My Husband, My Life, My Love, My Family, My Cancer
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Geeze😕 Philly~. take the ibrance when your counts bounce back, request another blood drawl to see. I had over a three month break from ibrance once. Bone progression is slower than most progression. That's not to say it's not worriesome for sure. The lack of communication I believe it the problem Here. Usually they change to ibrance and falsodex vs letrozole, when it's just bone. Thank god it's Just bone, please try to hang onto that.
Mae~I'm sorry. I don't like anything that you're going through. I am sending you tons and tons of good vibes. Was thinking of you and wanted you to know. I know about the GIdoc. My DD is dealing with one right now.
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Philly, I can relate to your feelings, something approaching panic and abandonment? I have had times when I really wanted to talk to my onc but she was gone. However, her NP has always been available. Of course, the NP is not the one to talk to about treatment decisions, but she does have secret ways of contacting the onc if something is happening that needs her immediate input. I email my onc and she usually responds quickly. But there have been times she has been out of the country or sick, and that has been hard for me, not knowing why she hasn’t responded yet. At my cancer center, I was surprised to find, they don’t really have another onc fill in. Though if things are dire enough that you need to be in the cancer hospital, there is a full staff there. And they have an urgent care/triage clinic. But from what you have said, your situation is not so dire physically, but very worrisome to you. And this is important and deserves attention. First progression, right? It’s like being diagnosed all over again. So hard. It may be that your onc will call you soon. Or can you move your appointment up? If you really feel you are not being heard, there is probably a patient advocate or a social worker who can help you. If the nurse tells you not to panic, she needs to be able to explain why. Maybe the PET scan intensity is not super high, etc. Check the guidelines or ask the Ibrance ladies what the parameters are for delaying the next dose for low counts, and make a plan to get rechecked. I would stay on your current treatment until you have a new one actually in your hand, because it may still be doing something. When Ibrance fails it is typically a slow fail. I won’t be surprised if you get faslodex plus a different targeted therapy next.
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Mae, don't worry about trying to keep up, just let us hold on to you.
(Sorry for multiple posts, guys. It’s because I will lose my place going page to page.)
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MJH, I certainly could have done that. I would also shave what is left of my hair so they could see the cool scar from brain surgery and not wear my prosthetic breast. Then ask if I am disabled. Ha, that would serve them right.
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Sounds like a great plan!
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Candy, good for you, asking to participate in the reserved shopping hour. I don't think you would be turned away even if it is a different person. You could go there, and see if it looks like a crowd or not. At one of my local stores they now have door person who only lets someone in when another goes out, so there won't be too many people. This person also wipes the cart handles with disinfectant.
Mara, that's awesome how you advocated and educated not only for yourself but for other people with hidden disabilities.
Regarding libraries, I want everyone to know that some libraries loan books and audio books via an app on your device, for no charge. My DH uses this as he prefers audio books. So you don't have to go to the library to get books.
Mel, it is good they are not rushing your daughter out until they feel she is doing well. We never would have imagined not being with our sick kid while we are on this earth and still upright. What a horrible situation for you.
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Philly-If you are over your sickness, especially the fever, I would resume the Ibrance and your AI until you are told otherwise. .8 ANC is not low for me-it's more par for the course and as long as you don't have fever, the guidelines say it is ok to stay on treatment. Google the Ibrance guidelines to read more. I think it is more risky to go without treatment for an extended time.
Mara-Good for you for speaking up.
Mae-Sorry to hear about this set back. How frustrating since food is such a wonderful pleasure of life.
Mel-Hope that your DD is feeling better and that her medical team is figuring things out.
Good wishes to everyone else-I'm too tired to remember any more details. Sleep well and stay healthy.
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Hey Philly, how frustrating that your MO is so unavailable right now. One way to look at it is that he believes it’s so slow growing that you’re fine waiting until April 1. Another is that it’s time to change. A middle ground could be sending all of your records out somewhere like MD Anderson to get a second opinion in the interim so that when you’re making decisions on April 1 you’re ready to dive in. Good luck friend. The uncertain is excruciating
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Mel, I hope your DD gets this stomach issue figured out. But it would be the ultimate awful to have a loved one on hospital and not be able to go to them. I think about that with all the covid cases, scared people in hospital denied the presence of their family. I wonder if we will look back years from now and think we were prudent and wise or foolish and inhumane? Hope DD is better and you don't have to feel the agony of not being there.
