2017 Diagnosed-- A Place To Share "Whats Next"
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Runor— I hadn’t thought about chin hairs hiding behind a face mask. Maybe I should wear a bandana like bank robbers from the wild west. Think how long a rogue hair could get and still be hidden from the public world! Ha ha ha
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Legomaster225– thanks for the reminder about Headcovers Unlimited. I am trying to decide which face mask I am going to order/try
I am really torn on wearing a face mask. I know if the mask worn is not N95 or higher, it isn’t designed to protect me, the mask is to protect others from my sneezes, coughs, droplets. I have asthma and struggle breathing with a mask.
Honestly, I am home bound during this pandemic so am not out among people right now but I do have 3 scheduled medical appointments this month.
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ByHisGraceTwice— sorry to read about progression in your latest scan. I have read on here (BCO) that the tumors have to be so big to be seen. If that’s true, then the growth may be slower than you think. (Trying to find the good in the not-good).
I know your treatment plan will be Taxol and the real herceptin. Question: are you getting bone strengthening meds? I get an XGEVA shot monthly. The thought is the stronger my bones, the harder it is for cancer to grow. Wondered if you have something similar?
You mentioned the weird sensation that felt like water that rushes to your girl parts. Every time I have contrast, they tell me, “you will feel like you are going to pee your pants”. Sounds like what you experienced. It is an odd sensation.
You mentioned finding this thread is a God thing. I calll feelings like that God-incidences like coincidences. I hope everyone here knows how important sharing and caring is to me.
Let me know how your DIY project for your GrandChuckles goes.
I am starting my weekend waiting on a grocery delivery. Such a fun game (not). Waiting to see what’s missing (not in stock). Then wiping down each item before bringing them inside.
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DodgersGirl — tumor size. Learned this when melanoma didn't show on PET taken two weeks before. CT will pick up 1.0 cm, PET 0.5 cm, don't know this info on MRI. My melanoma was 0.4 cm, These new Mets should be on the smaller side.
The first one in the left acetabulum was compared to a 3" x 5" index card. That was a blessing. It's what weakened it so much it broke as I was putting on my pants just before leaving for the airport in late Sept. Would have been picked up in my routine six months CTs done in August, but a mistake left pelvis off the order. Chest and abdomen were done.
If I'd gone to doc instead of the airport, immediate surgery would have been done. I didn't get back home for five weeks. Then went to doc. Fractures were healing well. So no surgery, just radiation for the met. I stayed on crutches and mostly bed rest for next five months and now walk great without cane or any problems. I am blessed.
Bone strengthener— not yet. Have dental issues which need attention first. Waiting for dentist to reopen; not a Cvirus emergency. Also jaw damage from old car crash, potential higher for jaw crumbling and ONJ side effects. Old MO sent me for consult with Head Neck Jaw Onc in Dec ... did an MRI, but that doc never returned calls from my dentist or MO.
CT contrast water rushing. My feeling is more like the warm water exits my body after traveling down my back and then is poured on the outside of my girly bits, disappearing as it would through a hole in the table instead of getting the sheet wet. Weird, one of a kind sensation which lasts for a fraction of a second. I wondered if hand and arm opposite iv hand had any connection to port install. Nurse and I couldn't think of any reason it would.
Hope all the things on your grocery list get delivered.
Your caring, loving nature come through your posts to everyone. I am grateful you started this thread. Thank you. I and many others have received great info and support from your efforts.
j
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ByHisGraceTwice—- grocery order was really disappointing this morning. Was supposed to be delivered between 8 am and 9 am but didn’t show up until almost 1015 am. Out of an $89 order, I received $36 worth. Sigh.
Wow, your hip fracture and recovery sounds like something I hope to not duplicate. Can’t imagine what you endured. My mets in both acetabulums were so painful. Rads made a big difference.
When do you start Taxol?
