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

May 12, 2020 04:57PM - edited May 12, 2020 05:00PM by ByHisGraceTwice

DodgersGirl — Are your scans tomorrow morning or afternoon? I'll send some extra good wishes and prayers. Remember when your anxiety gets high, just put your hand on your cheek and you'll feel a big hug. How long after the scans does it usually take before you get results? Grateful this iBrance cycle isn't putting you in the ditch like the last one. Sleeping is so much a part of feeling better and healing. Sore mouth, did you have problems with it during your initial diagnosis chemos? I had something similar to chemo mouth twice before and never want again. Was prescribed two different steroid inhalers for my asthma. Did every precaution was told to do. Got thrush after the first one. Threw the inhaler in the trash. Prescribed the second one ... thrush again. Nope, I'll just wheeze. Land O Lakes —- so painful. Cannot imagine how awful it feels to have other chemo side effects AND a mouth screaming with pain — or — the little nursing babies who get thrush. “They say" babies don't have taste buds or real feelings in their mouths and I sincerely hope it's true. Swollen feet ... does elevating them occasionally through the day help at all?

Georgia1 — your azaleas are stunning!

🌈

j

May 12, 2020 08:51PM DodgersGirl wrote:

Thanks for filling up my pockets tomorrow!!

Wonder if I have to keep a mask on while doing these tests? I find breathing to be restricted by the mask

I have to drink 32 ounces of water an hour before one of the CT scans. It’s supposed to make it easier for them to view the bladder. I have 3 CT scans in the morning along with a nuclear med pushed in the morning, followed by a bone scan in the afternoon. Makes for a long day.

Then I start the waiting game for results. They won’t appear in my patient port until MO has signed off on them. That could take 2 weeks. My next MO appointment is in 2 weeks. Sometimes MO signs them early. They are ready the same day they are done by radiology.

Next week is my yearly mammogram. Really don’t understand why mammograms are still done when Stage 4????

May 12, 2020 09:04PM DodgersGirl wrote:

ByHisGraceTwice— I did have mouth sores with my 2017 treatments. I found KankAid worked really well. I was told to avoid hot beverages during my clinical trial. When I had hot chocolate in spite of the directions, I did have mouth sores. With Ibrance, had mouth sores while taking 125 MG.

Ref swollen feet, doesn’t seem to matter whether I keep my feet elevated during the day or I stay on my feet all day, by evening they are swollen. Less swollen since reducing Ibrance dosage. MO is aware and it monitoring.

May 13, 2020 05:40AM - edited May 13, 2020 05:40AM by ByHisGraceTwice

Legomaster225 — I didn't get mouth sores from chemo, I got Thrush from two steroid inhalers my asthma doc prescribed. Adore your idea of drinking a slushee during my first Taxol infusion next week. There's a 7-11 on the way to the hospital complex.

I'm going to look like I'm moving in. I'll use a small suitcase on wheels to roll in all the foot/hand and ice pads, snacks, drinks, etc. Or might I might get and freeze a slushee the night before so it will be ready to drink a couple hours after I get there. Labs, doctor visit, waiting for chemo pharmacy to mix and then infusing the Herceptin took from 8:30 to 2:45 last week. So won't need the slushee until then. Whew, not having a friend with us to help takes some extra planning.

Sleeping through chemo at night — don't know if I could. I fall asleep in MRIs. Not a good thing because when I doze off, I move and the sequence has to begin again.

DodgersGirl — I'll look into Kankaide. Thanks for the hot choc tip. I was thinking about taking a thermos in case I needed warming up from the inside since hands/feet would be in ice and then going back to ice chips. Thanks to you, I know to avoid hot drinks.

Thinking of you and your scans today! 🙏 I also have to drink all that water but nothing else to eat/drink for two hours before. When I did my CTs two weeks ago they had me keep on the mask.

Hope everyone has a great day. Mine is beginning with far less mouth pain from yesterday's dental work. Kept me awake most of last night so I'll be looking forward to some serious naps today.

🌈

j

May 13, 2020 10:59AM DodgersGirl wrote:

CT scans are over. Have to go back this afternoon for bone scan.

Worse CT scans ever. Neither tech was interested in helping me get situated like they wanted on the hard metal board. They told me I would have to get my left arm over my head. I told them I would try but I have cancer in the shoulder area and it HURTS. Usually, the techs are compassionate and work with to find a place for my arm. These techs literally told me I have to make an effort to do what they asked for. Me: ???? I tried everything they asked me to do. It just took a minute for me to move left arm where they needed it.

OMG was I hurting when I left. And I have to go back in a few minutes.

Sad face sigh

May 13, 2020 02:45PM runor wrote:

Dodge, it upsets me to read about techs who lack compassion! Some people need to rethink their career choices! I hope you have a way to get the pain to ease off and do chill this evening. Let out a breath. I know you have no results yet but at least the damn tests are over! HUgs.

May 13, 2020 05:01PM Georgia1 wrote:

Ugh, DodgersGirl. Hope you enjoy the takeout ans get a good, long, peaceful, rejuvenating sleep tonight. Sounds like a wretched day.

