S.)
I forgot to mention that I am 79 yrs. old. If I was younger, I might feel differently. I hope I haven't upset anyone. This is just my perspective.
Also, changed my sign off to Minesing Woman with my name in brackets because girl doesn't fit anymore!
cheers, Minesing Woman (June S.)
I know many many women from the previous support forum board who love their Ibrance and falsodex treatment. Many of them, more often than not, have been on the Ibrance for 2, 3 or more years and are working full-time and have not had to go on another line of treatment so far. For me the Ibrance was tough to handle (my week off at 125 mgs) so I stopped after three months and am now on Verzenio and the falsodex. But there were so many women who were still working as teachers and nurses full-time so they were able to work and continue to take this combo.
Cancer is a heavy duty disease to have so they need heavy duty meds to combat it from spreading and remaining stable. All of these cancers meds are going to have side effects. You will never know until you give a try but here in USA, it seems to be the first line of treatment because if it works well for someone, it can work a long time, more than the other drugs to keep on progression-free.
Nothing in life is guaranteed. Nobody can promise you anything. But it seems like if a woman is able to stay on the Ibrance and falsodex for more than a year, it seems more likely that she will continue to be able to stay on it with no progression. The longer you are on it, the longer it seems to be effective. Obviously, some women will have progression after a while and have to switch, but the majority of women I know have been on it a long time and swear by it.
But we both know nothing can be promised to us. All I can tell you is that it seems to work for many stage iv women. Wishing you the best.
Your note to me meant a lot. That is the great thing about this community. It impacts us in ways we don't always realize. I read as many of the letters as I can and reply to the ones, if I think it might help. Just wanted you to know your letter impacted me greatly. Just to know someone out there understands. Your name sounds Irish. Is that the origin? I have an Irish background.
All the best to you, Minesing Woman (June S.)
Yes, 1/2 Irish and I thought 1/2 Puerto Rican (My parents did not raise me) but I was raised by the paternal part of the family (my father's Aunt and Uncle) which is Irish so I grew up in that environment. Until I did an ancestry DNA kit, and it came up that I was 33 1/3 percent European Jewish and found (they have not replied) first cousins on that site with Jewish last names. I was baffled until I found out that my bio father had another full brother that I was not aware of and that he married a Jewish woman who raised her children Jewish, thus these 1st cousins and 2nd cousins coming up with Jewish surnames.
Wow! That is a very interesting history. Thanks for sharing your that.
I also was not raised by my parents. I and my two older sisters and one brother lived with my maternal grandparents. My Father was English and my Mother was born in Ireland. She immigrated to Canada. with my grandparents in 1926 when she was twelve. Not sure I am explaining this very well. They never lost their Irish accent. My husband is German born and immigrated to Canada in 1958. We have 3 grown children.
Cheers June.
That’s so interesting to read about ibrance 𝐂𝐨𝐬𝐭 and available financial assistance.
I have Medicare and pay $2600 per month until reaching the donut hole amount. I believe it costs $13,000 per month before Medicare kicks in as well as my PPO. I’m glad to read that others in need can get this for free as I’ve wondered about that and worried they’d have to go without.
It’s certainly Expensive and I just pray it does the job!
All best,
Kathleen
“Pfizer will NOT help people who have medicare or medicaid”
Not necessarily true that Pfizer won’t help someone on Medicare. That’s what their forms say, but they very generously waived our family’s Ibrance copay completely.
I thought the difference between chemo and targeted therapy was that chemo attacks in both cancer and healthy cells. Targeted supposedly attacks primarily cancer and less healthy cells. Which theoretically is better for the patient.
I thought "targeted" meant that it would attack the cancer cells more precisely. These meds attack healthy cells. I am a picky eater and cannot eat food that taste like cardboard. I just got the book "Cancer Free with Food." It is written by Liana Werner-Gray. She refused cancer treatment and used whole food to heal. It worked. She had been hooked on sugar and junk food. After eliminating processed foods and sugar, eating only whole foods, the cancer died. The book says that after three months on whole foods that over 500 genes that regulate cancer were beneficially affected, either turning off the cancer-causing genes, or turning on the cancer-protective genes. It said that no medication can do that.
The book sounds very interesting, I will check it out. One thing I am curious about is whether she was stage 4 when she change her diet. Yes I have heard that cancer can be eliminated by changing your diet, assuming a person was not eating well at all before. My diet wasn't the greatest but it wasn't that bad either. I have cut back on sweets and sugary Foods. Once in a while I might have a little bite. I've had two doctors tell me adamantly that the premise that cancer feeds on sugar is a total myth. And I don't think they were fudging or talking off a script, they seemed legit. Something about studies they have done with diabetics who have cancer so the evidence did not add up. I need to learn more about this, frankly. My doctor's next plan when my ibrance stops working is to send me to the genomics clinic to be evaluated for targeted therapy.
