TRIPLE POSITIVE GROUP
Comments
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FBN, I am so glad your MO and nurses were so kind and got you feeling much better. Hopefully the new plan will be much easier for you.
Linda, I'm glad the dose reduction helped some with your SE's, though having to go for Neupogen shots and all that bloodwork can't be a picnic either. You might want to ask if your MO could reduce your dose even further. I know there are some of on here who had to have more that one dose reduction along the way.
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FBN - happy you are feeling better!
Linda - Taxol and Herceptin are given together. Sorry you had an uptake in visits and anxiety this week.
Ladies....is it Abraxane, that is in the Taxol/Taxotere family, and has fewer reactions? I don't need it, but was thinking alternative for FBN.....
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thanks Robin - knew someone who knew would come and answer that. My Mo early on had mentioned Abraxane as a treatment possibility but said that my insurance would most likely not cover it unless I really could not tolerate taxol or taxotere - so maybe that would be a good option for FBN - don't know how that works in Canada. Apparently is very expensive as it is still fairly new? I mean my chemo is already billed at $14,000 a treatment lol - guess it can be worse?
btw Robin - looks like the hair is coming is great!!! Are you done with radiation??
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Hi All,
Friday's update -
Homecare called shortly after
9. A package of supplies will be delivered to my home prior to 1:30
today hopefully. Then a Nurse will come and hook me up to an IV for 4-6
hours so that I can get more fluids. She will return and un-hook me
tonight. This will continue for Saturday and Sunday at which point my
Port will be de-accessed and I can take a shower again!!!!! :-)Today
I feel about 80%. Still some lingering discomfort but nothing like it
was. I ate dinner last night - chicken and coleslaw! mmmmm
Coleslaw!!! I ate breakfast this morning - I want to eat! My tummy is
still not 100% and is still loose but I am feeling so much more like
myself albeit tired.It is so true - how do you know what is a
"normal" reaction until you have experienced it yourself? I have had
pain and discomfort my whole life in my hips and lower back. I just
kept plowing on. Yesterday, the Nurse explained that I must stay ahead
of the pain. I should take the meds. My problem was that I didn't even
try percocets until Monday morning at 3:30am. Up until that point I
thought that extra strength tylenol would be enough. I just hate the
thought of popping pills and have to get over that. In my worst dreams I
never thought that things would progress to the point that they did.I
never even thought that the burning tummy could be reflux. I have a
mild case of reflux that flares up every so often and pop a prevacid for
a week. Then I'm all good. When I chatted with hte nurse about the Dr
giving me zantac, she explained that the burning was reflux. I always
thing of reflux as acid backing up into the throat and forget that this
includes acid burning in the stomach as well. She suggested that I pop a
prevacid every day and that this well help prevent this from
happening. I never even thought to ask about this or discuss with my
Onc. All things that you learn.What I truly love about my
medical team is the kindness, empathy and support that I am getting.
Not once did anyone point fingers or make me feel like I had brought
this on myself. Even when I said that I was stupid to ignore this like I
had, they jumped in and disputed my way of thinking. We all know that
there are some very poor bed side manners out there so I am thankful.I
have complete trust and faith in all of them - especially my Oncologist
who leads the charge. His hug meant the world to me. I will discuss
the go-forward plan a week Tuesday. A nurse explained to me that
unfortunately, others have gone through what I did and explained why it
is so important to raise concerns early. I did contact my MO's nurse
Monday and she suggested an IV based on my feedback. I turned it down
thinking again that "tomorrow would be better".Plus I didn't
want to be a bother to anyone. I didn't want my hubby to have to take
time off of work. As it stands, he ended up coming home from work
Monday to be with me and took me to the Dr yesterday. I worried him
sick with my pain and crying so really did nothing good for anyone.Hindsight is always 20/20.
So, now I just feel tired. Still have some pain in my tummy but now I'm on the side of healing.
