TRIPLE POSITIVE GROUP
Comments
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i guess the one around the grafting is not really compression as a bra to form the new fat. If that makes sense
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HapB - I've doing your suggestion (taking b/p during hot flashes. It seems that my b/p drops, while my pulse accelerates. My last was 112/57 with a pulse of 87. This was at rest. Interesting.
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Hello ladies- I am slowly catching up to all the posts since my shoulder surgery Wednesday.
Coach- thanks for the update on your 2nd opinion. Sounds like you had a great experience. I’m happy you found peace of mind.
Tresjoli- awesome pictures! You look great! Thanks so much for posting your pictures, it’s comforting to know things really do get better
To all those who are new, welcome to our group. Sorry you have to be here but you will find lots of support, inspiration, and helpful information.
Hap - thanks for the great articles! I like your suggestion to check BP when having hot flashes. I get the same symptoms as some of the other ladies, I get super hot my heart races and I feel like I’m going to faint. Never thought to check my blood pressure I will definitely do that next time.
Shelabela- I wore the compression garments for 6 weeks. I think they helped with avoiding the fat necrosis.
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deni,
me too, i get really hot wit fast heartbeat and feel faint! i was given celexa to help with it plus for the anxiety too. i will see how t goes.its very scary when that happens.
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Hi ladies,
Cherry in Sweden: thanks for your message.
I have been a bit late to respond because midweek this week (and this was a week after my first Taxotere-Herceptin-Perjeta combo), I woke up with a fever, went to the dr to get white cell counts, and landed in the hospital. No idea what caused the fever in the first place (I have a sore throat but that is it); I have been receiving a ton of antibiotics. The IV antibiotics have not worked at all, with the fever going up, and the white cells going down, on my first two days in the hospital. Then they started me on Neupogen last night, and I am already feeling soooo much better. Hopefully I will be able to get out of here within the next couple of days.
Which takes me to Neulasta. The day after each of my 4 AC infusions, I had a Neulasta shot. Never had a problem with it, never had any infections or even a cold while on AC. Last week, when they started me on Taxotere-Herceptin-Perjeta, to my surprise (the MO didnt mention this to me) I didnt get the Neulasta shot, because, according to the nurse, the low white cell counts is not a common side effect of Taxotere. Well, one week later I am in the hospital and the only thing that seems to be having any effect is Neupogen, which is similar to Neulasta.
My MO is out of town, and other MOs have been visiting me here in the hospital, as well as the regular nurse practitioner who works with my MO. My only question these past few days has been whether, next time, they will give me the freaking Neulasta shot and spare me another scare and hospitalization. The MOs said yes that makes sense, and that they will talk to my MO about it, but the NP who works with my MO keeps saying, over and over, that Neulasta is never given with this Taxotere regime, and that I probably wont get it next time, and that it is more likely that I get a reduced Taxotere dosage rather than a Neulasta shot. And she keeps saying that I am having this not because of the skipped Neulasta shot, but just because it's "something that I caught around" -never mind that I never had a fever like this in the 12 years prior.
Someone please talk me out of punching this woman in the face next time I see her. What is the rationale of not giving me the Neulasta shot and prevent another misery episode like the one I am going through? Am I missing something? Are there any long term side effects or drawbacks of Neulasta that I dont know of?
Thanks
LaughingGull
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i had taxotere and i had neupogen the entire time....
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laughinggull - I had 6 TCH and 6 Neulasta injections. It is my MO's policy to combat the very thing that happened to you. The NP is bullshitting you - it is common to follow Taxotere with Neulasta, less so with Taxol. You have a neutropenic fever which is fixed with GM-CSF drugs like Neulasta and Neupogen. You had to get Neupogen because it is less than 14 days before your next chemo. Neulasta can only be given if there is more than 14 days before the next dose - that is why they do it so quickly after chemo - usually at the 24 hour point. Your NP is also discounting the damage the AC did to your white cells - all of this is cumulative. Stand your ground on getting the Neulasta and no dosage reduction. If she gives you any crap I will come punch her in the face, lol!
