Starting Chemo May 2019
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Neeli, I hope you are feeling better today.
Hey jrominger! Check out the PAN Foundation. That's the one that I'm enrolled in. I think that's the same one that palmetto mentioned. My eyes are less disgusting. 😁 I think my nurse navigator was right about my yucky eyes being a SE of Cytoxan. I hope Nat recovers from her last AC soon.
Palmetto, I'm thinking of you today. Good luck with Taxol. I think you'll be happy with the transition.
Welcome deanders.
Thinking about each of you, even if I didn't address you personally. Hugs to you all.
Oh yeah. Remember the song Lean on Me? I heard it yesterday and thought of my BCO buddies, all of you!
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UpstateNYer, HappyAnyway - Pelvic ultrasound and biopsy came normal so not to worry about uterine cancer. But i am still bleeding.
Anyone here have ever taken this drug called provera? I was on provera for a long time the last time i had unexplained bleeding. Now after diagnosed with breast cancer i came across lot of articles mentioning provera might cause high chances of breast cancer. This time also i have been prescribed provera if the bleeding doesn't stop anytime sooner. I just went through the warning on the provera medication and it does say it is high chance for breast cancer and regular breast exams are recommended. I had no clue about this when i was on this drug the last time. What an irony now i know this but still have to take it.
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Neeli, I don't take Provera. I do understand your concern. I take irbesartan for bp. There have been several recalls for irbesartan as it can cause cancer. My MO was very diligent looking at the manufacturer and lot number of mine. It's scary to think that our bc could be a se from another medication.
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Hi all,
I had my 3rd tc chemo on July 3rd. The first two treatments went ok. I did not have the Neulasta after those. After my 3rd treatment I did get a Neulasta shot. Experienced horrible headache and bone pain, then a week later broke out in hives all over. Spent the night in the hospital and came home today, but still breaking out all over. Scared my final tc won't happen on the 25th. Has anyone else this side effect?
Wishing you all strength and a positive outcome!
(I took Claritin before and after the shot for a week. Actually, I'm still taking it. I'm also on a prednisone pack, benedryl, atarax,and two topical lotions. Still breaking out in hives-head, arms, trunk, thighs, rear, hands, feet-everywhere. I'm miserable. Should I try soaking in something? I'm about ready to drink a bottle of tequila to get some relief
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Thank you for all the well wishes and encouragement. First Taxol is in the books! It was a much shorter time in the chair, which I appreciated. I was given an oral dose of Pepcid and short-term nausea and Benadryl IVs. Then was the hour-long taxol drip. I had on my natracure socks on my hands and feet. They were COLD... but I think the Benadryl knocked me out, so I fell asleep and didn’t notice it after awhile.
My family went out to dinner afterward and I had a good appetite, which was a change from when I was on AC. But I got home, did a couple of chores and the laid down on the couch and was asleep by 7:30. Lol It is now almost midnight, and I woke up about an hour ago, but I’m ready to head to bed again. No noticeable SE so far, PTL!
You are all in my prayers. Keep slaying, warriors
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Hey Bumming19. Try taking Claritin if you aren't already. I take generic Claritin. I experienced very little pain with Neulasta. Someone else on this thread had a rash recently.
Aright palmetto! The only thing I can possibly complain about Taxol is the steroid that I have to take the night before. The benadryl knocks me out, too. I tell my daughter to wake me up if I start drooling, snoring or talking in my sleep!
It's so quiet around here. I'm a little concerned. I hope everyone feels well.
I'm feeling stronger every day.
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Hey bumming19 Nat has a lot of weird neck, skull and rib bone pain from the neulasta. She says it’s like she has done a tough work out. It is always on day 4 and 5 after AC. Not unbearable at all. She does take the Claritin. In fact we hope she just took her last claritin as she is done with AC!! Hopefully no need for any neulasta when we start Taxol in 8 days
Happyanyway so glad to here you are feeling better every day!!!! Usually day 5 and 6 are a little tough on Nat but with the 20% reduction of AC it doesn’t seem as bad! Hoping the tumor keeps shrinking!!
Palmetto thank you for the update!! So good to hear as we are right behind you. Please keep us posted.
Praying for everyone here. Keep up the good work. cPR for everyone!!!
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I'm still here and I'm fine, HappyAnyway. I read all the posts but am opting out of much commenting for now.
