Topic: 2017 Diagnosed-- A Place To Share "What's Next"

May 2, 2020 07:39AM DodgersGirl wrote:

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.

May 2, 2020 12:06PM - edited May 2, 2020 12:12PM by ByHisGraceTwice

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

May 2, 2020 05:13PM - edited May 2, 2020 05:23PM by ByHisGraceTwice

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

May 5, 2020 08:28AM DodgersGirl wrote:

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

May 5, 2020 12:38PM DodgersGirl wrote:

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.

May 5, 2020 03:49PM DodgersGirl wrote:

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

May 6, 2020 12:30AM runor wrote:

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.

May 6, 2020 12:16PM DodgersGirl wrote:

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

May 6, 2020 04:13PM Legomaster225 wrote:

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.

May 6, 2020 08:06PM - edited May 8, 2020 11:24AM by ByHisGraceTwice

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.

🌈

j

May 7, 2020 11:00AM DodgersGirl wrote:

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

May 8, 2020 12:12PM - edited May 8, 2020 12:14PM by ByHisGraceTwice

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 🐁 0

Stuffed 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.

🌈

j

May 8, 2020 02:50PM DodgersGirl wrote:

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!!

May 12, 2020 03:15PM DodgersGirl wrote:

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.

May 12, 2020 06:47PM Georgia1 wrote:

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.