2017 Diagnosed-- A Place To Share "Whats Next"
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Thank you DG and Lego. What kind of ports do y’all have. I’ve seen them called Bard, mini, power. Are these the same thing? Also, I thought they’d go on the right side up by a collarbone, but I read one woman’s was put down by her left breast.
I’m frightened about the possible heart damage from Herceptin but felt a little better after I met with the new cardiologist (mine moved to Johns Hopkins.) He’s ordered an echo for after the first treatment and said no prob to do one every time if we need to.
Have y’all had any doctors cancel appointments because of this Coronavirus? My pulmonary called last night Tocancel my Weds appt and the cardiologist said except for ekgs and echos we’d do everything else by telemedicine.
Again, thank you sooo much for your feedback.
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Mine was a Bard power port and I had it in my left side as well. My initial cancer was on my right. It was placed right near where my bra strap would go and up near my collarbone. I did have an echo with some other heart tests prior to chemo but haven't had one since. The scar after removal is very faint and rarely seen due to where it was placed.
I guess it would make sense that your pulmonary doc would reschedule or do an online visit if you are stable. I'm sure it's all hand on deck for anyone pulmonary related during this crisis.
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Lego — oh you are so right. Hadn’t even thought about the Cvirus respiratory treatment aspects. I thought doc trying to limit his patients’exposure to it. I have severe asthma, another reason because of the Cvirus I haven’t been anywhere except doc ofc s since mid January.
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ByHisGraceTwice—. My port is an Infusa port - Xcela Power Injectable Port It is on my left side as BC was on right side.
At the time it was placed, I marked where my bra strap would be so it could be placed so as not to interfere with my bra.
Regarding CoVid-19: I am going to call MO tomorrow to see about moving my mammogram from this week. Trying to stay home right now.
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Mammogram scheduled for this week has been rescheduled due to Covid-19.
My plan was to call MO yesterday to see if I should reschedule but before I could make that call, the breast center called me as they were rescheduling all of this week’s appointments.
Next scheduled doctor’s appointment isn’t until April. Don’t plan on leaving the house until then.
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Yesterday's MRIs revealed mets in L- 2, 3, and 4. I start radiation tomorrow morning. MRIs also showed all cancer radiated in my acetabulum is gone.
♥️🙏🌈DodgersGirl — thx for the bra strap tip. Port placement will be March 25. Good idea to postpone your mammogram. I’m not leaving home either unless absolutely needed. Had to go out today to pick up meds, but I switched to a CVS with a drive up window. Wore a mask and gloves. Will change as many scripts as I can to mail order. How are you feeling? Diarrhea all gone. Not looking forward to starting that up again from the new radiation.
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ByHisGraceTwice—. Sorry you have to have more rads. Hoping it turns out to be just as good at kicking cancer’s butt as it was for your acetabulum area.
I had to pause Ibrance during rads plus wait an extra week after rads before going back on Ib
My diarrhea is much better. More like loose stools 4-6 times a day. Way more manageable and it reacts to Imodium!! RO said 4-8 months for bowels to really heal from rads. At least I can leave the house (well, if Coronavirus wasn’t everywhere) and can eat most foods.
If you have big d from rads, highly recommend welchol pills. Sure helped me a bunch.
I am staying indoors right now. Self quarantined in hopes of avoiding Covid-19. My WBC was 1.0 a few weeks ago (on Ibrance) so I know I am in the danger group.
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DodgersGirl — grateful your diarrhea is calming down. Not familiar with welchol. Confess it made me think of Welch’s grape jelly and alcohol — hehehe — funny combination. Is welchol prescription?
Day two of my new rads, tummy fine — no nausea or diarrhea yet but the fatigue has started. Sad — didn’t start until about day six last time. Two down; thirteen to go.
For the past week I’d felt so good. Doing more than I had in months. Nothing exciting, just opening mail, cleaning house, and tossing out junk. Amazes me ... when I don’t feel well I don’t see the dust or dog hair.