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runor and DodgersGirl — do I have a hair to pick with you two! LOL Really need to say thank you. All this chinny chin chin talk had me checking in the lighted mirror this morning. Land o Lakes, there was one in a new spot under my chin, almost on my neck — two inches long, but gratefully light blond not witchy black. Not there now. HaHaHa
DodgersGirl — disappointing to spend so much time doing an order and have so little of it show up. Need some flour? I have an extra pound or 20. 😃
No Taxol date yet. Nurse offered again to do Thursday with the first “real Herceptin," but I declined. I want to do the H by itself so I know how I react. We'll schedule Taxol on Thursday. Doc wants it no more than five days after H. He expected new mets on yesterday's CTs, so no change to treatment plan of 12 T with H.
The met didn't hurt. Had no pain until I broke myself. The acetabulum fracture pain was getting better more so after I got crutches, then they pulled out three plugs for biopsy and OUCH again. Mercifully after the biopsies pain got better, the met didn't hurt or was better from the radiation.
None of my doctors can believe I walked on it for five weeks. After seeing my auntie for her 89th birthday, I was on an RV trip from Boston to Dallas with a friend who just retired, a pediatrician from Honolulu. Thought if there's a real issue, I'll be with a doctor.
Forgot my friend's pain personality — over age 12 gets no sympathy. She's also a triathlete — pain means nothing. She had me on the floor rolling on a hard foam roller to roll out the trigger spasms. I kept telling her the pain was too deep for the foam roller. Of course, I said this with my back to her so she wouldn't see the tears streaming down my face. We both finally decided the problem was in my ileosoas muscle. Wrong ... neither of us suspected a fracture. “If it was broken, you couldn't walk on it." She had a tens unit which helped a lot.
It's funny now, but I was climbing up and down stadium like stairs to go underground to get on cave boat tours. Took a while, but I did it. The worst was an old school bus without shocks that took us through a natural wildlife park for hours. That should have been on funniest home videos — the contortions I put my body into when I saw a bump coming. 😂 yes laughing with tears of anguish.
To get in bed, I couldn't lift a leg to climb in. I'm so short, I stood on my tippy toes and literally just fell forward. Face plant. Took several minutes to recover from the pain to drag myself up further into the bed. I was so grateful she gave me her bed and she slept in the loft over the front seats. No way I could have climbed a ladder. Didn't know until we got to Dallas she had a small step stool in an outside compartment. That would have been useful. She didn't know I was doing the face plant to get in bed. 😱
I'm proud to say, I now have her everlasting respect. Promised she'd never call me a wimp again. LOL
j
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ByHisGraceTwice—- not to minimize the events you wrote about, but gotta say that the face plant paragraph was hilarious. Now each night I climb into bed, I visualize you face planting into your travel bed and then working so hard to get into bed. Painful it must have been.... but those words “face plant” comes to mind each time I get into bed, chuckling
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Tomorrow I have a follow up with Gynecologist Oncologist. It’s a 2 year follow up from hysterectomy in 2018. It’s just a simple check up but I am concerned. Not sure how my back mets will respond to the position needed for this follow up. Right now most of the bone mets pain from my spine are well controlled via pain meds. Hoping tomorrow doesn’t mess with that.
Then next week are my quarterly scans. Anxiety is building. My tumor markers from last MO appointment are lower once again. The scans will either show us that my tumor markers are a dependable indicator as to the state of my bone tumors or we learn that scans do not match tumor markers. Hoping for scans to show tumors shrinking or at least shows stable
The week after scans will be mammogram that was rescheduled from March.
The week after the mammogram is next MO appointment. TOO many appointments in May
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DodgersGirl — not to worry, I was giggling as I wrote about it. Give it a try — one requirement is your knees must make it all the way onto the bed when you face plant or all is lost. You’ll have to roll over and off the side of the bed and start again. I’m so happy it made you laugh too. I think about the whole trip now ... what a hilarious chapter of my life was created out of so much pain. Precious memories arose from ashes like a Phoenix.
