Starting Chemo May 2019
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Last AC done! Yippee!
I mentioned before that my finger nails look bruised near the cuticles. My hands look a shade or two darker than my arms. They have both tingled and or felt numb (not at the same time) briefly over the past few days. My infusion nurse suggested icing hands during adriamycin. Great. Thanks for the info on my last treatment, nurse. Perhaps this information will be helpful to you.
Tinnitus is annoying. Otherwise, I feel pretty good today.
I hope all of you are feeling better.
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hi lacomb- my MO will try to talk me into keeping on chemo. My onco score was 48, which is high. But who knows if stray cells are lurking about. Crap shoot. Many on this forum were high onco, did not do chemo and are fine many years later. I will be seeking a naturopathic doctor too. If you Google 75% of doctors refuse chemo, there is a great article from last year that states 3 out of 4 doctors who chemo is Indicated for refuse chemo. Article is quite eye opening. Big $$ to pharma and kickbacks to physicians who order chemo for their patients. I do not wish to make enemies or scare anyone, but article seems very reputable. I am not stating that everyone not take it, as I do think it can be effective in shrinking tumors for neo adjuvant, but in my case, my tumor was already removed, small, and negative sln. I also believe in quality of life. Best wishes to all.
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HappyAnyway,
Congratulations on finishing AC! You did it!
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Thanks!
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HappyAnyway I am so pleased for you!! That's a big thing to mark off your list.
I had my 2nd AC today and it went fine. Met with MO. He does not recommend I continue with taxol once done with AC, which is fine by me! He's an interesting guy, something of a minimalist.
I didn't see all my blood test results yet but my WBC was plenty high, no issues with that. Yay Neulasta OnPro!
Need a nap...
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Wow MountainMia, you are halfway there! That's great! Please don't leave us once you're done.
Nap is on my agenda, too. I hear the rumble of nearby thunder. A gentle storm makes for a perfect nap.
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congrats on your final AC Happyanyway. Glad you got through it ok. Now on to taxol? When does that start?
Mountainmia. How many more treatments do you have to go?
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UpstateNYer, I believe Taxol will start in two weeks. I meet with MO in one week. I'll keep you posted. Thank you for the congrats. I'm glad that adriamycin is behind me (minus the upcoming SE).
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HappyAnyway,👏🏻👏🏻👏🏻Good for you, another box checked. I had my 2nd of 12 taxol today, then start AC. Hope your SE are minimal in the coming days
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UpstateNYer, I have 4 AC total, so 2 more scheduled. Then chemo is done for me. Have you checked to see if there is a different regimen to go to? I was scheduled for cytoxan and taxotere, too, and got switched to the adriamycin. Perhaps that is worth trying before stopping altogether. Again, my MO isn't planning for me to follow with taxol. My characteristics are similar to yours in some ways -- leftside DCIS and IDC, 1.5 cm, clean margins, 0/3 nodes, grade 3. I'm triple negative, so that is different from you. I think my doc wouldn't have argued if I said no to chemo altogether, because the tumor size and the nodes.
Katie, good to have another one marked off! YAY you!
HappyAnyway, I won't leave you.
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Katiekins, thanks! Any advice for Taxol other than cold therapy? I'm all ears.
Thank you, MountainMia.
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Happy, there is an ongoing (LONG) thread on weekly taxol
https://community.breastcancer.org/forum/69/topics/788735?page=1
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Thank you.
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You rock Happyanyway! Congratulations. So awesome. Nat is still in the hospital. WBC count at 40. Needs to be at 500 before they release her. She is feeling much better. CTCA is confident they will come back in time for AC #3 next Thursday. Thanks for the icing info on A. We did it on round 1 but not on #2. What is next for you?
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HappyAnyway, I did very good the first two days, at worse slightly queasy. Day 3 and 4 were not to good, completely exhausted, and I had lot of pain from my port which was put in the day before I began chemo. No appetite those days but I did get out for a walk each day with my husband. I was good the rest of the week, ventured out for a 2.5 mile walk by myself, ran errands etc. Also, I slept well each night. During this treatment I also had carboplatin and possibly Tecentriq. I’m in a trial.
Yesterday I only had the taxol. After a nap I felt better than I had in weeks, strangely so. Anyway sleep not so much. I’ve been up since 2:00AM but it’s fine quie and calm😊. I’ll let you know how the week goes, good luck🍀💪🏼
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Katiekins, I didn't get a great night of sleep either. I will blame it on the steroid pills. I took a benadryl about 12:30 and moved to the couch. Did better but still not great. That's okay, because I can nap today as needed.
