2017 Diagnosed-- A Place To Share "Whats Next"
Comments
-
Georgia1– waving hello! 👋
Trip to MO’s office was odd. Walked in the building where staff in gloves and masks stopped me (and all others, had there been others) to ask questions and take my temperature. I sanitized my hands and put on a face mask.
Walked into the waiting room. Noticed most of the chairs were turned around, facing the wall This left chairs every 6 feet to use. Check in desk was empty. It’s never empty. 5 employees all in face masks but no other patients at the counter I brought my own ink pen. No clipboards handed out.
Waiting room nearly empty. Signs everywhere advising no visitors allowed beyond the waiting room.
MO and staff wearing face masks.
I was told most appointments had been rescheduled but since I am in active treatment I needed to keep my appointment. I was also advised that I am in the danger grouping for Covid-19. I had assumed as much but it was unnerving hearing MO telling me so.
Blood work taken and XGEVA shot given. Now I wait for results. MO said scans in May or June.
Returned home where I will be for a few more weeks. Hunkered down, trying to stay away from the virus.
0 -
DodgersGirl: Wow! Kind of scary these days for anyone needing tests or procedures done. I have/had my yearly mammo scheduled for May but not sure if I'll be getting it with everything shut down. They're only doing critical xrays/mammos/ultrasounds. My sister-in-law needs bloodwork done and is freaking out about having to go in. Don't blame her. It's the silliest things too that we take for granted. Like a hair cut. Not that I have that much but it does look way better when it's cut. Or getting your dog groomed. A friend of mine was going to take her dog to the groomer but now can't. I can groom my own dogs and may have to get the clippers out for my own hair. I need my vehicle serviced but not even sure if they're open and if they are I don't really want to go in. They're saying this could go on until June/July or longer. Yikes!
My friend made it through her surgery. Now for her to recover and pray that it hasn't gone into the lymph nodes.
0 -
Wow, your appointment seems surreal DG. It is good that everyone took so many precautions. Praying for good bloodwork that will allow you to avoid any more appointments for a bit. Hopefully things will calm down before you need your scans.
I have a MO appointment in the 15th that I'm hoping we can do on a video call. I am not even going to go in for bloodwork prior. If he says I need it I will but I think I'm at greater risk going in to get it done since I have been pretty stable and everything feels ok. I'd rather wait it out a month. My BS annual follow up was already rescheduled
Stay safe my friends.
0 -
Legomaster225– my clinic has locations for drive-in blood work labs where you drive in a tent and fully gowned techs come to your car to draw blood. Maybe you could do blood labs like that?
Got a call from MO’s office. Blood numbers are LOW but given ok to take Ibrance cycle 3 soon.
Also, tumor markers are lower, too. Not back to normal range but lower than before. I will take that!
Fighting MBC during Covid-19 is sure not fun.
Bucket list items on hold til it’s safe for me to step outside my home again.
Waving to you all. Hope everyone is doing ok. I pray for all of us
0 -
Thank you for the update! My backyard is really all that is saving my sanity this week. Lenten Rose is up, azaleas are budding, and the oregano made it through the winter. Sure hope all of you are seeing spring.
0 -
georgia1– hyacinths are in bloom in my front yard. They are DH’s favorite. Love the fragrance!
Yard was mowed this week so spring seems to really be here.
Waiting for the asparagus to start growing.
0 -
Glad to hear things are holding steady for you, Dodge. I'd mow my lawn too, if I could just find it under the snow! Stay inside and stay safe.
0 -
I have to go get my port flushed - will be 8 weeks end of April. Have cancelled my IVIG infusions. I am terrified. I'm hoping it will be clean and sterile like DogerGirl's appt. The office is in the hospital. I hear that everyone has to enter in one entrance, be screened, then sent to the Dr Office. Gloves and my homemade mask (thank you Truman for letting me borrow your bandana)
0 -
rljes- bring your own pen in case you gave to sign in or complete paperwork. Also, consider bringing something wipe down waiting room chairs. I haven’t seen them wiped down between patients in waiting rooms.
Hoping you find your visit for port flush to be as safe as it can be.
0 -
ByHisGraceTwice—. How are you doing with rads?
Thinking of you.
0 -
Thanks for thinking of me DodgersGirl.
