TRIPLE POSITIVE GROUP

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  • Taco1946
    Taco1946 Member Posts: 645
    edited February 2017

    Kae - especially glad to hear that about the ranges as my white count was down a little yesterday. Doc took no action, no neulastra for me yet either. Probably also depends on the chemo protocol. I'm just getting Taxol and perception (plus the front loading cocktail). Round three was yesterday. So far feeling good although obviously suffered the steroid insomnia. Not as bad last night as I took an ativan about 11:00. Did a little more proactively this week to prevent the constipation so hopefully tomorrow will be OK as I have my friend's memorial service. And I still have my hair. Fingers crossed!!

    I had partial breast radiation within ten days of my surgery - they want to be able to use the lump cavity but sounds as if most of you are getting whole breast. Obviously different complaints with each. I wonder if every place is doing partial breast yet. I had to drive much farther than I would have had to for full breast.

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  • kae_md99
    kae_md99 Member Posts: 621
    edited February 2017

    Taco, glad you are doing good. my BS did say that if the neoadjuvant chemo will work on me, he might do a lumpectomy but i would rather go for BMX at this point. waiting for genetic testing and if i have the gene, then its a no brainer. ...

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  • Juli24
    Juli24 Member Posts: 90
    edited February 2017

    Two days after my first TCHP infusion I started running a fever. It progressed rapidly with uncontrollable shakes, explosive diarrhea and confusion. This is called neutropenia. My WBC were at zero! Very scary for both me and my husband. He later told me he wasn't sure I was going to make it. Once admitted I was given the Neulasta shot along with multiple tests, magnesium, and who knows what else. I remained in the hospital a few days. After that I always got the Neulasta shot 24 hours after the infusion. My WBC counts still dropped significantly for the remaining 5 infusions but not to the point where I needed to be hospitalized. I did go in for fluids usually twice after infusions due to becoming dehydrated - they just automatically scheduled them knowing they would be needed. I was very careful about not being exposed to germs for at least a week post infusions. Couldn't afford to get sicker. As bad as this sounds, I would do it all again to win this battle. Keep telling yourself.......this too shall pass! Prayers of encouragement and gentle hugs to all!

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  • kae_md99
    kae_md99 Member Posts: 621
    edited February 2017

    Juli so glad you are over it. that was a bad drop.i am a cardiac nurse, with lots to learn in oncology and the lowest i have seen is 1!!! you went into septic shock my dear! yes fluids will help you a lot hence the pre chemo infusions. your lactic acid must have been over the roof. we shall overcome!

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  • shelabela
    shelabela Member Posts: 584
    edited February 2017

    Juli I am so sorry you had such a scare. Hope things are better today

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  • kae_md99
    kae_md99 Member Posts: 621
    edited February 2017

    do you know of a good sunblock for face? ty

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2017

    Blue Lizard, you can get it on Amazon. It is good for sensitive skin - a lot of people's have skin issues on cjemo

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  • Suburbs
    Suburbs Member Posts: 429
    edited February 2017

    Special K and Juli24, thanks for the information. I know what to watch out for. My next TCHP is this week. I can't believe it's already here. My only really bad day was yesterday as I felt like passing out on the way to get my hair completely cut off. I am not sure if it was dehydration as I had just finished on the tread mill or a panic attack of epic proportions. The shop wanted to send me home in a cab. I just said please do it and powered through. I went alone not wanting anyone to witness it. I know this sounds crazy but it felt like the worst day of my life. Yes, I sound like a drama queen. I woke up in a better frame of mind and put things in perspective. Now counting the days for when it when comes back. I counted my blessings too


    Kae, baby sunscreen spf 50 by neutrogena is what I am using.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2017

    suburbs - much like the anticipation of starting chemo seemed unbearable, and then wasnt as bad as I thought it would be - I was the same with hair loss. Once it was gone (mine hung on for 24 days!) it was easier than waiting for it to fall out. I made a mental shift from waiting to lose it to waiting for it to return. And you aren't not a drama queen, this is not for sissies!!

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  • Juli24
    Juli24 Member Posts: 90
    edited February 2017

    Good luck this week Suburbs. We will be thinking about you. Yes kae md99, it was bad but I made it through it & am doing well now. I wish I would have been on this site more back then since I had a lot to learn. Knowledge is power!! This site is also so full of hope which we all need! Hugs to all

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  • kae_md99
    kae_md99 Member Posts: 621
    edited February 2017

    ty! will look on the sunblock

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  • momallthetime
    momallthetime Member Posts: 1,575
    edited February 2017

    Kae it's incredible what one has to go through with the Insurance. Glad that you are settled in the routine finally.