Hope all goes well with the onco gyn tomorrow. You said quarterly scans next week. Are these the first since stage 4 met dx in Dec?
Oh — I have good news. My state now allows dentists to reopen on a limited basis. I’m going next week. The head/neck/jaw onc I consulted in Dec responded straightaway to my dentist’s call yesterday and gave the ok. My old MO told me had not responded for three months. 🤔 No problem he said for me to do the Herceptin&Taxol AND after my mouth heals, I can take a bone strengthener which might 🙏 help slow the progression of the mets.
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j
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ByHisGraceTwice—- that is great news about the dentist! Good luck
Ref my scans, I had a bunch of MRIs and PET scan when first diagnosed. In Feb, I had CT scans and nuclear bone scan to be my baseline scans. Scans next week will be first to verify that Ibrance is working. Tumor markers taken last week continue to show a reduction in numbers.
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DG - did you have any new mets show on the Feb CTs which weren't there in Dec?
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j
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ByHisGraceTwice— before my Feb scans my MO told me to expect to see progression from December scans since I had not started treatments other than radiation. RO and MO both told me to wait 1-2 weeks after rads before starting Ibrance. I finished rads the end of January. That’s when the big D started. I did start Letrozole in January. And did start Ibrance a week or so before landing in hospital in February. Ibrance was stopped while in the hospital. Was back on Ibrance a couple of weeks before Feb scans.
To answer your question I was told MO was surprised that I was stable and nothing showed growth or new spots. I have lots of bone mets. Seems they are everywhere in my bones
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DodgersGirl — thought about you when doing the tele chemo class today. The Nurse Practitioner said take chemo diarrhea seriously ... it's different than normal d and quickly can lead to dehydration and electrolyte imbalance. In my mind I added, and can put you in the hospital like DG.
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j
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You've got a lot on your plate, Dodge. I have my fingers crossed and once you've gotent through all these upcoming appts, I hope you can breathe a sigh of releif and say, thank god that's over with! In your pocket the whole way.
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ByHisGraceTwice— that welchol they gave me in the hospital is a repurposed med used for chemo and rad induced diarrhea. People here will get tired of me posting my story but that old cholesterol med is the only thing that got the big D under control. I feel it’s my duty to share that story to help others.
Runor— thanks! I slept all night last night in bed. Only 2nd time for that in a while. Really dreading today’s doctor’s appointment. I know with all that is going on, this appointment should be a nothing burger. It’s just a 2 year follow up of a 2018 surgery. But lying on the hard metal table will hurt my back. And assuming the position for an internal exam won’t be easy on my hip mets. Just want it to be over
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home from Gynecologist oncologist appt. Appointment went well. All looks good. They helped me onto that hard metal table and helped my feet into the stirrups. I wore a lidocaine patch on my back to help.
No more appointments. Usually they would schedule another follow up appointment for 2 years out but said my quarterly scans would show anything so no more follow up appointments
Home now. Back is tender and hip is complaining. But not too loudly
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DodgersGirl — good news!
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j
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Wow, I haven't been on this site for quite a while. I feel like I have missed so much. ByHisGrace and DG - you both have been through so much time lately. Praying everything falls into place and the chemo starts helping. Praying the Ibrance is working wonders in you DG. Glad the tumor markers are down a bit. Hoping the scans next week show stable or better! Glad the Gyn Onc appointment went well!
BHG- I hope your side effects are limited as well. I had no issue with Taxol, but is sounds like DG did. My hair actually started growing back by week 5. SImilar to DG, I did ice my hands and my feet during infusion to reduce neuropathy. I bought cold therapy slippers on amazon and used bags of ice or frozen water bottles for my hands. It did seem to work. The Benedryl knocked me out too. I guess I am very sensitive to it, which is actually very helpful when I can't sleep. Sorry to hear of your progression but hopefully the meds will help knock it back.