Had to miss radiation Thursday and Friday because my reaction to Herceptin on Wednesday gave me a 102.5 fever. RO being safe to make sure fever not connected to Cvirus. I had no more fever but lost a toenail and several days of bad diarrhea. Not as bad as yours, but kept me up all night. Has yours stayed gone?
The toenail thing was weird. It just fell off — the whole thing all the way to the nail bed had lifted off. The index toe is about to do the same thing.
Today‘s radiation went fine. They did some extra imaging to check on progress and all looks good. Four more days, yippee! Will do an echo on Monday to assess heart after the Herceptin.
j
0 -
ByHisGraceTwice— that fever sounds worrisome. Glad your doctors took it seriously.
Ref losing your toenail, I keep thinking I am going to lose one (big toe) from 2017 Taxol but it keeps barely hanging on. In light of the stage 4 fight, I don’t worry about it any longer.
My diarrhea is mostly gone. More like having bouts of loose stools that Imodium handles.
Best of luck on the remaining 4 rad sessions and echo. Please keep us posted
0 -
Hello Dodgers. I was diagnosed in 2016 but wanted to say hello and let you know I was thinking about you!! Great thread !
0 -
Micmel— waving to you! Thanks for posting here.
0 -
Legomaster225–. Here’s hoping your MO visit goes well tomorrow. Let me know how a televisit goes
0 -
Georgia1- definitely spring here. Hyacinths are blooming. Each freeze warning now means covering those new growths.
0 -
ByHisGraceTwice—. Waving to you to see how you are holding up? Thinking if you.
Hugs
0 -
Runor— yard still snow covered where you are??
0 -
Thanks for remembering DG. That was very kind I just finished downloading the software for the online visit tomorrow. I hadad to make sure the kitchen counter was cleared off as most of it shows up in the camera. I tend to use it as my junk mail (among other things) location Not sure how much he can do over video, especially since I did not get my bloodwork done but we will see. I really like my MO so I will be happy to talk to him. Is anyone doing the ABC trial with aspirin? I know he wanted to discuss that with me. I have read up on it a bit and the earlier results seem to show decreased rate of recurrence with those on the aspirin arm of the study. I will see what he has to say about it. I will update you tomorrow.
0 -
Legomaster225–. When I worked from home, I thought about putting up a fake background for all my Zoom meetings.
Wonder if homes of the future will have a green pained wall so we can green screen our selected backgrounds for these types of computer streaming meetings?
Again, good luck today!
0 -
Hi Dodge. Snow mostly gone. Still piles of it where the bulldozer plowed the driveway (we own the bulldozer). The last to go on the lawn is the glacier where it all slides off the metal roof and lands in a pile 6 feet high. We've had a few breezy days and that really speeds the melting. Soon the green explosion will happen. I can feel it in my chest! Wait...that might be my unshaved armpits I'm feeling. Never mind.
How are you keeping these days, Dodge? Lego? Everyone else who had the world stop spinning in 2017. How goes it?0 -
Runor— ha ha ha on the arm pit hair comment! That’s one of the good parts from 2017 BC treatments — underarm hair never really grew back. Sure don’t miss shaving there.
I have my flowering plants under frost blankets right now due to below freezing temps. Radar shows snow. For now, winter hanging on makes it easier to stay inside. Spring fever is real and it’s harder for everyone to heed the CoVid-19 guidance and stay home.
0 -
DodgersGirl — thanks for asking about me.
I have good news to share. Finished Radiation to my lumbar spine on Friday 4/10/20. Had an echo on Monday to assess heart function after first infusion treatment on 4/1/20. All good there.
Have confirmation of a new Medical Oncologist. Am thrilled — I'll see him on the 23rd.
Found out even more underhanded things the other Medical Oncologist had done, besides being incredibly rude to me and dismissive of my concerns which proved well founded during my first infusion on April 1" Said “no" to everything I asked for: extra saline, slower infusion drip and longer time, post saline, Benadryl, Pepcid. He literally said "So what's your point?"