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Thanks Kae and SpecialK
I will stand my ground. I was thinking of scheduling an appointment with my oncologist as soon as he is back, to go over the plan for the next chemo, and kind of do a postmortem analysis of this episode. This hospitalization comes at a high cost to me. I lost an entire week of work; my children freaked out; my parents canceled a trip to be with me instead; and my last three days I have been utterly miserable here in the hospital -and I still have a couple more days here unfortunately. And in the end nothing at all worked, other than getting Neupogen.
LaughingGull
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LaughingG.
These words by TonLee who started this forum kept me in control.
"2. THINGS TO REMEMBER (every step of the way).
1. This person works for you. Period.
2. This isn't a car, it is YOUR BODY. You will live with the consequences long after the tech/Onc/Nurse etc go home to their families and forget about you. You have final say in what happens and what does not happen to it. Period.
3. Advocate for your body like you would a child's, a husband's, a best friend's.
4. No matter what the Dr/nurse/tech/whoever says, they are NOT the boss of you!"
I like to say when I get a BS comment, "When you took chemo how often did you take the Neulasta injection?" Change to the circumstance but that should shut up the NP! This is a favorite I use from TonLee: "7. "Can you give me the research to back that up?""
replacement/etc. Insist on it.Here are some of TonLee's "go to" phrases:
1. "I'm not comfortable with this. Would you mind finding someone else to do it?"
2. "I understand your points. I hear you. But, this is what I've decided. Are you willing to do it?" (Be ready to move on if the professional says no.)
3. "This is not working for me. I'd like to speak with your supervisor."
4. "This is unacceptable. I'm not going to go any further until (insert what you want here)."
5. "I'd like to see the patient advocate on staff."
6. "Look, I appreciate that you tried, but this is not working. I'd like to see someone else."
Best wishes. Stand your ground.
Vicky
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coachvicky thanks for all this food for thought. I am thinking about it. And thanks HapB too.
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LaughingGull So sorry to hear you ended up in the hospital! I got a Neulasta shot after each of my 4 AC infusions. That was followed by 4 doses of Taxol with a Neulasta shot after the second and fourth. I did experience a fever with no apparent cause. Eventually it was determined I had pneumonitis (inflammation in the lungs) that was from a bacterial infection. Once I got antibiotics, I was fever free in a day. It just took them a week to get the diagnosis. Nothing showed up on 2 separate chest xrays. It took a CT scan. I hope you get to go home soon and feel better.
I just had my first CMF/Herceptin/Perjeta infusion on Thursday. I did not get a Neulasta shot. I was told this combo does not normally drop the white blood cell counts like the AC does. I'm feeling okay so far, but definitely going to keep on top of my temperature.
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Laughinggull- what a horrible and scary experience you went through. I hope you feel better soon. Definitely stand your ground and insist on the shot. Take care0
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Hi Everyone -
Gods WithMe - where would I find this movie "Living Proof" since it was made back in 2008?0 -
You can order it on Amazon.
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HapB - I take lisinopril and carvedilol. I stopped taking Tamoxifen at the end of November and have completely weaned myself off gabapentin and duloxitine since then. I only took those to combat the tamoxifen si/e's.
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Hi LaughinhGul - I too have had the Neulasta injections (pod) with each chemo treatment. Like I've said many times, it just amazes me the different treatments across the world.
Thanks Special K. ( I knew Amazon Prime would come in handy this year)
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rljes - if you have Netflix you can also get it there, I am old school and still get DVDs so I am not sure if you can stream it directly from Netflix. You can order it from Amazon and I think it is $12.99, but with Prime you may be able to stream it that way too if they have it available for that method.
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I bought my DVD of Living Proof from Amazon.com.
Vicky
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Cherry-sw and LaughingGull, very sorry to hear you are dealing with some rotten side effects and bumps in the road from chemo. Trips to the ER and hospital stays are rotten. There is no way to sugar coat the triple positive treatment plan. It's a brutal road. I get tired of saying it will get better and wish I could wave my magic wand and make things better.
I feel guilty when I think about my own complaints. When will this end and does it ever end? I finished my last Herceptin last week and had to ring the bell. I've been going to Herceptin infusions alone ever since I could drive myself. My blood pressure was so low that they ordered blood work. It wasn't bad, just low red blood cells etc but not low enough to do anything about it. I felt rotten. I rang the bell and broke down and cried and could not run out of the infusion room fast enough. Sometimes it's just impossible to be positive. Thanks for listening.
