2017 Diagnosed-- A Place To Share "Whats Next"
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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!
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j
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I'll be in your pocket tomorrow DG! Praying for good scan results. Deep breath and one day at a time.
Interesting thought about chemo at night. I wouldn't be able to sleep though with people moving around by me though so I would lose any benefit. Lol.
ByHis Grace, have you tried sucking on ice cubes or drinking a slushee/frozen drink during chemo? Not sure if that will help but I always grabbed a big frozen coke on my way the chemo to keep my mouth cold. I did not have mouth sores with my Adriamycin. It may have helped. If not it at least tasted good
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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????
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Georgia1–. Beautiful photo of your flowers. Thanks for sharing
We got hit with the polar vortex, too. DH had just planted sun patiens and gerber daisies. We had to cover them.
Then we planted tomatoes, cucumbers, bell peppers, and egg plants the day before a frost warning.
I think all the plants survived the cold.
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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.
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moth— I think of you often.
How is your clinical trial going?
We have to fight to kick those nasty cancer cells to the curb.
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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.
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j
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ByHisGraceTwice— this is the product I used for mouth sores:
My MO said things like Orajel don’t work on chemo mouth sores. Something about the sore being oral mucositis so orajel doesn’t work
I found that Kank-A actually put a layer of pain relief that stayed in place like a patch.
Hope you are getting lots of naps in today
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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
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Bone scan is over! Techs there were very nice. Helped me off the bench and did not require me to wear a face mask during the test. 25 mins lying down with eyes closed, listening to music.
Still sore from this morning’s CT scans. Lower back and right hip. Hope that reclined in my LazyBoy will be the fix I need.
DH is bringing home dinner so I don’t have to cook tonight.
Oh, my mammogram that was first scheduled in March and moved to next week due to CoVid19 has been rescheduled again to July at a different mammogram center. Said the center I usually go to isn’t scheduling mammograms until October. Wow.
Will be chilling the rest of the even
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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.
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DodgersGirl — Grrr ... those CT techs. Bless your heart. These people work with patients all day long. Not one patient is there just for fun, why they can’t be helpful and kind? ... 😡 hope your shoulder pain has eased off. Grateful the bone scan techs were nicer. The rescheduled mammogram — same with me. They were going to do same week as the CTs, then put off until July. I was thinking anything which would show on a mammogram would show on the chest CT. What do you think?
Thanks for the info on KankAid. I learned the hard way not to use oragel when a filling came out one night and my tooth was hurting. My daughter was teething. Yeow—/ it has sugar or something in it. When it hit my tooth’s nerve thought I needed to peel my head off the ceiling. Thankfully the pain only lasted a few seconds. Whew!
My mouth has eased off from yesterday and I did get some good naps today. Hope you’re doing the same now.
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j
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Ugh, DodgersGirl. Hope you enjoy the takeout ans get a good, long, peaceful, rejuvenating sleep tonight. Sounds like a wretched day.
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Sorry the first techs were not empathetic. Wonder if they are just worried and overworked due to COVID. Not an excuse for not being compassionate though. Glad the scans are over. We will pray for good news.
ByHisGrace have you tried the Biotene mouthrinse and toothpaste? I used that during chemo also. It's ok if you look like you're moving in to the infusion center. Might was well be comfortable while you are sitting for hours. I had a very large tote and a small cooler I brought with me.
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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.
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Legomaster - there was a Biotene sample in the Mother's Day gift tote my darling daughter sent. I'll give it a try. Thank you.
DG — here's an idea; as bad as the CT tech were bad; the scan results will be good! Grateful you rested well last night.
Georgia1 — are your Azaleas bouncing back? I know each flower only blooms once a year, but was hoping some hadn't budded out yet.
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j
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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.
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ByHisGraceTwice— checking in to see how chemo went today? I snuck in your pocket to be near but with social distancing rules, I was too far away to see how you did.
Hoping it was an uneventful day and that you get good sleep tonight
Sending you hugs
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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.
Topic: Please talk to me about Herceptin biosimilars
https://community.breastcancer.org/forum/80/topics/876380?page=1#idx_6
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j
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Georgia1 — I know what you mean. For the first time since mid-January, I went somewhere other than a doctor’s office or a hospital. Lowe’s — my garage refrigerator was fried in last October’s tornado. DD and my GrandChuckles now live far away. I wasn’t using the refrigerator side much anyway. So I’ve been waiting for an appliance sale for an upright freezer. Bingo. It will be here tomorrow.
How is your Stage IV friend? Where are her metastisis, if I may ask? Please feel free to PM me if you’d rather answer privately.
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j
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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.
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Georgia1 — grateful things going well for your friend. Having supportive friends, husbands, and family are essential for us all. Well husbands, I wish, it will be 15 years on the 28th since mine died. 😥 he was very ill for many years from Huntington’s Chorea, a disease worse than death. I miss him desperately but wouldn’t have him back for a moment. We’ll be reunited in Heaven.
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j
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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.
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j
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ByHisGraceTwice— so glad to read you are doing well with your first Taxol. Your cherry jello plus honey is a hack I haven’t read anywhere. Interesting. Thanks for sharing that tip.
Sorry for your loss 15 years ago. 🙏🏻🙏🏻🙏🏻, I can only image what that loss was like. Makes my heart hurt. And scares me as I know one day I will die leaving hubby alone or he will die first, leaving me alone. Scary thoughts. Getting older is not for the faint of heart
I have gotten the scan results in my patient portal but the “findings” is written differently then my other scans making it hard to compare my May scans with Feb scans sigh I think it shows stable bone mets Most surprising was reading about uptake in left shoulder. That was the area that really started hurting while in the hospital in Feb MO had them check that shoulder during Feb bone scan I was told there were mets in the bones on that shoulder RO said he could zap it if I wanted I opted to see what Ibrance could do along with XGEVA shot RO said that was fine and if I changed my mind, just call him. When I was released from hospital, I could barely use my left arm and bring left handed meant I was having trouble brushing my hair and brushing my teeth but I kept using it anyway— didn’t want the shoulder to lock up. It got better and better. Recently though shoulder has been more sore once again. Back to the scans— the bone scan and CT both pointed out the highest uptake from contrast or tracer was in that shoulder. Both reports said that higher uptake was due to a healing fracture in my collarbone.... I have/had a broken collarbone???
CT also mentions scarring in my lungs. No idea what causes that? Radiation? And mentions signs of inflammation in my lungs
I have MO appointment next week for monthly XGEVA shot, bloodwork, and review of scans Hope it’s all status quo and that I will remain on Ibrance/Letrozole
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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. 🙏
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j
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ByHisGraceTwice—. How are you feeling today from your chemo earlier? Still doing well, I hope.
The collarbone break leaves me wondering why neither MO or RO mentioned a risk of a fracture?
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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.
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j
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ByHisGraceTwice— Sure, collarbone could have fractured after Feb scans. Guess I assume RO or MO would have told me that new met was bad enough that the bone could fracture. I had a visit with an orthopedic surgeon after Feb scans to make sure I wasn’t at risk of breaking either acetabulums as both doctor’s were concerned about that. Orthopedic surgeon said I was good to go. He wasn’t asked about my left shoulder. It’s water under the bridge now. Just trying to learn from that fracture so I can better protect myself moving forward.
Hoping you get quick relief with your new side effects from the antibiotic and heartburn meds. And hoping you get thru your next chemo as well as last week’s.
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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.
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j
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ByHisGraceTwice— thanks for the acetabulum tip. Currently, I am standing when I put on pants.
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