Starting Chemo May 2019
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Britt so sorry about sodium but good for us to know. I hate the ER visits. We hope never to return but we r just heading in Monday for #3 AC of 4 after the 11 day delay. It will be interesting to see if the reduce the amount of chemo due to WBC count dropping to zero every time. WBC count drops from day 6 to 9. A friend had her AC reduced by 10% due to neupenia and 4 days in the hospital. She got through all of this and has been cancer free for 7 yrs!!! Happyanyway how is everything after T #1? Praying for everyone. We’ll keep u posted about Monday.
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LaCombattante, the cumulative effects are a pain! I'm glad that you are close to being better.
Katiekins, congrats on the shrinkage! My MO wants to add carboplatin to my Taxol, but I have to see an ENT for tinnitus first.
Jrominger, I'm happy that Nat's tumor is shrinking and not as painful! I meant to comment yesterday. Low blood counts are scary. They were definitely the worst SE of AC for me.
I was a bit nervous before I received my Taxol. It's scary not knowing how one may react to a new treatment. It went really well! I will be monitored closely during my second Taxol, too, as my infusion nurse said sometimes people have an adverse reaction to it.
I wore the cold therapy socks and kept a large ice pack over my hands.
I have a prescription for a steroid and take otc benadryl the night before. I am given both of those in a drip, too, along with nausea and heartburn meds before treatment.
I took Zofran yesterday to be safe. I don't think I need it today.
If I respond well to my next treatment, I will ask if I can reduce the steroid that I take at home. It interferes with my sleep.
UpstateNYer and MountainMia, I hope you feel alright today!
Hang in there, everyone!
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Got home from meeting a school mate (from 40+ years ago) for coffee. Took my scarf off. Felt like I was taking off a mask.
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Mountainmia- glad you had fun with your friend, I would love to be able to take off wig/scarfs on public. Have not had the guts yet to do so😣
Britt- sorry about needing to be hospitalized, bet that was scary. Hope you will do well from here on in
Lacomb- sorry you're dealing with some nasty se's. Part of the process sometimes. Hoping it gets better for you.
I am doing the best yet with my 3rd c/t. I was able to get out and socialize today(day 4), which is great for me. Only issue is constipation now. Fatigue is minor. I thought chemo is supposed to get harder each time. This time MO cut chemo 10% and increased IV fluids during infusion. Perhaps that made a difference? Hopefully se's will not be too bad for my last one in July.
Jrom- thinking of Nat on Monday. Prayers that all goes well and no severe se's or unexpected complications.
Happyanyway- hope your tinnitus will subside and your treatments continue as scheduled.
Hope everyone had a relaxing weekend.
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MountainMia, good for you!
UpstateNYer, I am so pleased that your SE have been better this time.
Jrominger, I'm thinking of Nat and you today.
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Does sucking on ice chips during taxotere infusion help with mouth sores?
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Neeli - it helped for me! I didn’t suck on anything my first round and had bad sores and way worse mouth dryness/roughness/taste effects. Couldn’t stand to even have anything in my mouth.
Second round I sucked on ice chips (I even forgot until about 10 minutes into the infusion), and it’s made a huge difference. No sores so far and although my taste still basically sucks, I can at least eat whatever I want. Last round anything that wasn’t pure pudding was unbearable for the first 10-12 days. I also added: (1) Himalayan salt + baking soda rinse multiple times/day, and (2) humidifier at night.
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IM2C- The ice chips thing, did you do it through out the infusion or only during taxotere?
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neelix and Im2c, I only did ice throughout T. I had bad mouth sores starting day 3 at #1 Taxotere, I guess I didnt do enough, #2 t was less, I do my mocha mcfrappe, slushies and or ice chips just throughout Textore, and now throughout my Cyoxtane, (I had 2 rounds TCHP and got switched to 4 AC (Adriamycin & Cyclophosphamide) then 2 THP and then 12 HP ). I had #1/4 AC yesterday, monday.
I also use ice on my hands and feet to prevent neuropathy or losing my discolor or loose finger and toe nails, also have on dark nail polish. There was a trail about nails with icing and dark nail polish and it had significant impact. Of course I cannot find the link now. Sorry,. Some even soak in ACV 1x a day for 10 minutes.