Mara, local grocery stores have opened special early shopping time to people who are elderly or with mobility issues. Not people who are disabled. If your disability is one that affects your mobility, you get in to shop. I believe the thinking is that people who can move freely and normally can get out of the way of other people if you feel you need to. But the very elderly and mobility challenged are not able to do this very quickly. I think in this situation stores are defining disability by their own terms and not by the technical govt guidelines. At least that's how I currently understand it.
Friend called me after her first chemo treatment this week. She sounded positive. She said she was surprised that she felt pretty good. My heart sank. I said, "that's good to hear" but in my head I was thinking, wait for it... I have been on this site enough to know this is going to be a rough ride for her. I made some chemo caps for her. There's so little I can do.
Hugs to all and good luck with this isolation thing. I am isolated much of the time so this is pretty business as usual for me. I did do some stock-up shopping. I bought 3 cans of soup. Good grief. We will be dead in a week from starvation if the food supply goes down.0 -
Lots of posts to catch up on. That is good. We are here for each other.
Philly- Good advise from all. I too am on Ibrance- 2 1/2 years now. I would recommend to restart Ibrance. 0.8 is too low. And another blood test to recheck now would be nice. But if you cannot get an order from the doc for another blood draw, I would just restart now. Thinking that time has lapsed for the count to go from 0.8 to 1.0 where it needs to be. I cannot scroll back to your original post or I will lose my place. Usually we wait 1 week, do another blood test, and restart. So wait 1 week from the 0.8 result and restart. I would not want to be off treatment until appt.
Mara- You go girl.
Mae- Thinking of you. Hugs.
runor- So true. We can starve as we are on isolation. Good Grief.
I am going to make a list and try shopping online to Wal Mart today. Will see how it goes.
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I went out to get my mail and cvs for my Medicine, people just are clueless. People wondering around just doing nothing. Like shopping. ? Why aren’t people staying home. I ran in and out so quickly I didn’t even want to look at anyone. Those poor counter people that have to work through this. At least I’m able to stay home. My daughter is finally Home but is afraid to eat. She’s scared it will happen all over again. She’s spending the day here with me because she doesn’t want to be alone, I don’t blame her. I want her to get some rest. She look tired and I can see the weight melted off of her. Not that she has much to spare. But geeze.
Hope everyone else is doing good today. I am watching. And they are saying now that it may go into three weeks of self confinement. I just hope we got ahead of this damn thing. Enough to prevent this from being a months months thing Instead of a weeks thing. So completely complicated.... so sudden really. Unreal the days we live through now. Un chartered territories
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I watched some of the American COVID info from trump and others. I also watched my own Prime Minister. I don't mind if self isolation goes longer if that will help keep infection rates down. As far as going out, I only go for necessities, not socializing.
Pretty tired today post Herceptin yesterday. Will be staying in for today have a lazy day. Just working on my penny sites for some extra cash. Was going to walk but really don't feel like. Listening to my body this time.
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Well I put in an order for online shopping at Wal Mart. ALL items limited to 2. And of course no paper towels, no TP to even put on list. And my wallet is hurting---all items are named brand, no generics. I am supposed to get an email on when my order is ready and where to go to pick it up. It is one thing to do this for a few weeks---isolation, rationing--- but MONTHS is going to be unreal. I was watching a show today and they were saying they are staying in and COOKING !!!!! WHAT !!!!! I AM RATIONING FOOD. The President is talking about shortages in ventilators and PPE for healthcare staff. That is very important. But what about food and necessary paper items for the general public. What about ramping up production of those items? And enforcing limits on items so some are not hoarding. What do I do when I run totally out of TP??? Or the cabinets are bare??
This is getting scary.
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My market was low on supplies but then it bounced back. People over-bought (like to stay home 2 straight weeks) but the stores still get deliveries and stuff is coming back.
Could you make an order on amazon and have it delivered?
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My grocery store also got more supplies, I also travel around to different stores too. I just need my staples, beans, queso tortilla chips and frozen burgers, both chicken and rice. I got mcdonalds burgers delivered to. Ordered 8 of the hamburgers, put most in the freezer for a fresher option or a quick snack. And chocolate of course. I am also wearing some of my headbands as neck gaitors to see if there is any protection in those when I go out tomorrow.
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my DH said that meats and etc were being restocked quickly. But the water tp and wipes not coming around so fast yet. I took a half of a roll of paper towels and sat it in a bucket. Poured bleach and diluted some water with it, and made me own wipes. Just gotta watch the drips. But I. Had no choice. It’s going to be more than two weeks. In my Opinion.