Biggest problem I’m having right now is my oxygen levels. At the cardiologist last week he put a pulsometer on my finger. He left it there for 20 minutes because my O2 saturation level never got above 91. He, PCP, and pulmonologist conferred and said to start nebulizer again and gave me spiriva inhaler thing to do twice a day. Got itup to 94 but should be 98, 99. Makes me nervous with the Cvirus being a respiratory illness.
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ByHisGraceTwice— Welchol is a prescription med it’s original use was to lower cholesterol but it caused constipation so was replaced with the current cholesterol meds. But it is being repurposed as it can control diarrhea caused by radiation and/or chemo. It worked for me. I took 3 pills at breakfast and 3 more at dinner. I took these pills for about a week. Then diarrhea could be controlled with Imodium. You have to take any other meds an hour before welchol doses.
Congrats on doing more and feeling better. Sounds wonderful!!!
Best of luck with your current rads. And hope oxygen saturation climbs higher very soon
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Ladies,
I thought that I would pop in to just say hello!
This coronavirus thing has turned things topsy turvy for me. I just can't seem to catch up with things. I teach university and, as with other schools, in an instant, I had to shift all courses online. It has been daunting--not to mention just the mind-space we have to give to staying safe, given all of the after effects of chemo and other underlying conditions. I've also been trying to support my elderly aunts who are used to being up and about. They are on lockdown in Chicago. One is threatening to break loose and go out, regardless of conditions. The other--88 and usually spry--is just plain depressed. Anyhow. I apologize for just going dark. I've been exhausted...and still am...and need to work this weekend just to stay on top of things. I hope that everyone is safe and doing okay. This is a difficult time for all but even moreso for those of us going through any type of treatment. I hope that treatments have not been delayed for anyone, but I keep hearing that this is true. Forgive me, I've not been able to catch-up on the backlog on the thread.
Stay well!
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Scrafgal—. Best wishes with your job as tasks transfer to online.
We are on lockdown as many are. I am worried about meals. I have food at home but I am I unable to stand in the kitchen to cook. If carry out restaurants are closed, I worry about eating. Scary times.
Sending you well wishes to you and your aunts. How thoughtful you are to try to support them with Chicago on lockdown.
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Yes, I have friends in LA and SF who are on lockdown too. Here in Houston, there are several organizations that have popped up to help those in need. Before things get any worse out there, maybe you could go online (or watch the local news) to find out what might be available. Here in Houston, several stores are doing special things for seniors (senior-only hours, delivery) and other organizations are doing shopping and delivery (not Instacart or Amazon prime but self-mobilized youth groups, for example). I keep wondering if anyone is going to think about cancer patients and others with medical challenges, even if they are not seniors. I am hoping that you find some support where you are!
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On a MUCH lighter note: Here in CT, all hair salons have been ordered closed. I've kept my hair short post TX,and was due for a cut [every 3.5 weeks, quite a change for me!] on Tuesday. As I was just envisioning what I'll look like in a few weeks [Dr. Zorba from Ben Casey MD comes to mind...] it made me laugh at how ridiculously trivial this is - and I credit the resilience we built [and some of us continue to do so] to alter - in a positive way - how we handle life. 'We got this' is the gift that keeps on giving. Now, to dig out my baseball cap collection! Be well, all!!
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Hi DodgersGirl! I sure wish I was geographically close to you so I could bring you some meals. Many restaurants in our area are offering delivery and curbside pickup, just trying to stay in business as long as they can. And many community centers are opening takeaway meal centers since school breakfasts and lunches are no longer offered. Meals on Wheels might be available to you too. You do need to eat protein, so maybe stock up on canned tuna?
If there is anything we can do please let us know.
Thinking of all of you!
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Georgia1–. I have been getting meals from curb side delivery restaurants and groceries delivered to me. This is working well.
But I am worried what happens if state's take the next step and shut down all restaurants. This is not a good time to be dealing with a terminal illness on top of a pandemic.
I did make a meatloaf this week from scratch. It tasted so good but wiped me out. I had to sit down and rest 3 times while putting meatloaf together. And, my left shoulder was really sore the next day. I don't mind trying to cook here and there but worry about having to do that 3 tines a day, every day.