    Everyone, so maybe could enlighten me. Dani is taking Ixempra/Herceptin/Xeloda. The way ex Onco requested Perjeta they did not ok it. Fine. She is triple positive. Stage IV.

    2 weeks ago, no treatment because her blood counts were low. WBC 0.3 Anc 0.60 Unbelievable #s for her. She used to get Neupogen. She was sent home, Neupogen was not taking effect, could not move a day later, so when they told her to come to the office to get Neulasta, again Wbc 0.25 Anc 0.06 HGB 7.5 - They gave Neulasta ( then called that Insurance was not approving it!!) but they will discuss it another time. I did not know her #s were that low. I had not gone with her that day. Next day Friday, she went to the ER, pretty much collapsed, short of Breath, Heart Rate 146, but by the time their bt's came back the Neulasta kicked in, and her HGB was going on 8 so they sent her home.

    Last week, Onco gave her Herceptin, at a lower dosage because they were gonna give it more often at a lower pace. No other treatment. But at the same time, she needed urgent Rads to her upper spine, due to nerve infringement.

    Question: I heard down the grapevine that doc is thinking in changing her treatment. Is Herceptin the one causing such low numbers? Xeloda? Ixempra? What do you think? TIA

    How much Claritin do you take? She usually never gets Neulasta. When Neulasta is given then she can't get treatment for 2 weeks? I thought I understood the nurse saying something like that. But that won't work for her.


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  • kae_md99
    kae_md99 Member Posts: 621
    edited February 2017

    claritin otc,take 1 tab the day before shot and then for 5 more days following the neulasta. that is what i know from my chemo class. i read somewhere here that taking it 2 days prior is also ok.im sure someone will chime in with regards to the others questions.. goodluck!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2017

    momallthetime - I would suspect that the Ixempra and Xeloda are the more likely culprits in depressed blood counts since they are actually chemotherapeutic agents. RBC, and thus hemoglobin, WBC, and platelets would all be affected. Herceptin can keep already lowered counts in a depressed range, but usually in and of itself doesn't cause them because it is targeted therapy but not chemo. Is her MO considering weekly Herceptin to keep the dose lower hoping to have less physical impact while still controlling the Her2+? The Claritin is regular, not D, and taken in a 10mg dosage every 24 hours, but I have seen oncs say you can double the dosage. Probably the biggest problem is that you need to take it in advance and if they make a same day decision on Neulasta she would not have had time to dose up. Also, if they gave her Neulasta and then insurance elected not to cover, Amgen used to have a program to replace the used single dose at centers - her onc's office will know about that. They also currently have a program to assist with costs of Neulasta if insurance approved - such as co-pay, co-insurance, or deductible costs if they are prohibitive for the patient.

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  • momallthetime
    momallthetime Member Posts: 1,575
    edited February 2017

    Kae md you are so new at this, and look at you so intuned in what's going on. Thank you for the info.

    Special K you are always such a fountain of knowledge. Thanks a lot. It's very helpful . Yes,there was not much time, they called in the afternoon to come the next morning, so she could have taken the Claritin. They did not give any indication this would be helpful. Now I will know. Ar this point there is much going on with the Rads, and RO speaking with Onco. It's a mess. I don't think exactly the next step. She was supposed to start tx tom, but it's being pushed it seems.

    I wish they would more upfront as what their thought process is. With today being a Holiday, it's hard to get info. Waiting Onco's email.
    She did take a lower dose last week, bcs they skipped the week before due to low #s, and she was supposed to get it tom, so she would be on 2 wk treatment. What can I tell you.

    They have to decide about the Rads, because it's close to the place that was done before on the spine. Thank you so much.


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  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2017

    momallthetime - as always, wishing you the best in a difficult situation. Hoping a plan can come together that will bring the most effective result. Sending positive thoughts and a hug for both of you.

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  • Suburbs
    Suburbs Member Posts: 429
    edited February 2017

    momallthetime, my heart goes out to you. I am too new to this too offer anything other than support. I wish you and your daughter all the best.

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  • momallthetime
    momallthetime Member Posts: 1,575
    edited February 2017

    Thanks y'all. You guys are the best.