I responded — I don't want to pass out, or go into respiratory failure, or spike a fever which lasts for hours with chills/sweats, throw up my socks and dry heave for hours or have diarrhea for days — all of which are my normal allergic reactions to the animal proteins I'm allergic to. His only response “I've never had anyone react to Herceptin." “Ever had anyone pass out from IVP dye?" “No — well I do. I'm not like everyone else and I asking you for these extras until we find out in twenty minutes." “No"
If there wasn't Caronavirus and me thinking I'd not find another oncologist in the middle of this mess, I would have walked out right then." Instead I began crying and went to the infusion clinic. I felt like a lamb being led to slaughter. The doctor did not speak to me again.
About an hour in I began vomiting violently. When I was vomiting during infusion no zofran was given in the iv, I had to use the ODT pills I'd brought with me because the doctor couldn't be found. I cleared with the chemo nurse before I took anything and every time I took another zofran. It took four (16 mg) of zofran to slow down the vomiting.it transitioned to dry heaves unless I drank water which came right back up. I spent the next 12 hours with 102.5 fever, chills, shakes, sweats, and intermittent vomiting, and diarrhea. (My normal temp is 97.5, so five degrees of fever.) I called the doc ofc, spoke with PA, never heard back from the PA or the doctor.
Two radiation treatments Thurs&Fri had to be postponed because of the allergic reaction. My RO, who is the best, was being cautious, wanting to give my body four days to recover AND because I'd had fever I couldn't pass the Cvirus screening to enter the building
I've since learned the MO falsified my medical records. Said he'd done the things I asked like extra saline, slower drip/longer than normal infusion rate, benadryl, Pepcid, because of my concern for an allergic reaction — none of that was true. I was given zero meds before, during, or after infusion except what I brought with me.
I'm allergic to proteins in some animals and Herceptin is made from Chinese hamster ovary protein. Turned out I wasn't even given the actual Herceptin but a bio similar which is made from mouse protein — Kanjinti (trastuzumab — anns.) May not make a difference to most people, but it might to my body — I'm allergic to bay scallops protein but not sea scallops protein; they're actually two different animals.
ALSO — no clinical studies have been done on these biosimilars except the science methodology is substantially the same in how it's made to get the FDA approved in 2019. Other biosimilars had been approved before Kanjinti but were not routinely used. Five biosimilars to Herceptin were FDA approved in 2019. These biosimilars have not been tested for years in patients like Herceptin to see how or if survival rates improve.
My consent form said Herceptin, not Kanjinti. Ladies, please check and make sure what you're being infused with is what the doctor says you're getting. Real Herceptin does not have the “— anns" after “trastuzumab."
I'm willing to risk heart damage for Herceptin which has been proven for 15 years to work against my HER2 positive IDC. I'm not willing to gamble on an unproven biosimilar.
Please google how this biosimilar is made and how Little was required for FDA approval. Your heart and life are at stake.
He Never Mentioned this as I stressed to him I had great concern about reacting to the infusion specifically because I'd see first hand what mouse protein used in Rituxin does and what horrific allergic reactions a friend (Who is allergic to nothing) had experienced. I was terriified because I who have weirdo allergic reactions to animal proteins which can go as far as passing out and respiratory failure.
Oh — I also found out he'd gone to medical school at American University Of The Caribbean School Of Medicine.
Ladies, please check your doctor's credentials better than I did. This nut was referred to me by another doctor I trusted and respected. I didn't investigate his credentials myself.Sorry to be so long and rambling, but please know I am a happy woman who never has to see that man again.
j
0 -
ByHisGraceTwice- OMG... so very sorry you had to go thru all of this. And thank you for sharing your tragic tail so others can learn from your horror story. There are no words to describe how disgusted I am with your MO
So happy to read you have a new MO.
Keeping you in my prayers. May your new MO kick some cancer’s butt
0 -
ByHisGrace, what a horrible story! I feel angry for you reading that. What a betrayal ! It's a horrible thing to have to face cancer but to learn on top of it all that you can't trust your doctor...that's a double punch to the gut! You should report that guy to whomever you report such things to. Wow. But I am glad that is behind you and I hope that your new onc is more responsive. I also hope that you feel that it is okay to put up your hand and say NO! STOP! I insist (and say this loudly while staring someone straight in the eye) on having (whatever it is you insist on). You get to stand up for yourself as if you are someone important. Because you are.
Dodge, I have a straight line in my armpit. Above it, normal hair growth, below it, no hair growth. Not even 21/2 years later. Now why they couldn't have given a wee zap to the bikini area I don't know. I suggested it. This was not enthusiastically taken up. I am bummed. And hairy.0 -
Armpits- even on my unaffected side, the hair barely grows. LOL about the bikini area. If I had thought about it, I would have asked.