I will try to keep up with everyone a bit better. We need to be here to support each other and I am sorry I have been missing so much.
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Legomaster225–. Hello! Always great to hear from you.
How are you doing?
How long is your ABC trial?
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Hi Legomaster225 — my cancer journey began about when y'all's did, but I'm fairly new to this community. I'm so grateful ... the kindness and experience which have been shared have helped me oh so very much. How are you?
It's been nice to tell stories of some of the funny things which have come with the physical pain — “real people" don't always get it. I'm still laughing about DG ending a few of her evenings with the image of me face planting when my acetabulum was broken. 🤣
My MO wants hands/feet iced during Taxol. I've been looking on Amazon. As usual too many choices. Could you share which cold therapy slippers you chose, please? Thank you.
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j
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Vitamins for bones - I mentioned a while back that I started Raloxifene which is generic Evista for my recently diagnosed osteoporosis. Doc suggested I wait a bit before starting the vitamins so I could determine what side effects I might have from Raloxifene. Started Raloxifene on 3/23 and then started the vitamins on 4/23. So far everything is fine with both.
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GoKale4320– thanks for the update. I have recently re-introduced many of my supplements, too. While in the hospital in February, I was off all my supplements until big D was under control. After being released from hospital, I was focused on being able to eat. Funny thing, I would feel nauseous at the thought of swallowing pills so I took only those prescribed and none of the supplements. Finally feeling more normal so restarted most supplements. Will see if I have more energy taking B vitamins again
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ByHisGraceTwice— is today the start of chemo or next Thursday??
If it was today, hope it was uneventful
Ref icing for Taxol, I used the socks with ice pads found on Amazon for my feet. I bought 2 sets of extra pads, too. Found the pads cold lasted about 20 min. We did bring a small ice chest with frozen Blue Ice to keep the feet pads frozen
For my hands I brought 2 wash clothes, 4 ziplock like bags (I actually used silicone reusable bags),4 food safe plastic hand gloves, and Velcro bands. To ice my hands we folded the washcloths and made 2 pads to ice on. The washcloths were there for any melting ice leaks. We filled 4 ziplock bags with ice and flattened them before sealing. Put 2 plastic gloves on each hand and secured the gloves with a Velcro band. This was to keep any moisture out AND to insulate my skin a bit from the ice. I can get painful due to how cold ice is.
Place folded washcloths on the table. Place a bag of ice on washcloths. Then laid my hands on the ice. Next placed another bag of ice on the top so that both sides of my hands were covered with ice.
My infusion center has an ice machine so we used that to fill the ziplock bags instead of bringing ice from hon
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I am beyond thrilled.
Yesterday, May 7, was the first infusion of “real Herceptin." The difference from Kanjinti on April 1, was night and day.
Herceptin Hamsters 🐹 1
Kanjinti Mice 🐁 0Stuffed up nose and some asthma wheezing. Tired from the long day and not sleeping well the night before. Saline spray and Vick's helped unstuff nose a wee bit. Wheezing gone after I did a nebulizer treatment. Felt rested when I woke up this morning. Nose still stuffy, no wheezing. Embarrassed to mention because these things are so trivial they don't seem like side effects.
Quite a few labs were off, especially liver functions.
DodgersGirl — Taxol pushed back from Thurs 5/14 to Tues 5/19 to give my mouth time to recover from dental work to be done Tues 5/12. Thank you for the hands/feet icing tips.
How's your back feeling? Improving I hope after the trek up the OB/GYN table mountain.
Hope everyone has a wonderful weekend.