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Thank you, jrominger! Praying for Nat and you. My goal is like hers, I want my treatments on schedule. I see my MO on the 14th and should begin Taxol on the 21st.
Katiekins, thanks so much for sharing your experiences with me! Maybe you can sneak in a nap today. The blinking of my Neulasta drove me nuts last night! First time it's bothered me.
I set an alarm for my Zofran. I will take it today and probably one tomorrow. I feel well this morning. A little sleepy.
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Hi MountainMia. A nap is on my agenda, too.
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Today my hair is coming out. What a mess. Glad I cut it short Tuesday, or it would really freak me out.
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Dang it! Big hugs.
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Have any of you asked your oncologists about the schedule of follow-up visits after you're "done" with treatment? I have 20 rads scheduled after chemo is done, so should be done by end of August. I asked MO on Friday about my follow-up and he said they trade off, starting with my BS. But mammograms will go back to an annual schedule and no other testing is planned. He encouraged me to just get on with living and not focus on it. As mentioned above, he seems to be rather a minimalist.
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Hi Ladies. Not a lot of sleep to be had over here tonight but I hope you’re all feeling well. I’m still not sure what’s going to happen with my treatment after my filgrastim reaction... it’s causing me a lot of anxiety, will they tell me we have to discontinue chemo altogether?!... anyway, I was looking for some hair advice.
I’m day 12 post AC #1 and I haven’t noticed much shedding but I have some free time tomorrow and I’m considering biting the bullet and shaving it. I don’t want to see it come out in clumps.
I guess because of the uncertainty of my treatment plan, and because it hasn’t started coming out yet I’m second guessing myself. It’s going to come out, right? Even if I only did one round of AC? Sorry I just need some advice and didn’t know where to turn..
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hi Britt!
I was taken off Neulasta after my 3rd chemo, because it is just too strong for me. My WBC goes through the roof. My oncologist told me that she will use a biosimilar instead (don't know yet which brand), she will decide after my blood test tomorrow afternoon. She never mentioned changing the chemo regime, just adjusting the 'support' med. As she said, using biosimilar allows for more precision:). Hopefully this is the path your MO will take too - when you have your visit, grill them with questions and options.
Re: hair. I did buzz my hair approx. 10 days after the first treatment, in anticipation and to take some control. My onco and the nurse practitioner told me that hair WILL fall out, just before the second treatment. Well, in my case, the real shedding started only after the second chemo. Luckily, I had very short stubble, because in my case losing hair in clumps would definitely be more nausea inducing than chemo itself. A week after the 3rd treatment and I still have some strugglers left, but I am getting closer and closer to 'shiny-bold'. I must say that I got used to the look and even like it - as long as i put some eye make up on. Nothing special, just to bring a bit of definition.... but I digress
My understanding is that hair will shed, but to be sure, can you check with your MO / nurse to help you make the decision? They should understand your dilemma.
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MountainMia:
I still have a long way to go treatment wise this time, so didn't ask how the follow up will look like for me.
But the first time around my follow up was similar to what you describe. Every 6 months visit with my breast surgeon, MO - every 6 months. Mammo and ultrasound - once a year.
Congratulations on being half way through chemo!
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Re followups:
My post treatment followup is every 90 days with MO and every 6 months with BS. No scans, was what surprised me. My MO explained that it's a matter of risk and benefit and at this juncture, the scans confer more risk to me than benefit. Statistically I have a 10% risk of recurrence; I believe they suggest routine scans if recurrence risk is 20%+. My job is to monitor things with my body.... aches and pains, health and skin issues.... and to report any new problem (pain, cough, soreness, etc) that does not resolve with 2 weeks. Otherwise, its blood work every 90 days.
Personally I am glad if the risk of scans is greater than my risk of recurrence!
I am lucky to be nearly one year into my 3 year window of peak recurrence risk, feeling pain free and energetic. So I have a good baseline to work from, and ought to notice any negative changes.
For people thinking about post treatment routines I want to mention there are a lot of nutritional supplements, medicines, and complimentary practices that, statistically, are related to much lower rates of recurrence and we can all practice those: diet less than 20% calories from fat, brisk exercise 3.5-6 hours per week (30+ mins per day), high D3 status. People who take metformin, melatonin, statins, low dose aspirin and a few other common drugs all have lower rates of recurrences.... these might be wise to discuss w MO. (Everyone has different cancer and different other medical issues so it's not exactly one size fits all.) Several OTC supplements (curcumin, Omega 3 wild caught fish oil, reishi mushrooms, EGCG (active ingredient in green tea), and a few others appear to be protective and supportive against recurrences. High dose Vitamin C (infusions) and hyperbaric Oxygen have activity against cancer stem cells (the stray cells that can turn into tumors). And I am still doing fasting mimicking quarterly, to boost my immune system.