    So she did get Herceptin, the rest in on hold till after Rads. They called late last nt and okd Rads to start today. I had sent them an email, and kinda begged hey, we gotta know what to do, don't wanna hold back tx, so I think they worked harder and got it done. I hope. And she will hopefully get on the chemo schedule next week again! 14 days off due to the off the chart #s, and then due to Rads. Yep. Who remembers normal?

    Take good care,

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  • Suburbs
    Suburbs Member Posts: 429
    edited February 2017

    opinions please... I learned today that my surgeon is on a 3 month medical leave. Having started in December with one surgeon, I was planning for another appt to discuss surgical options. MX or BMX. I was very disappointed as the news came to me from left field. Difficult to choose a plastics surgeon as these doctors work in concert as a team. Everyone says move on and find a new one. There are pros and cons. Has anyone dealt with this kind of a situation?

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  • Tunegrrl
    Tunegrrl Member Posts: 196
    edited February 2017

    Congrats, KB870!!! Herceptin alone after chemo is SO easy, it is almost like a spa treatment by comparison to the full shebang. I sit there and gloat every time, triumphant for having already finished chemo. Enjoy!

    I cancelled xmas at my house entirely. Made a deal with my son that included a weekend getaway (pending) and a new iPad. I just couldn't handle the prep this year with everything else going on. He had xmas at his dad's.

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  • Tunegrrl
    Tunegrrl Member Posts: 196
    edited February 2017

    Suburbs, i had a booking error put me in a similar situation, except my solution isn't going to work for you. I was pleasantly persistent and eventually my first (best-boob-man-in-town) PS found a way to fit me in. I was going to have been passed off to some noob.

    How about finding out who the *best* PSs are in your community and going from there? If it is an upgrade, i bet you would feel so disappointed.

    I was quite upset when they changed the plan on me after i had already become comfortable with my first PS. So glad i got to keep him in the end. Once he trims my other side to match, i'm going to tell people i have Boobs by Nodwell.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2017

    suburbs - is it the PS or BS who is unavailable? If I were in your shoes I would ask whichever one of them is not on leave to make a recommendation for a replacement doc. In my experience BS work with their preferred PS, and vice versa. To me the best reference will come from the docs who have seen the other surgeon's work. You definitely want a combo that works well together

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  • Taco1946
    Taco1946 Member Posts: 645
    edited February 2017

    Yea! One down! I had my braci before chemo. Still have 9 infusions of Taxol before just herceptin. I am counting on that being easy after this.


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  • Suburbs
    Suburbs Member Posts: 429
    edited February 2017

    Tunegrrl and Special K, good perspectives. I shall mull this over. Thank yo

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  • kae_md99
    kae_md99 Member Posts: 621
    edited February 2017

    ladies, do you recommend a particular brand of soft bristled toothbrush? ty

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  • shelabela
    shelabela Member Posts: 584
    edited February 2017

    Kae,

    My gums & Teeth were sensitive before chemo, I am now using a darn baby toothbrush!😏

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  • kae_md99
    kae_md99 Member Posts: 621
    edited February 2017

    good idea shela! how about a feminine wash ( sorry,TMI) ladies? can you recommend one?

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  • shelabela
    shelabela Member Posts: 584
    edited February 2017

    I use baby sensitive soap. Works good. My regular Dr. Recommended those things. Makes sense if it's good enough and gentle enough for a newborn.....

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  • Elizabeth7
    Elizabeth7 Member Posts: 25
    edited February 2017

    Kae - I got a corsodyl toothbrush. It's very gentle on my gums. My mouth broke out in mouth ulcers and cold sores on the roof of my mouth from the stress of diagnosis - the chemo hasn't even started yet! I found swirling manuka honey (100 MGO) around my mouth helped cure some of the sores.

    Any advice with this one - I'm starting Taxol number 1 on Monday 27th and I got my port a cath put in on Monday this week. It's been awful - possibly because I thought it was going to be a doddle. I have chest pain like really bad indigestion - I think I can feel the line going down behind my breast bone. How long will this last - if I knew it would only last a week or so I could put up with it.

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  • Suburbs
    Suburbs Member Posts: 429
    edited February 2017

    Elizabeth7, it lasts a couple of days. Sleeping was difficult. So worth it though for infusions and blood draws. Hopefully, it will be in your rear view mirror soon. All the best

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