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I talked to someone I know that is a store manager for a dollar store (not Dollar General chain). She said milk truck guy said production is not meeting demand. And bread truck guy said the same thing. Yes, people are hoard buying, but also the stores are having trouble getting their supplies from their suppliers.
Got email update on Wal Mart list----butter out of stock totally and so was waffles and frozen chicken patties. They are substituting some of my items also for different sizes and brands. And I was NOT hoard buying. Just trying to get what I need.
Santa- I have not tried to order from Amazon yet.
Mel- May use paper towels for TP (and not flush).
Went out this morning for my monthly Port Flush and monthly Lupron injection. Felt weird to be out---been in all week. Traffic was normal for our town. Saw cars in parking lots of Auto Zone and local cleaners. Looks like normal flow of town movement. Filled gas tank and saw newspaper on counter of gas station. Says first COVID case in our area--- 1 county west of us (maybe 20-30 miles away).
Other than picking up Wal Mart items when get notice they are ready, I am now in house again for the next week. Gas tank filled, doc appt done, groceries in the works (for what I can get).
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Good morning dear friends in Mel's living room!
Thank you all so much for your thoughts and advice to my issue that I posted about a couple days ago.
I called and spoke with my MO's office social worker, who is a gem, and I let it out, the tears and frustration. She was so helpful and validating and told me that everything I was experiencing and feeling made perfect sense (which is always helpful to hear that I am not being crazy LOL!). She said she would speak with my MO and low and behold, he did call me later that day and of course I missed the call.
Anyway - he advised that I start back up on the Ibrance on Monday. Imagine if I hadn't been persistent, then I would just be floating in limbo not on any meds until April 1st. I know that these things are slow moving generally speaking (bone mets) but it still got me all worked up that no one was responding. I ALSO do understand that our medical systems are completely going bananas with COVID19. So many people in my area are getting their MO appointments canceled...not their infusions, but regular appointments. I am curious how my appointment will pan out.
I am sending love to everyone. I am going to make a little video soon and will share it on here, so that if anyone is interested can watch.
Love and hugs,
Philly
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So I am trying grocery delivery, slower than usual, to be expected but I am shocked at what little there is. I am angry with the people panic buying items as I was told ALL items were low on stock. This means the people panicking are buying more than ever and stores cannot keep up. I don't even buy the stuff you would expect to be short, TP and sanitizing gel etc. If people do not calm down, there will be looting of the stores. Our supply chain is not broken, we need more stores to place limits on everything. Every older person who has been through a world war has not seen it like this. Everything was rationed, but everybody had access to food. Stores and government should talk to people on how this can be done if they don't expect people to riot and loot. We need to ration so everybody can get what they need, including toilet paper.
I cancelled the order. Decided to go out looking for myself for the things I want. My city made buses free and to help protect drivers, we are boarding the back doors of the bus. People with mobility issues are using the front. Given that different stores have different levels of stock, I need to check them myself. I do hate store hopping, but don't feel I have a choice. Until people are made to be more reasonable, these shortages will just go on and on.
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*****
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I finally decided to try delivery for my groceries instead of store hopping which really is not great for me anyway. If the order does not have the things I want, then I can try different stores. I should maintain my quarantine for my safety and others. I am mad at people when I think they are being selfish, I should look after people too. It is not like I am completely out. If I cannot get stuff, then I will go out.
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Philly- Glad you are restarting Ibrance for now. I went and got my Lupron injection today. My cancer center said they are still doing the patients' treatments but are cancelling some MO appointments. I have my MO check-in appt March 31. We will see if I get to go.
Mara- I KNOW WHAT YOU ARE SAYING. We need to ration. And the Government needs to step in to enforce limits and prevent rioting/looting. You be careful and don't store hop and get sick.
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DH and I were talking about Turkey yesterday, so he went out and got one, looks like people aren’t thinking about them this time of year but you can get so much out of it. Some non essential appointments are being cancelled or postponed, which is fine by me. Not much happening here to report, less stomach upset today, I’ll take it.
I hope you’re all well 🙂
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Candy, I went to my local grocery store. It had been stocked up. No TP or any paper products but I was able to get my beans and queso with tortilla chips. Those are the main items that matter. I got a delivery of my cereal and granola that was unavailable. I don't feel like rationing will be necessary. Stores are starting to impose limits which are good. I have enough to last without me going crazy. I was starting to feel like I was panic shopping too so am putting a stop to that. I only went to one store.