As I am TNBC, there is no hormonal or HER2 followup, so I am being very careful to do the things I can do.
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So tired, everything is so loud. My hair is coming out and my scalp is tender. Feeling a bit blue, and know this is the first day I don't look like myself. The first of how many?
I have a few tasks to do today. One is to send a letter to my brother, who doesn't communicate by email. This is a portion of my note to him: "I'd love to feel like once this is over, I'll be "cured" of cancer. It is possible that is true, but the problem is, you can't tell who is cured until they die of something else. I will have a much lower probability of recurrence having done all the treatment than if I did not. Here is the basic stats for someone with my characteristics: after 5 years, there would be 82 (out of 100) survivors with surgery alone. Add in what's considered to be 3rd generation chemo and it improves to 5 extra survivors. Honestly, that doesn't sound that great, but I want to be one of the 5. The flip side is there would still be 10 breast cancer related deaths, with the other 3 deaths due to other causes. So, be one of 5 extra survivors, or be one of 5 extra deaths. Hmm. Given that, I don't mind a few weeks of not feeling great and a few months of having no hair."
I'm not sure if that all makes me feel better or worse. I suppose best to just move along and work on something else. We have 8 grandchildren, including the new baby James. I need to take a look at their college 529 accounts and see if anything needs to be changed. Pay credit card bill before I forget again... And maybe try to do something in my quilt studio. In a way that all seems like more than I could do, and in a way I think, I should be able to do the 2 financial things in the next few minutes! hm. It's still early. Maybe I am fretting too early.
Maybe I can paste on a smile and breathe deeply and change my attitude. Worth a try.
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hello Santabarbarian. May I ask you if you went to a naturopathic doctor and if so, how did you find him/her? Was it expensive and how often did you see them? I am interested in getting the vitamin C infusions. Thanks for all of the valuable info you share with us.
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How is everyone doing? Tomorrow I have round 3/6 TCHP and I am struggling mentally. I don't see MO until 6/26 and now I want to negotiate doing just 4 instead of 6. UGH
It's funny - my friend has her cards read by a psychic and she asked about me. The psychic pulled a card and among other things said I'm going to be okay but I'm not trusting in the process. I hope and pray she's right about the okay part but i know she's spot on about not trusting the process! The physical is one thing but the mental is a whole other for me. And I haven't even had half the episodes and challenges that you all have!
Upstate - I see a naturopathic doc - my regular dr strongly believes in a mix between Western & Eastern medicine so she referred me to her. The naturopathic doc I see uses Standard Process supplements. It looks like they have a list of distributors on their website - so you might look there. www.standardprocess.com - perhaps that would provide you with some direction to someone in your area. I can't take any supplments while on treatment - MO won't permit but naturopathic doc said to see her as soon as I'm done and she'll work on detoxing me. I'm seeing an accupuncturist right now to help with SE's.
So Britt - did you cut your hair? Mine starting going around day 14. I shaved and had a little stubble then it started shedding BIG time so buzzed completely. I bought a new wicker hat that I kind of like - between that and my baseball hats it's how I roll.
MountainMia - I'm with you - need to adjust my attitude also. Hang in there!
Keeping you all in my thoughts!
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Yes, I went to a Naturopathic doctor -- after a consult with an experienced integrative oncologist in Chicago, Dr Keith Block. I wanted to follow his plan but did not want to fly to Chicago 6 times in winter while on chemo!
I actually looked up "High dose Vitamin C IV" on Google for my community, then looked at yelp and reviews of the several places that provided them. One was more of a "Spa" feeling and one was a suite of Naturopathic MDs, one of whom has a sub interest in cancer & oncology support. So it seemed the better place to try.
The IVs are expensive. (I am lucky to have a dad with the $ to help me.) It is not covered. It's ~$275 per time, maybe my town is expensive; not sure. I have probably done 30 of them over the last 8 months. I could feel my breast aching after the high dose C - not all around my body, not the other breast, just where the tumor was. I think it's worth $7500 but it's terrible that so many people who can benefit cannot afford it. I got two per week during treatmen, and several other shots like D or other vitamins here and there. Then zero during rads, as I was out of town. Now I am doing 1/week as follow up.
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Hi Chemo Sisters... Question if anyone knows.. I will finish AC next week and I was wondering if we get a break before starting Taxol. Doing well with minimal side effects, thank goodness and cold capping so I still have most of my hair.. Hope everyone else is doing good.
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