May 14, 2020 07:38AM DodgersGirl wrote:

Good morning!

Feel so much better after sleeping all night

Lower back still hurts from all the twisting during yesterday’s tests.

Ref the CT techs yesterday - maybe they were “fill in” techs? Seeing that a lot with nurses so maybe techs are pulled from other spots? And lots of people get CT scans so it isn’t like they deal with terminal patients all day. And of course, they could have been having.a bad day.

I also realize I am way more sensitive to words spoken to me. Everything the tech asked me to do hurt but I still did it (albeit slower than a healthy patient) so I was caught off guard when she told be I had to make an effort for them. I saw the whole appointment as me making an effort

Moving on. Hoping for better techs next time.

Thanks everyone for being here.

May 17, 2020 05:55AM Georgia1 wrote:

ByHisGrace, you are right about the azaleas. The ones in my front yard, which are the "bedraggled" ones, always bloom first. But I have three in a shadier spot in the back yard that are just budding now. And meanwhile out front the lovely irises are up. So pretty and hopeful!

This entire quarantine is awful, but in the "small victories" department I'm so glad that scientists are starting to learn more about how the virus spreads. Since some states are reopening so fast it's really up to us to limit contact to very short periods of time, wear masks when we may not be able to stay six feet away from other people, and have contact outside rather than inside when possible. I have a dear friend nearby with Stage IV breast cancer, and I worry for her and for all of you. But a spring garden is a nice distraction.

Happy Sunday to all.

May 19, 2020 10:16PM - edited May 19, 2020 10:17PM by ByHisGraceTwice

DodgersGirl — thank you for thinking of me and being in my pocket. I couldn't have asked for the day to go better. Labs improved, chest X-ray no evidence of a problem.

Have you heard yet the results from your scans?

I'm having almost no reaction to any of the meds infused today. Everything went like clockwork. I was out of there two hours earlier than I expected. Still a long day — from 8 am to 4 pm, but that includes labs, X-rays, doctor visit, and infusing five iv bags, and setting me up to ice hands/feet 15 min before and after and during Taxol infusion. MO's instructions.

I just posted a novel about my Herceptin saga in a new thread created by UnrealTarHeel from the May 2020 Chemo group. Herceptin being substituted with a biosimilar is becoming a recurring problem for we HER2+ gals. Her MO used another Herceptin biosimilar named Ogivri.

Here's the link. The moderators are interested and are exploring updating and doing another educational article on biosimilars.

https://community.breastcancer.org/forum/80/topics/876380?page=1#idx_6

🌈

j

May 20, 2020 03:47PM - edited May 20, 2020 03:48PM by Georgia1

Hi ByHisGraceTwice, and I'm so glad your long day went well. My friend's breast cancer recurred in the same breast, then spread to her liver. I forget the meds she is on, but so far the scans have shown that they are working. And she feels so good that she's gone back to full-time work, tho from home of course. Thank you for asking! She's 20 years younger than I am, and thank goodness has a supportive husband and family.

May 21, 2020 04:42PM ByHisGraceTwice wrote:

DodgersGirl — any scans results you want to share?

’m thrilled second day post first full infusion of H and Taxol and I’m still doing great. Some heartburn, hiccups a few times, and a bit odd feeling in my right chest but minor. Did discover a new weird help for the heartburn. I’ve never had heartburn like this so I got cherry jello which I like to drink warm. Saw someone say they added honey to use for sore throats. I thought yuck, but I’ll give it a try. Taste not bad and works. Rather do this than Pepto Bismal which has aspirin in it.

🌈

j

May 23, 2020 01:39PM ByHisGraceTwice wrote:

DodgersGirl — it’s frustrating not being able to compare apples to apples on the scans. Broken collarbone?? No wonder you were having such shoulder pain. Lung scarring can be an inflammation or infection. One time they had me scared silly saying emphysema and it turned out a slight infection which cleared up in a couple weeks. Deep breath and try not to worry too much until you see your MO. 🙏

🌈

j

May 23, 2020 04:35PM - edited May 23, 2020 05:41PM by ByHisGraceTwice

DG — could it be your collarbone didn't fracture until after the Feb scans? Since I have bone mets and osteoporosis I assume I can break anywhere anytime like my acetabulum did which alerted me to the mets. Glad your pain getting better.

I’m thrilled to be doing so well after Tuesday’s first H and Taxol combo. Heartburn in esophagus and stomach junction, sleepy and urine which looks like milk are my only SE. Drinking tons of water clears the urine until the next morning then I start over. Called doc today — antibiotics and omeprazole.

🌈

j

May 23, 2020 07:58PM - edited May 23, 2020 08:02PM by ByHisGraceTwice

DG — suggestion on your acetabulum. Sit down to put on pants. I didn't fall when mine broke, I just had weight on left leg as I put right pants leg on. The met was big 3" x 5". The fracture and met healed well with radiation but I sit to put pants on now as precaution to not do again.

🌈

j