There is a RUMOR that the federal government may shut everyone down next week for 2 weeks. The article doesn't mention restaurants remaining open.
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hello all
Sadly, food will be an increasing problem for many. Here in Dallas we still have grocery delivery by local stores and WalMart. Nashville does not (daughter lives there) and in Tidewater VA the only food I could get for my 89 yr old blind aunt and uncle was through Walmart shipped — very limited availability. Thankfully neighbors brought some essential things in yesterday.
This morning my daughter went to Publix —-
“Went to Publix this morning at 7:30. Very little fresh produce, only 2 doz eggs, 13 loaves of bread, 1 pk of shredded cheese, 14 pjs of butter, very limited canned veg, 0 TP or paper towels, 0 frozen pizzas or veggies. Limit 1 dz eggs, 2 gal milk.
Early 40's man in check out line asked those around him (genuinely concerned, with tears in his eyes) "when do think this will be over?" He only had 4 things (very essential items) in his cart.”
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I'm blessed and grateful yesterday went well.
Did radiation early, before going to hospital for port placement. Pain not bad now unless I forget and reach over for something, but enough it kept me awake last night.
Surgical Oncologist asked if I had a preference for where he put it. I said just away from bra strap. He laughed and said "I learned that lesson a loooong time ago." He put it upper right side under collarbone a bit towards the middle.
This is the third surgery SO's done for me — an open transduodenalspinchteroplasty in 2013 for an obstructed common bile duct, laparoscopic partial mastectomy in 2017, and today's port. Second at this hospital: excellent facility and outstanding surgeon.
Last week, all elective procedures at the hospital were cancelled indefinitely. Only requests for "emergency surgery" can be submitted for scheduling. Every request now is evaluated by the hospital's full medical review board. Nineteen cases were sent to the board for today's schedule. Humbling — ten were rejected; mine was one of nine approved.
With my new power port the hospital sent me home with delicious chicken noodle soup in a bigglass jar, crackers, stainless steel tumbler, and a Diet Coke.
Thank you all for your kind words, sharing your experiences, and support.
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ByHisGraceTwice— here’s to a speedy recovery from port placement.
Ref grocery shopping, DH has been hitting stores during the special senior hours and getting most items on my list. And I used Shopping Angels over the weekend to get items that DH couldn’t get.
My worry is that soon takeout foods will be shut down. Right now cooking isn’t an option for me due to pain. If we can’t bring home dinner, not sure how we will eat. DH can do some cooking but he is already taking care of my dad which is wearing him out. Just hoping take home food remains an option for awhile longer
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DodgersGirl — Here in Dallas as if Tuesday 3/24 midnight everybody put on mandatory shelter in place. No more takeout BUT restaurants may deliver. Many trying to stay in business are starting up delivery services if they didn’t before. No delivery fees.
Our City schools are preparing and distributing prepared lunches for their students in their parking lots. Handing out to people in their cars. Problem is food workers aren’t wearing masks and not observing social distancing. Huge opportunity for hundreds of thousands of community spread encounters.
i live close to a high school and middle school. Emailed my city councilman this morning. We’ll see If anything changes.
Off to radiation.
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Hi everyone: Hope you're all doing well. We're doing our best at self-isolation. There are some people here who've taken it upon themselves to deliver meals to people who can't get out.
A friend of mine just found out this week she has breast cancer. Thinking about all those who are going through chemo and radiation at this time.
Feeling pretty cooped up though. Take care and stay safe.
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pink_is_my_colour: hey, glad to hear from you.
Certainly is an upside down world right now
Wonder if stores will have toilet paper on the shelves anytime soon?
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I am pretty good at self isolating, I live that way most the time. But this last stretch of not leaving the property for days on end, it's getting to be a bit much. I had to go to town today and as I was getting ready I realized how weird it felt to wear pants. Because I haven't had real pants on in days. I've been walking around in these ugly, stretchy things that I wouldn't be caught dead in. Town was a ghost town. In the drugstore a lady at the door, sitting behind a table placed there , plastered with big signs STOP, asked me what I was doing. I was mailing a package. There was another guy at the mail counter 45 feet away and she made me stand at the door until he was gone. They made me pay for my $1.94 stamp with my debit card! Good grief, Canadian money is plastic, you can wash it. (which I've done). There was a very subdued feel in the grocery store as people move out of each other's way, smile, nod, cast our eyes down because we all feel rude and hostile behaving this way. I worry that once triggered this feeling that everyone is a threat, the suspicion and paranoia will not go away. How can it?