Two
more treatments!!! Can't wait for the football season to start because
then my chemo is behind me and I can focus on better things!It is amazing how this crap helps to restore your faith in humanity. People cut one another off while driving daily, don't hold the door for you, race you for a cashier at the supermarket, office politics, etc etc etc. My faith in humanity has been restored. The willingness of people that I have not heard from in years reaching out to me. Busy friends offering to help. A girl that I went to school with 35 years ago chatting with me a few nights ago for over an hour to keep my mind off of things - we didn't hat that much in 5 years of high school together! lol
And then there's all of you - my Angels. Your words of encouragement and support made me feel like we were all together - chatting, hugging - supporting...... I truly was ready to die. I went through a point where I just didn't care. When I broke down at the hospital yesterday my hubby started crying too. It killed me. I felt so weak - like I just couldn't fight or be strong anymore - but I also didn't want to hurt anyone. Seeing him cry just about killed me!!!
I hope one day that we can connect somewhere - it would be so nice for all of us to meet - what a laugh we would have!!!!
Love you all!!!!
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So happy you are feeling better FBN. It does seem we get better at handling the se's with each treatment. I went on prilosec after round 1. Totally eliminated the burn. If you have a good prescripton plan ask for a script instead of buying otc, saved me $. Sending good thoughts and positive energy your way!
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Linda - it is Adriamycin in the Adriamycin/cytoxan/taxol/Herceptin regimen that can't be given with Herceptin. They do the AC first and then the TH.
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Ahhh thanks SpecialK - knew there was something that couldn't be given with herceptin!! Had my bloodwork and didn't have to have the neuporgen shot today!! I celebrate small things now LOL
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Linda - yay for no Neupogen or co-pay!
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My understanding is Abraxane is packaged differently to prevent severe allergic reactions. I don't know that it is any less intense in regards to other typical side effects. My onc told me that it actually has more risk of causing neuropathy than Taxotere or Taxol.
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The small victories are the important ones. My small victory for today is I don't have thrush yet this round. Got something called xylimelts from my dentist. Its a disc that sticks to your gum and melts over night. Did't wake up to sandpaper mouth today. I rinse with biotene during the day and suck on therabreath wetting lozenges after I eat and it takes away the bad mouth.taste
Xylitol is the important ingredient in all three products. In addition to relieving dry mouth, I found research that suggests it also corrects the ph balance in the mouth, discoursging the growth of thrush
Warning for dog owners, xylitol is.toxic to.dogs.
Hope your new treatment plan goes well.for you Linda!
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Linda, I finished rads yesterday.
Good memory!!0 -
Let's face it,the journey through Cancerland is hell and the stop on the way to Chemo Lane is triple hell. So many of you have written such vivid descriptions of your suffering and some suffer much worse than others. I don't think there are adequate words to describe the toll that the treatments to fight cancer take on us. Other than the physical suffering is the mental anguish. I know I shed enough tears to fill a bucket but thankfully had my DH to enfold me with his loving arms until I could pull myself together. How does anyone get through this torture alone?
FBN, so happy to know that you are doing better.
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dance - taxol is delivered in a solvent, abraxane in albumin, so a more natural system, but the drug is the same.
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thank you honeybair. I don't know how I would have got through this with all of you and especially my hubby of 30 years! He's an angel and I love him more now than ever!!!
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Football reflux kicked in for me a few days after my first chemo. By the time chemo ended I was on 2 meds for it. (BTW Prilosuc never works for me). I never got the Big D though. Just the big C
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Lago what did you end up taking for your reflux? I have been using prilosec and I don't see that it is helping me either, I also tried pepcid.
Woo hoo Robin!! Congrats!!
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3 years before I took Nexium prior to diagnosis but I was on Protonix and then added Carafate Solution. I took Carafate solution years ago and it works great but price.
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FBN, I hear you about the pills.