QUESTION: Anybody have acid reflux, I have not had AR since 2014 when I had gastric bypass, woke up at midnight last night with the worst Acid reflux, tried compizine and omeprazole, still got it 6am this morning... so frustrating.
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I didn’t do the ice chips the whole time, just during the T & C (the chemo agents). I’m doing scalp cooling so for me the T &C are the last two drugs I get at the end, back to back.
I had very bad reflux with my first round. My doc called in a prescription strength omeprazole, and it helped. I only take it the first two days after chemo. First thing in the morning on an empty stomach. No reflux after second round. They also gave me Pepcid as a pre-med infusion for my second round.
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My understanding is that acid reflux is quite common as a result of chemo 'attack' on stomach / GI mucosa. I am on Pantoprazole now, as per my oncologist advise. She was even worried about stomach ulcer, causing my anemia.
In my case my red blood cells and hemoglobin were declining steadily chemo after chemo. Yesterday, I got iron IV and EPO to address this; hopefully this will bring the counts back somewhat. My MO also delayed the start of Taxol for eight days, to give my body more time to recover. So I will be joining our weekly Taxol crowd as of July 8, not next week as originally planned.
Jrominger, hopefully all went well with the infusion and Nat is feeling OK.Could be of interest for you: I discussed potential impact of chemo delay (8 days in my case) with my MO and she assured me that it should not increase the risk / reduce chemo efficacy. Quoting her: 'in an unlikely event that something goes terribly later on, it will not be due to the fact that we miss 8 days during six months of treatment'. Note, that I am considered high risk, with recurrence in lymph nodes, but even in my case they consider chemo delay to be acceptable.
Wishing all a very nice day without/ or with very manageable SEs
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Lacombattante, Happyanyway. Thank you for prayers and information. We had a good infusion day yesterday #3 AC. The MO reduced the amount of AC by 20% due to WBC’s always going to zero on the first 2. She also prescribed another antibiotic to take day 4-11 to protect Nat. Minimal side effects so far. Mainly headache and minor nausea. The good news was the MO had difficulty finding Nat’s tumor and measuring it. She said the tumor has flattened out and has reduced at least 50%. We r praying for no more emergency visits or major SE. Our MO also felt that the delay would not be an issue and the 20% reduction should help us get to #4 and then on to T. Everyone has said the weekly T for 12 weeks would be much easier than the AC as far as SE and it should be easier on the blood with perhaps no neulasta.We are praying for everyone here!!
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Happyanyway how are you doing onT #1? We will be looking to you for ice guidance etc. Hoping mtnmia and upstate are at the top of their game today!!
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Neeli, I tried to keep my mouth cold, but found it awkward since I was icing my hands. My sister will be going with me on Friday. She can be my hands!
Kimmh012, I hope your AC SE are minimal.
LaCombattante, sorry about your blood counts. Enjoy the additional week off. Hugs to you!
Jrominger, my MO and infusion nurses said the same thing regarding Taxol being easier. So far, I believe that they are right.
I just got back from my visit with the ENT. I aced my hearing exam. I will acclimate to the tinnitus. There's no reason why carboplatin can't be added. I listen to ocean sounds at night as a distraction. He said to continue to distract myself with noise.
Be well, everyone. As well as can be expected.
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Hi all, checking in here. This AC (3/4) hit me harder than the first two. Finally today I'm feeling something like normal, though still very tired. However, I made biscuits this morning and managed a trip to the grocery, so I'm feeling like I accomplished a lot! And if the day goes well after my nap, I might get a couple of other things done today, too.
HappyAnyway, glad your hearing exam went well.
Kimmh, yes on the acid reflux. Mostly it's just been bouts of burping for me, but definitely a more sensitive gut than usual. I need to take an ibuprofen and have been waiting until some of the GI stuff settles down so I can take it.
Best to all.
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Kimmh012 - why were you switched from TCHP to AC? I am done with 1 cycle and i dont feel any difference in size of tumor. I was thinking of asking AC but my MO said we wouldn't know until 3 cycles atleast.
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hi all-
Jrom- great news about Nat's tumor shrinking and having fewer se's. Hope all continues to go well.
Kimm- how are you feeling today after A/C treatment?