I finished AC a week ago (on 7/5) and only have rads left. I'm still pretty wimpy but that seems to be getting better, now that I'm a few days out. Once my RBC gets back in line, I think life will be grand! Today Jim and I were at Target and passed the sporting goods aisles. I tried curling an 8 lb dumbbell and it was certainly doable but felt rather heavy. Up until my surgery in April I was curling 15 lb dumbbells in my workouts, so obviously I have rebuilding to do.
I'm delaying my radiation treatments until mid-August so we can go to OK to visit our son's family before that starts. Between now and then I hope to get a lot stronger and improve my stamina.
Hope everyone's doing well and having a rewarding weekend.
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Good to hear from you MtnMia. Glad you are improving. I bet you will be curling 15 lbs in no time. Enjoy your family in OK!!
So far so good on SE. Kind of weird that Nat’s wbc count was at 7.6 at AC #4! Must have been the 20% reduction. If it stays up (which is hard to know) we will definitely get out more.
Have a great weekend everyone
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I am 7 months post final chemo and 3 mos post final rads.. and still feel like I need a huge amount of sleep. My wind/stamina are back. My strength is back. I can do a normal workout again and feel as strong as before. But dang, I need so much sleep! Trying to give into that...
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Jrominger, please tell Nat that I said hello. Taxol isn't too far off. Hopefully the worst SE are behind her.
Hi MountainMia. Dang, 15 pound curls! You'll recuperate from AC in no time.
🏋️
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Hi All,
Noticed a bruise on my leg today. It doesn't hurt purple bluish in color about size of a penny. Is this chemo SE or due to low platelets?
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Sorry, neeli, I can't guess. I bruise all the time, all my life. New bruises show up and ?? I often don't know where they came from, and they almost never hurt. Whenever you are concerned, it's fair game to ask your healthcare team.
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I would say one SE I haven't seen mentioned, and which is a real bother to me, is the skin on my feet is very tender. I've torn holes and blisters in my right foot several times. Of course each time makes it hard to get any real walking in for several days after, even with taping a lot. I hope in another week or so, that will be done.
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Good afternoon (or rather good morning) friends!
A warm welcome to newcomers and a heartfelt 'Great to hear from you again to 'old timers'.
I sincerely hope that everyone is doing well.
MountainMia, I so understand the frustration of finding out that you have to start 'low and slow' - I am there too. Right now, 5-6 pounds is a real achievement for me! And don't get me started on my hiking speed and stamina - pathetic is the only word that comes to mind. I keep on pushing though. Today we did a 2,5 hour hike, with some 350 m elevation gain and I still have some energy left
I am sure that you will bounce off and regain your strength very soon! Re: skin on your feet - I did have a bit of the same on EC but it healed since then. I did have to use rich foot creams at least once a day to keep skin moisturized.Jrominger - best wishes to Nat, her WBC count is great, what a relief!
HappyAnyway - glad that your eyes are improving! Saw on Taxol board that you are still waiting for your insurance to approve carboplatin, hope they move fast. Perhaps your MO can call them directly and apply some pressure. I know these .things happen but I always get very annoyed and angry when an insurance tries to weigh in on docs decisions. I mean, profit is not everything in this life.
Palmetto - congratulations on checking off the first taxol, hope the SEs are mild and not bothersome.
I have had a busy weekend so far - yesterday my son and daughter in law came to our place for dinner. I have not seen them for a month - their travels, my WBC - so we had a lot of catching up to do. It was a lovely evening!
Today - the hike, and now we are getting ready to watch Wimbledon final on TV - hubby and I are rooting for Roger Federer, of course
Sending best wishes and good vibes from across the pond!
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Palmetto- congrats on completing your first Taxol. Hope that se's are kept at bay for you. Unfortunately, fatigue goes with the chemo deal. Ugh- I am working through that now 4 days past C/T.
Jrom-Congrats to Nat on completing last AC. Hope those counts stay in the normal range and of course minimal se's. Now on to Taxol. Hope it is easier for her.
Mountainmia-congrats on finishing A/C. Hope your foot gets better. You will be gaining strength soon with those weights! I completed C/T on July 10th. I still face small surgery to remove DCIS and then on to rads, I think. My MO said that I may not need rads, but must consult with RO anyway. I had intraoperative radiation at time of first lumpectomy.