Just going and browsing through these posts, and funny that you mention what the two doctors said to you. Because I seen an article where they said it is a TOTAL MYTH that sugar causes cancer cells to grow. It said it is the number one falsehood that many believe to be true. I never stopped eating sugar since I was diagnosed. (Actually, I never stopped eating anything I like LOL)
Well, I always believe in checking sources thoroughly. I mean they can say anything on the internet. But the fact that I heard this from two different doctors in two different states seems to lend a little more credibility. I don't totally understand it, just that they have done studies with diabetics to indicate that sugar does not, in fact, feed cancer. And if it did, I certainly would give up sugar completely. But like you yes, I tend to eat what I want generally, I get cravings and I want them satisfied. They often don't go away until I get whatever it is I'm craving. That being said, I have cut back on sugar to a certain degree, just don't get a taste for sweets like I used to. And when I do eat it, I eat in small amounts usually and I'm happy.
LOL...I did not take the photo from a doctor's office. It was an article about how many doctors get frustrated when they are trying to treat their patients and their patients mention all sorts of alternative treatments that they "read online." He said patients think they can chart their own treatment because they read it on google. The only thing I really look at on google is if others have some of the side effects that I do. Once I see that some do, I feel better that it not me alone feeling some odd side effect.
Yes, it’s brilliant! 😊
I think it’s important to make a distinction though. Not everything we Google results in reputable sources/information. I certainly trust the Mayo Clinic site or UCSF, Stanford and there are many others both here and abroad who are definitely publishing reports and other information responsibly.
And then there are of course some doctors who have huge egos and don’t necessarily want their patients to be full of information and question their approach.
I think we all need to be able to advocate for ourselves and know as much as possible about our disease.
Thanks for sharing this! Kathleen
I’m like you Sandra. I especially like articles by the Mayo Clinic. They’re factual, approachable and not scary.
Ha! That is great!
That’s hysterical! 😂
Computer Programmers have a response to this.
“Don’t confuse your ‘google search’ with my google search.”
Drs are well educated but that doesn’t make them God. I’ve watched Oncs get tied in knots trying to work the most basic schedules. We all have skill deficits and imperfections... Unfortunately there is some level of superiority in many ‘professional’ vocations. Medicine and Law particularly.
I feel Drs lose site of the patient and just see the illness and it’s metrics. They work inside a framework, which doesn’t allow them to consider anything else.
To some degree this makes sense, but when it comes to secondary C. Isn’t it time for them to listen to the patient and help them holistically. Mind, body and disease.
Their disdain at mere mortals attempting to understand and try to help themselves is insensitive and surely not what they got in to the job to do.
I wonder, were the shoe on the other foot. Would they just sit back and be ‘Patient’. I am sure they would not. In fact i know at a least a few GPs who are ill and seeking other support to treat themselves.
The difference between them and us is that they can get what they need with very little trouble. Presumably because they can have pretty much what ever they want prescribed privately with the same level of evidence you may take to your oncologist.
This is effectively a two tier system. Things need to modernise. Makes me sad/mad that people who are dealing with illness are shutdown for fighting to get well.
Don’t take any crap!
If you want to to stop taking the inhibitors and injections where the purpose is to stop the progression of the cancer while still giving a decent quality of life, that is YOUR decision, Yes, oncos are trained are on following the progression of cancer and the effects of the meds on the patient. No, I do not they are required to treat a patient holistically if a patient wants to go that route. Then give up the meds and there are enough holistic doctors that do this. They are doctors and go by guidelines that work for many other women with stage iv. Nothing everything is going to work well for all. People seem to expect miracles from their oncos.
If you are not happy with an onco or a medical center that is dedicated to helping stage iv cancer patients and other people with cancer, you are free to leave and go to one of those holistic centers. It is not the responsibility of a trained onco to have to treat you that way. There are enough places out that that practice what you seem to want to try.
No, Oncos are not God and sometimes I think their patients expect them to perform miracles. I referenced once before Steve Jobs. He was diagnosed with pancreatic cancer (which is normally a death sentence bc by the time it is found it is too late). But he was "lucky" his US doctors told him because they caught it in the early stage and with chemo and radiation they could battle it and give him more years.
He refused to want to go that that route. So, and since he is a multi-millionaire) and he went to different countries for alternative and holistic treatments and eating certain foods and juicing, etc. After several months, he started to feel worse so he returned back to US to find out that now his pancreatic cancer had grown to the advanced state and that the chemo and radiation that would have helped in the beginning was now off the table.
He told his biographer who was doing a book on him while he was getting ready to die that his biggest regret "was that he did not listen to the US doctors when first diagnosed" because he could have had many more years of life.