Mountainmia-sorry round 3 has been difficult for you. My 3rd of 4 C/T has been the easiest for me so far. Hoping MO cuts my dosage again for # 4 on July 10th.
Happyanyway- glad your ENT appt. went well and you are able to take the carboplantin. See our prayers do work.
Lacombattant- hope you will be feeling better soon. Warm hugs.
I am continuing doing well with minimal se's compared to first 2 treatments. Only one more to go for me of C/T. Then surgery to clear residual DCIS and then on to radiation.
Prayers and hugs to all.
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I'm so excited for you, UpstateNYer! Please hang around even when you have finished chemo!
Prayers and hugs to you, too!
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I’m so glad you feel so well upstateNYer. And I am with Happyanyway we need you to stick around for awhile. Your prayers and encouragement are special!! I believe the 20% reduction for Natalie is going to help. It just seemed too much for her. Killed everything and lost her hair in 12 days but maybe overkill. Our MO seems to be on top of it all! Nat is napping now but feels very good so far. Neulasta onpro fires off in 4 hrs. How many sessions of radiation will you have UpstateNYer? Blessings and prayers for everyone!!
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hi all - I don't plan on going off this forum when I am finished with C/T. You are all stuck with me.😍 I am always interested in your progress and want to cheer you all on to your NED's. Everyone is so very brave, many going through much worse than me.
Jrom- Glad that Nat got 20% reduction. I am sure it will help. My reduction of 10% seemed to help a lot, plus the extra fluids at infusion and steroids for 4 days after. Wonder why such strong doses are given to start. Good luck with the Neulasta. Not totally sure, but think I will need 3 weeks of radiation after my upcoming 3rd surgery. I first had lumpectomy with IORT (radiation at time of lumpectomy), but margins came back unclear with idc and dcis. After second surgery, still had residual dcis, and was about to have 3rd surgery when surgeon came in and gave me the news of a high onco score. Sooo, surgery was postponed to start chemo right away. This year has been a lot of fun--NOT! No, really not trying to be sarcastic, there are so many folks much worse off than me. I believe in the power of prayer and positive thinking.
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Need some positive thoughts and prayers. Going in for an MRI tomorrow to check on the progress with chemo. I just finished 4 rounds of ac and the tumor is still there. I can not tell if it is shrinking or not.
❤️ To all!!!!
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Warning long drama post....
I am doing mostly okay today, except for the 1am acid reflux and my face flushing, maybe I should get a gel pack to cover my face LOL ... I ice hands and feet but no head cap, to many opinions on that and some research shows when breast cancer mastitis it goes to the brain first.
Upstater, great needs, keep moving forward... i just read several trial reports where the IORT Rad during surgery out weights the MX. I was told I need 3rd surgery, by ex Onc but when new Onc seen all they messed up he is in the fence for Rads and Mx,, said Oncoplastic Reduction, onc surgeon and plastic surgeon same time, has had huge succes.i am still researching. I have not had a ONC score or PET test, new Onc is furious, ugh. No pre MRI or xrays, erc etc . I get them all next week
Jrom, glad Nat has an awesome understanding Onc. Question, since she is getting reduction, will she have to have and an exrra round? Is Nat taking Claritin? I have to do 2 a day for bone pain, previous conditions amplify the pain, so day before, day of and 3 days after I take 2 a day then back down to 1
Neeli....well, where to start... I went with a awesome surgeon, had appt Feb 14th, told her I wanted dmx, she wanted lumpectomy, save the boobies, and do biopsy, blah blah, well there breast Partner with Hemo &Onc so they set me up ... signed my contract for TCHP, Neulesta, then HP 12 months and Rads for 3 weeks..
On treatment 1, 4:15pm, they close at 4;30, I was told to drive back 1.5 hours for a 2 second shot. So I got upset, my insurance denied Neulasta and wanted me to do Udencya a biosimilar, never heard of that word before. So it got hot and heavy discussion, so stressful. waited until 3pm to show up next day for my Neulesta, to be told NO cuz insurance doesn't cover it.. I called BS...had a oom full of thier important people and threw the biosimilar word back at them, 7 ppl in little exam room so told them to get 7 shots and we all take them together, they refused.. I WANT THE BEST FOR ME, told them to take there biosimilar and shove it their tight asses... telling them they Promised to put first, and we had a 'binding' contract.. meanwhile I got mediciad for 2nd insurance, I also got Neulasta/Amgen Patient assistance, etc to pay for erc.. about 7pm they said they calling the cops, I said go ahead whose side do you think they will be on? So they agreed to my Neulasta finally. They care more about $$ then the best treatment for ME, not what everyone else does..then I had to back for reincision cuz margins were only cleared by 1 mm, so another surgery.. follow up on that telling me now no clear margins and I need mastectomy, I said no, you had your chance, knowledge is power.