Happyanyway- Hope you are feeling well today:)
Lacombattant-thanks for the update. Glad you are able to keep up with the hiking. Wow, I am lucky to get in a 1-2 mile walk. But, I always feel good afterward. Sometimes you just have to push yourself
Hope everyone has a great rest of your weekend. Hugs and prayers always.
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Hi everyone
Happyanyway I did tell Nat hello. It made her smile.
UpstateNYer thank you for thoughts and prayers
Lacombattante keep up your fitness. Love it. And thanks for thinking of Nat
MtnMia praying that your foot heals!!
Santabarbarian thank you for your continued updates So extremely happy for your cPR!!
Day 5 and 6 after AC is always the toughest day for Nat. She says it’s a weird upper GI feeling. Kinda of like acid reflux but not. It always makes us nervous because of that dang diverticulitis episode. The augmentin she is on is giving her diarrhea which we’ve had just the opposite trouble. I’m sure she is thrilled that telling you all🤤 She will be done with the antibiotics on Tuesday. Hopefully for a long time.
I’m praying for this whole group multiple times a day!! Hang tough everyone.
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jrominger: I had similar GI symptoms after my last EC, exactly on the day 5-6 and my MO put me on Pantoprazole. So far, I have had no GI issues with Taxol, i pray that once Nat recovers from AC, she will not have to deal with this SE ever again.
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MountainMia, hopefully your feet will recover soon. I'm glad that you will be able to visit your son and his family before rads.
LaCombattante, thank you for acknowledging my frustration with my insurance company and carbo. I'm glad that you were able to spend time with your son and daughter in law.
Hi UpstateNYer! I had a great weekend. Before all of this, I would have considered my weekend to be average. What I used to consider average now fills me with gratitude. How are you feeling?
Jrominger, hopefully Nat will feel better soon. It sounds like she has a positive mind set. I hope Taxol proves to be easier on her.
You are all an inspiration to me. I need to get more exercise. Now that my labs are better, I need to make it a priority.
Blessings to all.
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Happyanyway any news on insurance?? I met a young woman here in town who just hit her 5 yr mark post treatment. Her son was 2 when she got TNBC. She got the all clear!!! So awesome. She said TNBC and BC in general is just a bump in the road and then onward. I like her attitude. That will be all of you including Natalie in the near future!! Oh She lost her eyebrows and eyelashes along the way with Taxol and she said they came back quickly!! Didn’t ice and didn’t get neuropathy but did have fingernail issues but that also cured itself post treatment. She thinks things have come a long way since 2014!!
Lacombattante thank you for the GI info. Hoping that with her final antibiotics tomorrow that nonsense will go away!
Mtnmia how is the foot today
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Taxol #2 bagged!
My ‘spa’ day is changed to Tuesday’s from now on: I am back to work now and Monday is usually very heavy with meetings that require my presence. Better for my MO too, as her Tuesday schedule seems to be a bit less busy, so it was a win-win.
The SEs very minimal so far: since the steroid dose is halved, I am sleepy and drowsy from antihistamines. Nap is definitely needed!
And believe it or not, my blood counts actually improved. WBC are above minimum and RBC and Hb also slightly improved. This high protein diet does work, I just don’t want to think about my cholesterol levels
My MO said that as the treatment progresses I might need neupogen shots again, but not now.
Hope that everyone is doing will with no or minimal SEs!
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Jrominger, thanks for sharing about the lady that's 5 years out. It's nice to hear. I contacted my case manager. She said their doctor is still reviewing carbo. I also called my MO office. They are on top of it. I'm praying that it's approved. I don't understand why they're waiting until days before treatment to work on this. My MO mentioned adding carbo on June 14th.
Yay LaCombattante, two down! I'm glad that your blood counts are returning to normal. You need to have another football match with your husband once you have fully recovered. Let's see who ends up needing bandages then!
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lacombattante, thank you for your update!! As we start Taxol this coming Monday your information is very helpful!!! I was very pleased to hear about your blood count as this has been an issue for Nat. When they reduced Nat’s AC by 20% on her last 2, her WBC’s went up to 7600!! These are supposedly her low blood days but if we knew for sure they were up we would very much like to hang out with some family but don’t want to risk it. Maybe tomorrow!!!