Pbrain Before Chemo:
1 beta blocker (blood pressure)
1 Crestor (cholesterol)
1 Paxil (anxiety)
1 Diovan (blood pressure)
3 Fish Oil (heart disease runs in my family)
1 Melatonin (too busy watching Netflix to go to bed had to stop!)
Pbrain During and for a Long Time After Chemo:
1 beta blocker
1 Crestor
1 Diovan
1 Paxil
3 Fish Oil
1 Melatonin
2 Potassium then, when that didn't work, 3 doses of liquid potassium
2 Prilosec (Reflux, constantly!)
4 Immodium (I won't go there, but I was wearing diapers to work)
8 Metamucil tablets (to help with needing the diapers)
2 Promethazine (nausea)
1/2 Hydrochlorothyozide (for swollen legs and hands)
1 Zofran (nausea)
2 Lomotil (the pooping was so bad, I had to go prescription)
Plus topical steroids for hemmorhoids, clindamycin for zits after Arimidex treatment started, and about 700 tubes of Preparation H.
I learned though, just take the crap. It will eventually end. Besides the addition of Arimidex, I'm back to my old routine today. Don't even need immodium much anymore thanks to Kathec's suggestion of using Florastore!
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And to your post Honeybair, I was talking to a very good friend yesterday at work. He was diagnosed with Chronic Myelogenous Leukemia about 5 years ago. He had watched his wife go through breast cancer treatment about 3 years before that and she had been so sick and so weakened. He was petrified of what was ahead for him
But he told me he realized they have a silver bullet treatment for CML, not this system-wide chemo crap. He takes a pill everyday and that is his "chemo". He is currently considered cured because there is no evidence of the CML in his bone marrow or his blood. He told me he feels guilt that all he had to do was take a pill with no side effects and then get a bone marrow biopsy two times (which is no picnic). He watched his wife suffer so much over stage 1 BC and he had advanced leukemia and cured it with no symptoms.
I told him no guilt was needed. Someday that is how most cancer treatments will be. I think we are getting there with Her 2+ BC. Wouldn't it be great if you had a recurrence and all you needed was a year of Herceptin? ;-) No beating up on our hair, bowels, liver, nails, skin and just about everything else?
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My pharmacist highly recommended liquid carafete for the acid burn. My NP gave me a script which I filled but never took because my MO wanted me to try the prilosec first, which is working for me. Coincidently, my dog got really sick & vet ordered carafete as one of her many drugs. Hey I already have a bottle of that! Worked great for the dog, but she finished the bottle and needed more. Its expensive from the vet. Wish the dog could go on my health insurance, so far her illness has cost me WAY more than mine. Anyway, if prilosec or pepcid don't work, try carafete.
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Hi All, I'm one of the ladies in the midst of treatment. My 4th round of Taxotere, Carboplatin and Herceptin was 2 weeks ago. I usually bounce back after the first week, but last week I was still suffering with all kinds of SEs. I had to go in for fluids a second time. One of the worst SEs was extreme achiness in my knees and shinns and major weakness in my legs. Can only stand for short periods of time. Get tired out really quickly. My MO nurse told me the treatments are cumulative and the further you go in treatment, the more it builds up in your system making it harder to bounce back. She said "you'll get to the finish line, but you might be crawling over it." Luckily my boss is great and let me work from home a couple of days this week. One thing I've been experiencing is leaky eyes. Not crying, just lots of tears. Has anyone else experienced this?
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efcjax those are called Taxotears. I also had eye twitching. Both are annoying. Try using eye drops/artificial tears (NOT the kind that gets the red out). The tears are from dry eye. If can also be from a blocked duct. Be sure to let your onc now about this. The stiffness at by the end sucks. Walking up stairs was challenging for me and I was in amazing shape before treatment. Lets just say I wasn't doing any lunges. But about 5 weeks PFC the stiffness started to get better.
It's hard to believe but your body recovers from the stiffness, flickering. The tearing got better but then I went on Anastrozole and my eyes got dry again. Not as bad as on chemo so I continued to use drops. Now that I'm on generic Exemestane my eyes are less dry.
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efc - what does your hemoglobin look like on your CBC? A low hemoglobin (normally happens on chemo) can contribute to some leg pain and muscle weakness. I also had the spontaneous tearing and use a lubricating eye drop, but it is important to let your onc know about the tearing so that you can be checked by the eye doc if your onc feels it necessary. Some have had to have stents in the tear ducts due to scarring - this is something to address now rather than later.. Speed of your Herceptin infusion can also contribute to some hip/leg aching, but doesn't happen to everyone - mine was run over 90 minutes and this seemed to help. I continued at that rate when I moved to Herceptin only infusions, I was particularly sensitive to hip/leg pain with a more rapid infusion. All of this will improve after you are done, but don't be surprised if it takes a minimum of about 6-8 weeks.