I know now I don't need masectomy or weeks of Rads with the oncoplastic reduction Particial Mastectomy breast surgery and intraoperative radiotherapy (IORT) which is radiation therapy done during surgery after lumpectomy, I just need to find the surgeons, and NCCC has a team, I might need to travel to another location, that's fine with me.
Found new Onc with a National Comprehensive Cancer Care center, did some more research and for stage 1c, grade 3, 2.4 cm, Idc/dcis, TRIPLE POSITIVE ER & PR 90%, HER2+ (fish) amplified and sentinal node micromets, no BRACH gene's, post menopause, partial hysterectomy 2015...
the AC (Adriamycin and cyclophosphamide) 4 rounds and then 2 round of THP with Texotere, seems to be the best option for me.. . rads and dmx on the bench. My first 2 rounds with ex Onc dodges were sent for NCCC review, new Onc said "dosages were way to high almost lethal."
I usually always get 2-3-4 opinions but I trusted my surgeon and she trusted this ex Onc, never again.
Sorry if I missed anyone...
POSITIVE ENERGY FOR ALL OF US!!
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G1973, positive thoughts and prayers are headed your way. And hugs.
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UpstateNyer, 3 weeks of radiation doesn't seem too long!! Every day, Mon-Fri? They say here at CTCA the radiation only takes about 10 min/day. Our friend who went through this 2 years ago, did the 6 weeks of radiation and said she felt very good during it all and went walking every day after treatment and then out to dinner!! Praying for you that all goes extremely well with PCR/NED very near in your future. God Bless!
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Kimm012, What a horrible ordeal. I am so sorry. Insurance is a nightmare sometimes. We may be getting a big bill because the anesthesiologist may have been out of BC/BS network. We'll see. It takes a long time to process the insurance. When it is time for DMSX we'll see if they have a in network anesthesiologist available. That won't be until late October. Hang tough!! Praying for you. We don't believe she will have to have a 5th AC, the amount was just to high for her. We will then do 12 weekly Taxols.
G1973, praying that the MRI will show some positive shrinkage and be better than you may think!! I will continue to pray for everyone. Keep us posted.
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Neeli,I had the same issue after my first TX with TCHP. It was the post medication that seemed to be causing the horrendous constipation. The only thing that eventually worked was an enema. Sorry 😐 I did drink a lot of prune juice to keep things moving after that. Now I'm 6 days out and have the opposite problem... uhhhhh. But after the constipation and pain for 3 days I'm tentative to take anything just yet. Thought I'd look into some binding foods first and see how it goes.
I hope you found some relief!
Sending you good thoughts and energy.
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G1973--prayers, warm hugs, and positive thoughts coming your way. Keep us posted.
Jrom- yes, rads should not be too bad, compared to the chemo of course. Thanks for your prayers and kind words. Nat is in my prayers daily as well. What wonderful support to have in this forum
Kim- you have been through so much, but seems you did a great job in advocating for yourself. I think you are in good hands now, thank God for that. Hope your acid reflux subsides soon.
Happyanyway and mountainmia- how are you feeling today?
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HappyAnyway, was reading about Dr. Schultze's Formula #1 that you recommended for constipation. I've tried just about everything, except this. Looks like it has habanero peppers as one of the ingredients and one negative review talked about it burned their throat,chest and stomach. I find myself very affected by spicy foods these days. Do you taste or feel the affects of the peppers?
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Is this to be expected?
I know you can get a drippy nose from the chemo... which I have, but I’ve also noticed blood dripping into the tissue. Should I be concerned or contact my doctor?
It’s not a full on bloody nose just blood colored nasal drip.
Thank you!!!
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PTCgal, it is never a bad idea to check with your doc. Could be absolutely nothing to worry about, but the pros will know that better than we will.
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