Pink_ is _my _colour, you probably still have snow in Edmonton. We do too. It's pretty cold too. I still build a fire in the furnace every morning. The one thing I am very grateful for is that I live on forested acreage with endless clean up to do after this snow destroyed so much bush and brush. I can get outside, pick up branches, pile them up, add a little diesel fuel and toss a match. My inner pyromaniac has been waiting for this all winter!0 -
Runor, I had to laugh. That is exactly what my husband and I are doing. Cleaning up our property and burning. We love it and it is great exercise!0
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Note: we just checked and there are some areas with burning restrictions due to
Covid-19.
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Runor: I have a pile of snow in my backyard. We can't shovel anymore snow off the driveway because the piles are too high! Normally at this time of year I can sit on my deck as it faces the south and the snow would be pretty much gone. Gets pretty hot on my deck but not this year. Still too cold. And, they're saying more snow. I'm okay with the isolation because I'm mostly an introvert. But I do need to get outside for a bit of sunshine and some air now and then.
DodgersGirl: I can't believe how much toilet paper people are taking. Even at my worst with chemo and diarrhea I didn't go through that much. Most people might use one, maybe two rolls in a week. A package of 24 would last most people 12 weeks unless you have a family of six then maybe a bit less. Our grocery store shelves were basically empty for almost a week of pasta, soup, flour, canned goods, frozen veggies, meat, soap, hand sanitizer, and of course toilet paper. Just starting to see the shelves being restocked. They just announced today that all non-essential stores are to close. Only thing open is grocery, drug, and gas stations. What can you do!
We made it through chemo and radiation. We can make it through this too
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Peregrine, I heard too there were burning restrictions but when I checked the forest website there was nothing listed.
Pink , we still have at least 50% snow cover, melting off in patches. The banks that were plowed up with the bulldozer are still 6 feet high all over the place and that's after all the melting! I got pretty ticked off by the end of the winter when, exactly like you, my snow heaving was tossing it on a pile that was higher than my own head! Good grief. I told Hub that my big goal by the time I"m 60 is, for the first time in my life, to have COVERED parking. I have had to shovel my vehicle out form under snow every winter for my entire life! I know, first world problems.0 -
pink_is_my_colour — hello, I’m new here. Stage IV bone mets. Condolences for your newly BC diagnosed friend. What a double whammy, the nightmare of Cvirus and now BC. Your friendship is treasured and you’ll be a tremendous resource of info and support. I wish strength for you and your friend.
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ByHisGrace: Thanks. I've tried to ease my friends fears. She's taking it pretty good. Better than I did. I'm praying that she doesn't have to take chemo. April 1 is her surgery date. It's the unknown that scares us. At least I can tell her how my experience was.
Runor: We lost a lot of snow a couple of weeks ago when a chinook blew in. But then we got another big dump. The city piled all the snow into the middle of our cul-de-sac two weeks ago. Came by yesterday with a bulldozer and truck to take it all away. There go my tax dollars. What a waste of money. In three weeks it'll all be melted! Then we'll be left with this awful looking brown stuff on the roads and boulevards.
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pink_is_my_colour— sorry to read that a friend of yours was diagnosed with cancer. Keeping her in my prayers.
I have an MO appointment this week. Will be the first time out of the house and into society since the 1st week of March. Kind of worrisome as we have active cases of Covid-19 in town.
This appointment will also be the first since Stage 4 dx that DH won’t be with me. I am assuming he won’t be allowed in the building with me as I have read so many others post similar results.
Just a monthly visit to get XGEVA shot, blood work, and prescription refills. Hope all goes well.
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Good luck DodgersGirl! We will be rooting for you.
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