Happyanyway please keep us posted on the dang insurance!! Nothing like down to the wire. I do love all the fantastic survivor stories that are out there!! So many
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If your cancer is basal or basal-like carboplatin is indicated. Push for it!! I is not as bad as many chemos. I have a friend who took it alone for NSC Lung Cancer, and did not even lose her hair. I took it w taxotere so I have a hard time knowing which caused what symptoms...
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Thank you, santabarbarian!
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HappyAnyway, I hope that the issue with insurance will be resolved ASAP and in your favor, of course!
Honestly, this insurance business makes me quite mad. During my appointment with MO today, she was filling in six page questionnaire sent to her by my insurance company, who now seem to be poking into every aspect of my treatment. Not that they challenge the decisions made, it is just a stupid formality to go through, but I wish that doctors spent their time treating patients rather than filling in stupid papers.
Yet, without the paperwork the insurance will halt the payments. So it had to be dealt with. Now, think about all highly qualified medical professionals spending their time filling in useless papers and then... billing back the time spent to the patient/insurance. No wonder insurance costs in my country are skyrocketing, with many not being able to pay their premiums and relying on government help.
Insurance behavior in your case - in my humble opinion and for a lack of a better word - is almost criminal. Adding carbo to your treatment plan will significantly up your chances to never deal with the beast again. This was shown in research, your MO prescribed it and he informed them long time ago. If they have had questions, why on earth did they sit on them until the last week? You have more than enough to deal with now, without adding all this insurance cr*p.
I know profit rules, but when / where does it stop?
Ok, end of rant for today
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Yes LaCombattante, I agree with everything that you said. I have a stack of medical bills that I have to tackle tomorrow. I will have to negotiate minimum monthly payments. Some billing agents are aggressive. Oh well. They can't get what I don't have.
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If possible, find a nonprofit hospital who will not hound you or add penalties to bills.
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well here I sit AC #2/4 ...mind you back in may I had 2 rounds of TCHP ... found new ONC and everything changed for the better (2 TCHP, 4AC, 2 THP(texatore) 12 HP)..
But I had a great 15 Minutes of fame at theNY Finger Lakes WineFest with my friends (in between my naps) ... "WineAvengers"
picture attached. We have Hot Mess, yellow, Hot Flash,red, Caption Chemo/Warrior Woman,pink, Offender, orange, Super King,red, I am sorry I do not respond to each and every one of you AWESOME WARRIORS, yes even Nat's Husband is Warrior
...it just me, I try not to get to personal with anyone during my BCB Adventure.. (breast cancer bitch)Anywho, INSURANCE BLAH... few things I have a read or have experience with ... each one of us has a Nurse Manager with our Insurance, you call him/her anytime and she will help you through any and all approvals and/or your bills.
maybe try 1 bill a week, I only look at ONE a week and or make phone calls, low stress. Try not to look at the entire stack!!!
Each county has a United Way, have a family member call or you can call for gas cards to grants to help with bills some even do living expenses, utilities, mortgage payments etc ... There are many Organizations who do co pays grants and or medical bill grants out there, mostly depending on your state and your county.
Also, you can see if you qualify for 2nd insurance for Medicaid ... I didn't think I would be eligible as I still receive 75% of my pay being on comp, previous neck/back issues, and I have Medicaid as my 2nd insurance. Also, NO MEDICAL facility/agency/organization is allowed to "Balance Bill", meaning never pay a bill until after insurance, even if they are out of network, etc etc...
Also, try to ALWAYS set up a payment plan, then at 6 payments left or so, STOP payments, wait for a notice then call and ask for "negotiated" final payment, I have seen this done a lot sometimes up to thousands taken off, but normally its 1/3 of what you owe (1/3 is usually the amount the facility gets paid when a bill is sent to collections)
You can always PM for more details, most information I have learned the hard way, and or I have Friends...
Well I have total lost my train of thoughts now, yippee Chemo fog strikes again ...
oh wait, I did have CT of abdominal and pelvic, NO microMETS, whoop whoop, and I am still fighting Insurance for CT for lungs and chest...
PS: anyone else take Melatonin, I seen a few articles and trials, I forgot to ask my Onc, but I did take 5mg last night and I was awake every 2 hours, go figure HAHA ...
Well look at all that, steroids sure let me babble on...
Have a bright sunshiny day
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Thanks for the tips!
Great news! I just received an email that the carboplatin has been approved!!!
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