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suburbs, i have had to go alone to Herceptin also. Sucks. Just having someone there makes a person feel better. Hugs. Yay on finishing🤗 i have my last one Feb 6. The same day I had my first 1 a year ago. Going to be a hard day.
Has anyone on here had lipo and fat grafting done? I had this done Friday and the lipo area sure does hurt. Wow. Where they did the grafting doesn't hurt much. My PS plans to do 1 more session before they do the exchange
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Suburbs ...
It will get better.
Having that last infusion is tough. I cried too. And I am u nsure if they were tears of joy or piss-i-tive-ity! One one hand, that part is over. On the other hand, the question is "what is ahead?"
Hang in there. It is OK not to be positive all the time. Give yourself permission to grieve and feel.
Love, Vicky
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You all are helping me more than you can imagine. First chemo (AC) last Thursday was rough. I couldn't keep even the Zofran or Lorazepam down, had to go to local ER for ringers and IV Zofran. Ugh. But only 4 of these, and one is done. Feeling strong again and strategizing to avoid bad SEs, dissolvable Zofran for one.
Keep fighting, ladies, you're inspirational.
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You all are helping me more than you can imagine. First chemo (AC) last Thursday was rough. I couldn't keep even the Zofran or Lorazepam down, had to go to local ER for ringers and IV Zofran. Ugh. But only 4 of these, and one is done. Feeling strong again and strategizing to avoid bad SEs, dissolvable Zofran for one.
Keep fighting, ladies, you're inspirational.
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You all are helping me more than you can imagine. First chemo (AC) last Thursday was rough. I couldn't keep even the Zofran or Lorazepam down, had to go to local ER for ringers and IV Zofran. Ugh. But only 4 of these, and one is done. Feeling strong again and strategizing to avoid bad SEs, dissolvable Zofran for one.
Keep fighting, ladies, you're inspirational.
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You all are helping me more than you can imagine. First chemo (AC) last Thursday was rough. I couldn't keep even the Zofran or Lorazepam down, had to go to local ER for ringers and IV Zofran. Ugh. But only 4 of these, and one is done. Feeling strong again and strategizing to avoid bad SEs, dissolvable Zofran for one.
Keep fighting, ladies, you're inspirational.
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suburbs - congrats on your last H, I went alone to all of mine also. DH came to the 6 TCH infusions, but not the H only ones. I was OK with it, just used the 90 mins to read, but I know it can be a lonely feeling. Moving on from here can still be a minefield but I hope you're feeling physically better asap!
homemadesalsa - sorry about your N/V on the AC - totally known for that side effect, there is also a transdermal skin patch called Sancuso that is an anti-emetic and it has a longer active effect than anything IV or by pill. Zofran can cause a wicked headache. You can also return to your center for extra fluids next day with extra IV dexamethasone, that is pretty standard for the dose dense AC infusions. Since you know you have this reaction you may want to request that as standard practice for you. The good news is that if you are receiving Taxol next after the AC is done it has less of a N/V effect.
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You all are helping me more than you can imagine. First chemo (AC) last Thursday was rough. I couldn't keep even the Zofran or Lorazepam down, had to go to local ER for ringers and IV Zofran. Ugh. But only 4 of these, and one is done. Feeling strong again and strategizing to avoid bad SEs, dissolvable Zofran for one.
Keep fighting, ladies, you're inspirational.
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Suburbs,
congrats on your last H. i will have mine next week. i am already imagining myself running out of there as soon as they remove the needle from my port and i dont wanna go there anymore.. but, i will still be reminded everytime i see my MO bec herclinic is next door....
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Sorry for multiple posts/ deletions. I have learning that posting from the phone doesn't work as well as the computer.
HapB- strength and grace with your scans. To me at least, knowing is SO much better than wondering.
ODT Zofran for sure, and I will ask about the Sancuso.0 -
HapB, good luck with your scans tomorrow, sending positive thoughts your way, it is going to be fine, you will see, hugs
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