I also cancelled an appointment with my neuro onc. She was wanting to talk about my couple of faints or seizures and likely would have recommended different drugs which I will NOT take. I was not allowed to bring SIL. I agree with having as few people as possible but also think I can do without the app't since I will not change my mind. I feel good about doing that.
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my son went into get somethings after work. Still no water or toilet paper, or wipes. Nothing disinfectant related was history. He said finally. (He’s a millennium). This is starting to finally worry me. Like hello young people wake up!
Cases are almost doubling over night! Scary shit folks
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Mae, glad to hear you had less stomach issues. Thank goodness for small favours.
Mel, I confess that as late as Monday, I thought this whole thing was being overblown, but I no longer feel that way. I know it is serious and people need to be so careful about washing hands and all of that. I am also glad large groups cannot get together. That should help slow the spread. The only thing I do like is the lack of business when I go for a walk. It is peaceful in a way.
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I had my first treatment in my clinical trial (Immunotherapy plus chemo) yesterday. All went smoothly. I'm on steroids so I'm super amped up. Did a Zumba class (live on zoom videoconferencing) last night and another this morning. From being almost bedbound to this is a big change lol
I took covid seriously from the start. I remember sars and how many health care workers died in Canada. In January frontline nurses were already concerned seeing the fast spread in PRC. Everyone knew it would show up here - just a matter of time ...
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Moth, glad the steroids had a positive effect on your energy level. I know when I was on my first chemo, those steroids certainly did give me a TON of energy and I was able to ride my stationary bike (my main exercise). It helped keep up the energy level. I always had the one day slump where I just felt like I had a flu, malaise, depression and found out that was just the steroids leaving my system, a crash so to speak. The crash never lasted long and I spent the two weeks until treatment feeling pretty good. Before and after brain surgery, I walked so many circles in the hospital that I got stress fractures. I was very hyper.
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Moth, I am so glad you have started treatment. I want to hear that you are one of the great success stories of immunotherapy! I well remember “Steroid Wednesday" after my Tuesday Taxol infusions. I could leap small buildings.
Mara, I am glad you got some of your staples. I do encourage you to keep walking for health, but get things delivered if you can and avoid stores as much as possible.
Mel, is your millennial son a true millennial, or is he a later generation? Is he tired of millennials being blamed for partying on the beach? Those young people are Gen Y or Z. It's like the term millennial is now used to mean late teens/early twenties without reference to the actual generation. Interesting.
Illimae, brilliant idea to get a turkey. You can get a lot of meals out of that.
Candy, I think things will stabilize and you will be able to get shopping orders filled better soon.
I think the reality of the magnitude and length of this pandemic has snuck up on some people. Some of my family was talking a few days ago like this will all blow over in a few weeks. I didn't have the heart to set them straight. But they are getting it now. I had a therapist phone appointment this week (cancer center counselor) and a doctor appointment by phone next week. The only in-person visit will be my infusion day. Also got pharmacies to deliver, and a tax appointment via Zoom (computer). My yoga studio may offer Zoom classes! I hope they will. I have been walking outside most days and that makes my whole day better. The internet is helping us a lot.
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Just checking in through the mayhem - our local store is stripped pretty bare,but if you get there at the right time you can pick up a few fresh things here or there. My mom taught us kids well, however, and I grew up somewhere where knowing how to isolate for a bit was a skill so I had already stocked up a few weeks ago and we are in good shape between the pantry, freezer, and veg box delivery. I find it fun to see what I can make out of what I've got rolling around and I am pretty sure both of us have lost a bit of weight in the last ten days. I better have kick-ass bloods this month given the variety of home cooking we are consuming!
I am due in for hospital appointments this coming week which ought to be interesting. I go up to the chemo floor for my Lupron injections so it will either be controlled mayhem (usual) or empty (maybe!). Haven't received any guidance so will proceed as normal. My hospital doesn't have a emergency department and only deals with cancer + cardiac so hopefully it won't be as nuts.
My jerkbag neighbors decided to have a party Thursday night starting at 130 am utnil 630 or so. Just such inconsiderate assholes. Cannot wait to move away from them, especially if they continue flouting all this stay at home stuff and have their friends over in their backyard. A neighborhood group has formed and put flyers through the door about who to contact/folks who can help shop for the elderly,etc which has been great to see. Why we ended up living next to the jerks Ill never know.
I hope everyone continues to feel well and takes care of their physical and mental health at this trying time! Its beautifully sunny today (albeit windy) so I am going to take a long walk along the river - the hip exercises have helped immensely! Then its time to make some banana chocolate chip cookies and an Asian stir fry for dinner and maybe work on one of my felting kits.
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