ByHisGrace - so glad you have a new MO. I think you can report the bad one to your state’s medical licensing board.
I went for my 6 month check up. I only saw the physician assistant (I think she is a PA). This was on Thursday afternoon. I checked online for my lab report late Friday afternoon and it still wasn’t up. Typically they call if I have a bad result (usually it’s the liver enzymes). Hopefully, they just aren’t waiting for the MO to review it.I’m trying to stay positive.
I started Raloxifene (generic Evista) in 3/23/20 for the osteoporosis. So far I have not had any side effects. I also bought some super duper vitamins for the bones. My primary physician suggested I wait on the vitamins to see if the Raloxifene causes any side effects. So I am going to start the vitamins ( Strontium and Bone Restore which contains D3, K2, calcium, magnesium oxide, zinc, manganese, silicon and boron) on 4/23.
0 -
Wow! ByHisGrace that sounds like quite an ordeal. I'm sorry you had to go through that, and I am thrilled that you now have a new oncologist. Hopefully this one will be more intelligent and much more accommodating to your allergies. Nobody deserves to suffer for days, especially when you spoke up and asked for modifications to help your situation.
GoKale, I am glad you haven't any issues with the Osteoporosis meds. I have had two years of Reclast infusions and will be rescanned in October. Hoping for improvement. I take Calcium, Vitamin D and Magnesium. I'll look into the other supplements you mentioned.
I had my video appt. with my oncologist and I loved it! The conversation felt just like I was talking to a friend in my kitchen. :-) I am getting enrolled in the ABC Trial this week. I have to go in for an exam which is kind of ironic since I just did an online appointment but it is ok. I am going to the smaller infusion office and not the hospital and will use precautions so I feel ok with it. It will also give me a chance to get my bloodwork done since I skipped out on that last week. I am really hoping I get on the aspirin arm of the study rather than the placebo as previous studies have shown that aspirin does have some benefit as to preventing recurrence. I'd like a chance to prove that right!
The armpit hair conversation makes me smile. I have no hair growth at all on my radiated side. My non radiated side has some growth but not much at all. I do find it difficult to shave sometimes though as my armpit does not flatten normally when I raise my arm after my BMX. Really not a big deal though.
One more thing... Today I received my facemasks from Headcovers Unlimited. They are wonderful. Very good quality and super soft and adjustable. I loved their beanies when I was going through chemo and am very happy with the face masks as well. They were $9.99 USD when I ordered them but I see that they are now $14.99USD. They have an inside pocket for a filter and mine came with one filter. I just ordered replacement filters on Amazon so hopefully those will come soon.
Take care all - enjoy the rest of the weekend. Michelle
0 -
Legomaster225–. Your trial sounds great. Will you know if you are doing the aspirin or placebo while on the trial??
0 -
Unfortunately no. It is a double blind study. Maybe if I have a headache or something and it goes away after I take the pill I might have a clue. Lol. I wonder if there is a simple chemical test that would tell me. 🤷♀️
0 -
LegoMaster: I found when I was taking low dose aspirin that I bruised very easy and the tiniest of cuts would bleed forever. Interesting that they think it will prevent it from coming back.
ByHisGrace: Wow! It definitely makes a difference as to where doctors are trained. I always check whenever I go into a new office. Thanks for the info though. I think if we knew where our drugs come from we'd all stop taking them.How many of our drugs that come from China have ingredients in them that cause cancer? I have a friend who never visits the doctor and refuses to take any drugs. Will probably die of old age around 100.
Runor: Yes, no armpit hair and slow growing leg hair. But also hair on my head grows slooowly. I'm lucky I can do the short hair look. Although with everything closed down because of the virus my pixie cut is looking a bit shabby. And my snow is mostly gone. Just a few spots on the north sides that never get any sun and that yucky brown crap leftover that they put on the roads to keep people from slip sliding into one another. City sweepers are out cleaning up the streets this week.
Wondering when all this virus is over which comes first, hairdresser, eye doctor, dentist, mammogram and bone density, blood work. Hairdresser! Yup, she'll be the first call I make. Priorities.
0