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j
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https://www.amazon.com/NatraCure-Cold-Therapy-Sock...=sr_1_1_sspa?crid=192ZZDOGNMBYJ&dchild=1&keywords=cold+therapy+socks+for+women&qid=1588966712&sprefix=cold+ther%2Caps%2C196&sr=8-1-spons&psc=1&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUEzT05NUFVaWUpWSThOJmVuY3J5cHRlZElkPUEwMTkxNjgxQU40UUUyTjZJVzZaJmVuY3J5cHRlZEFkSWQ9QTAxMjQwNTIySTlTSUpKWDc3MTdBJndpZGdldE5hbWU9c3BfYXRmJmFjdGlvbj1jbGlja1JlZGlyZWN0JmRvTm90TG9nQ2xpY2s9dHJ1ZQ==
Here is the link to the cold socks I used. Like DodgersGirl, I also had a few extra gel packs that I used when they got too warm. It seemed to work for me.
No side effect is too trivial. You can at least mention it to the nurses next time and see what they say. I recall taking Claritin for a few days when I was on Adriamycin but I think it was more for the Neulasta and potential bone pain that could occur (I never notice any bone pain). Maybe there is some trick they have for Herceptin too? Some of the nurses are really good and have seen it all. It is worth a mention.
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ByHisGraceTwice— agree with Legomaster225, no SE is small. The dry sinuses were really annoying to me during chemo.
Really glad the real Herceptin was easier to take. That is a huge improvement. Go go go. You got this!!
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DodgersGirl — how's this iBrance cycle going?
Legomaster225 — thank you for the link to the cold therapy socks and the side effects tips.
Hello All — slow rainy day here today. Terrific to snuggle in after this morning's dentist visit. This Cvirus had all dentist offices closed here for the last couple months. My problem was priority but not emergency so I had to wait —- ugh. After my mouth quits hurting from this morning's work and the stitches come out, all will be so much better.
My dentist's cousin is a medical oncologist at a big, well respected cancer facility. He told me something he'd learned recently from his cousin I'd never heard before. Hair does not grow when one is sleeping. New research reveals if chemo is infused at night, hair loss is reduced. Anyone else heard of this?
I've been thrilled with the new MO's follow up. Several phone calls to check on me — the Infusion Clinic Nurse, the Nurse Practitioner chemo class teacher, and the MO's nurse. What a delightful difference!
They're not perfect, but I'm grateful there was a scheduling snafu. It moved chemo from this Thurs to Tues 5/19. It will give my mouth longer to heal.
It will be a long day. They'll do 90 minutes infusion of Herceptin first, then 20 minutes each of the premeds (steroid and Famotine,) and then 60 or 90 minutes of Taxol.
Hope everyone has a good week!
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j
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ByHisGraceTwice— glad you could finally get your dental issues worked on. Hope it all heals quickly.
You mentioned a theory that chemo given at night might gave an impact on hair. There is a whole theory piece on chemo given at night and benefits of doing so. I asked my oncologist (at the time.... she has since retired) if there could be something to that theory. I think my question offended her which wasn’t my goal. I am just trying to stay alive as long as possible and all paths that can give me that are worth learning about. I think there is an oncologist in Chicago who practice s this “time” theory (name might be Dr Block????)
My scans are tomorrow. I am tensing up as they approach. Scanxiety for sure.
Ibrance 4th cycle lower dose is better to me so far. Sleeping at night and no mouth sores. Still have swollen feet at end of day though.
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in your pocket and holding your hand tomorrow DG 😊
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DodgersGirl, hello again and best wishes for the scans tomorrow. I haven't been checking in lately - still working full-time from home - but it was nice to catch up on you all tonight. DG, you asked about my azaleas and lenten roses so I've attached a photo. The azaleas were gorgeous when this was taken two weeks ago, but the polar vortex brought us cold and rain and now they are bedraggled. Lenten roses still look great tho and will for most of the summer; that's why I love them -- they come up so early and last so long. And you all made me laugh about the chin hair! At my last dermatologist appointment I asked about a small milia and the tech gave me grief about having a magnifying mirror at home. I came THIS CLOSE to saying "if you were post-menopausal and had such unpredictable facial hair you would too!" But I didn't want to sound even battier then he already thought I was.
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