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efcjax, You are just a few days ahead of me. #3 started to kick my butt and #4 came in to finish the job. I don't really have the achiness in my legs but yes on the weakness. I do have dull achiness in my mid back almost all the time but the exhaustion is the killer. I really can't walk around more than 5 or 10 minutes at a time without being very tired. I have to build myself up in the morning to take a shower lol. My RBC are low - but not that low - hanging out around 3.6 and Hgb around 10 this week but I am just dang tired all the time. MO said if my HGB gets to 8 they will do a transfusion but he doubts it will do that. Fluids do seem to help me with some of the SE's but not the exhaustion. I have the taxotears on and off through the 21 day cycle. My MO doesn't seem to be concerned about it though - specialk - what would be a sign that the eyes were having issues, if you know?
Oh lago - the flickering is everywhere in my body not just my eyes. I twitch in my stomach, my bowels, all my muscles. Sometimes it feels like I have an electric current running through my body lol. The thing I don't get is why through the cycle do I have good days and bad days. I mean it is spordiac. Like I might be good on day 8 through 10 and then all of a sudden I have se's again on days 11- 14? Seems like they should just reduce over time instead of sneaking up on me just when I thought it was safe to go in the water.
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Linda every one responds a little differently. Your onc might be able to answer that. I can give you some good bullshit answer though. Maybe its because your body fights hard making you feel better, then it gets tired again and needs a break from the fight… or you're just special ♥
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Thanks Ladies, I had no idea the tearing was something to bring up to the MO. My hemoglobin is low at 9.8. Platelets were very low at 126, I'm told that's from the carboplatin. I usually do tell them to run the Herceptin slower, but it took them an hour just to get to me for labs yesterday and I needed to get back to work so they ran it for 30 minutes. Knew down deep I probably shouldn't. Two weeks ago they gave me a double dose of Herceptin because the following Friday was a holiday. Linda, I get the twitches all over too.
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Pbrain, there is hope that some day all of the money raised to combat breast cancer will enable women to be treated other than by slash, poison, burn and that there will be a pill that we can take to stave off recurrence as well.
Like you, after BC, my drug intake has changed and several more have been added. I sarcastically call it Cancer: the gift that keeps on giving.
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efc and linda - the tearing is a normal and common SE, most of us had it so don't be alarmed, but let your onc know about it. I am not sure of the criteria that determines when to see an ophthalmologist, but I know a few who post here had stents so maybe they will chime in. I had mad tearing but it went away when I finished chemo - but not for about 8 weeks. Dropping Hgb is also normal as chemo impacts fast growing cells, including blood cells,, and they usually don't transfuse until 8 or lower unless you are symptomatic (dizziness, lethargy, confusion, shortness of breath). Your hemoglobin number is the one they will base a transfusion on, not your RBC. The specific blood cell numbers they will watch on a CBC, in addition to your hemoglobin, are WBC/ANC, to determine whether you need Neulasta/Neupogen, or are subject to an opportunistic infection, and platelets, as they are the clotting factor in your blood - because chemotherapeutic agents can cause tissue irritation and bleeding (nosebleeds and hemorrhoids/fissures particularly) they will not treat you if they are too low as there can be uncontrollable bleeding. I experienced a stairstep effect to my Hgb, it would drop, then recover, then drop the next time, but not recover quite as well. I got very close to needing a transfusion, but did not drop below about 8.5 and never was symptomatic.
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Thanks Special. I was just looking thru my labs and they have gone up and down throughout treatment. I've had a pretty good day today. Food actually tastes good, look out!
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I have to say that during the 12 weeks I was on taxol and maybe for 4 months later, I didn't need Restasis for my dry eye. I didn't tear that much, but I had much happier eyes than I do in real life. See, there's some good to chemo. I also had fabulous skin and cuticles! Tee hee.
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