At some point you decide what kind of treatment you want. If you are not happy with what your onco is advising and they are against alternative treatments, then go find a doctor that is into that. They have many patients and they do not have the time to heal your mind. That is up to you to go and seek what you are looking for then. Wishing you the best in finding it.
I regretted posting this but I wasn’t commenting on the idea of eschewing standard of care in exchange for alternative treatment.
I was ranting a little with regards to the image. Which paints the patient in a very negative light and while it might be seen as a ‘joke’. It’s derogatory.
I’ve met with a mix of different approaches from Oncs and generally they are good. I do feel that they could signpost better for nutrition and mental health but that’s just my experience.
I didn’t intend to come over as anything other than a supporter of those who want to better understand their disease. Whatever their motives.
It is meant to be humorous but it is also meant to send a message. Most medical doctors go to school for their particular field and have years of experience by the time we go to see them. So think from the doctor's side, they order specific treatment that they have given in the past and seen it worked, or if it doesn't work, have another backup plan so they may find it offensive or derogatory when their patients bring in articles they found on the internet questioning the treatment the onco has ordered bc of an article they read. There are a dozen new articles on the internet every single day about what causes or can cure cancer.
There are some oncos who may be willing to try whatever it is you want, while there are others who will say I do not believe that will work and I will not be responsible for assisting in this treatment and suggest you find another onco or doctor who is willing to. They too have liability issues so if they do not believe something will work that a patient has googled or seen in an article, and believe it not to be medically beneficial to one of their patients, they will not do it. Then you just find another onco who is willing to go along with what you want to try.
My onco is a doctor that specializes in cancer. She told me the last visit when I complained of how I was feeling tired, unable to seem to lose the weight I desperately need to feel a bit better. She told me on my next visit she is going to recommend a nutritionist to me. My onco is NOT a nutritionist but she will refer me to someone who specializes in that with people who have cancer. When I referenced a few months ago that I was feeling that I was going through a deep depression, she offered to recommend a therapist for me.
As for the mental health part, again, that is not an onco's responsibility. My very first visit after being diagnosed with stage iv with my onco, she came into the room I was sitting with and told me she would be a bit delayed bc another patient she just had to give some bad news to and the lady was not handling it well and was extremely upset. My onco asked if I would mind waiting a bit longer when she continued to talk to her. I said no problem (and this was my very first visit with this onco after diagnosis). I felt bad for the other woman and waited for an extra 1/2 hour. But if my onco had to do that for every single patient she had, it would delay all her other scheduled appointments. I ASSUME she tried to reassure her and she may have been a patient of her for a while.
So not only do oncos, many times, have to deliver bad news to a patient, they are also human and I imagine it takes a drain on them emotionally also when they have had a patient for a while and now have to deliver the bad news. Imagine if they were expected to all three jobs for every patient they had. My cancer clinic has a therapist. I went to him once, but he was so young and I got nothing from it so I choose not to continue to see him. I think in this case I may feel better speaking with a female therapist. But if I get to the point where I feel I need to go and speak to a therapist, I can go find another therapist outside of the cancer center to speak with.
My cancer center also has seminars. The social worker, as a matter of fact, is holding one tomorrow and asked me to please come. But it is not really for stage iv patients. It is for survivors of breast cancer, caretakers of those who have it and some doctors. They also suggested one wear pink. I said to her first its at 6:30 at night. I do not drive nor have anyone to drive me. I am not one of the breast cancer survivors (in the i, ii and iii) stage, I have no caretakers and I do not want to wear pink. If it was for stage iv, maybe I would have gone but probably not anyway.
I have occasionally asked my onc. about something I read online. I always preface my question by saying something like: I'm now going to say the 6 words I'm sure you hate to hear "I read something on the internet"... She usually chuckles and then I ask my question. My online sources are usually reliable: WebMD, Dana Farber research, etc. - not some new-age healer discussing the latest cure-all herb or something like that.
What I get confused about is that when I was diagnosed, my first onco told me not to feel guilty which totally bewildered me. I said why would I feel guilty? She said that when I tell many women that they have breast cancer, they feel guilt. They are dumbfounded bc they do not smoke, have no family history, do not drink, eat healthy, run marathons, exercise daily and yet they still get cancer and think they did something wrong.
So if women like this who were already doing everything to remain healthy still got breast cancer (bc it is really random) then if when eating healthy and doing exercise, they still got cancer, how can eating healthy after cancer have any effect on the cancer.
I should NOTE. I was NOT one of those healthy women. Not at all LOL
The sign is humorous however without forums like this and women doing their own research We wouldn't know questions to ask for directions to take. I guess there's a fine line
One of my college friends is a surgeon and she has a mug with that on it....I laughed and laughed...
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