TRIPLE POSITIVE GROUP
Comments
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Those of you who kept your port how much are you being charged per flush? I was charged $462, when a lab draw is only $199. This makes absolutely no sense to me.
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PhoenixCruiser,
I've kept my port, but have no idea about the cost of the port flush. (I need to look at my bills!) I get my port flushed at the same time I get my Zoladex shots; I guess I assumed that my bills were primarily about the Zoladex (which is expensive enough).
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Thanks Elaine. According to several sites it should be around $160, this is something I'm going to fight.
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AngelsGal, I now have Stage 3 chronic kidney disease and I would suggest that you be seen by a kidney specialist to find out exactly how much your kidneys are being affected. It may not be much at this point and I say this not to scare you but it is so important you know exactly where you are since you are also diabetic. I'm so glad I followed through with finding out all about this because I lost 45 lbs n 18months, and I did not starve myself or stop eating carbohydrates...i quit eating all the junk I was eating and have a very clean diet. Feel free to pm me is you would like to hear more. Good luck.
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PhoenixCruiser, I finished Herceptin May 2018 and still have my port. I have it flushed every 4-6 weeks, costs me $51.89. The port gives me no problems and not really in a hurry to have removed. I have used my port during my colonoscopy and this month twice during cataract surgery.
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Thank you BJI, that is helpful.
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Hi AngelsGals47. I had 7 months Herceptin/Taxol and 3 Kadcylas. Also have Diabetes. Tried Letrozole for 8 days but it totally messed up my blood sugar. So far my kidneys are OK but I refuse to take any meds that make the diabetes worse. It's under very good control with a Dexcom 6 and careful diet. Also losing a lot of weight, 113 pounds lost so far, 68 more to go. I've had to stop Kadcyla because neuropathy pain has become excruciating. Terrifying. Chemo was killing me. So many side effects from all the 'treatments.' Trying a lot of natural supplements because I cannot go further with chemo / ai. This is not fun. I have a Palliative Care intake next week.
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Hello All,
I did a search and didn’t see this in any discussion. I finished chemo in April, I’m continuing with Herceptin every three weeks, and I’ve started Tamoxifen. I didn’t have my period after the 1st month of chemo but it feels like it’s going to come back despite the Tamoxifen. My dilemma is what birth control method should Iuse? My MO said she would be ok with the Mirena IUD even though it has estrogen. Has anyone else had this issue? What other options do I have?
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What about the Paraguard IUD? No hormones, just copper. And it lasts for 10 years I believe.
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Same here BJI - with my port. I finished Herceptin spring 2018, and not in any hurry to get it removed. I don't do well on Versed and Fentanyl. I go every 6 weeks to get it flushed (insurance covers 100%) then when I have ER visits and my 4 month blood drawl - its there. Plus going to have a colonoscopy one of these days. Maybe next year I'll have it removed. I forget I even have it most of the time.
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Pennyk, my first to-do when I was diagnosed was to have my Mirena removed. I was highly ER/PR+ and the breast surgeon and oncologist insisted it be removed ASAP. You might consider having a consult since hormones are our enemy. I take Arimidex now and call it the estrogen killer.
And hello to everyone. It’s been a while since I posted. My diep reconstruction went great but my post surgical infection has been a bear. I had all the mesh removed and hope I can get back to some kind of normal life. For the time being I am hooked up to an IV pole a few hours per day. Not fun! Hope everyone is doing better.
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Hi
Thank u elaine and mactas for responding. I have another question for you and anyone else.
I think age is a factor. Im 55. I am also concerned on taking fosamax because for a couple years I have been having acid reflux. Sometimes it comes up in my throat. After taking the pill with lots of water and staying upright for 30 min what if I have acid refux later in the day or in the week. Will this hurt me?
Has anyone else taken a different med? Side effects? Shot or infusion or different med?
Has anyone been off taken off and any side effects?
Thanks
Brandi
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Brandi,
I'm now on Prolia for my osteoporosis. It's a shot, and I get it every six months. I don't get any side effects from Prolia. Prolia is more expensive than the biophosphonates, however, and your insurance may not cover it. Talk to your oncologist about it.
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I've looked at my pathology report several times since my biopsy. I pulled it out this morning to see what my ER/PR and Her2 status were. ER was 100, PR <1 and Her2 +++.
I just noticed something in the comments that concerns me. Maybe nothing. I'm no doctor but wondering if anyone else has this.
"The carcinoma in this biopsy shows extensive mucinous features, however a final diagnosis of mucinous carcinoma requires excision of the entire mass and more than 50% of the entire tumor must have mucinous features. Her2 positive mucinous carcinoma is relatively rare, but are documented in the literature. There are also articles that report traztuzumab resistance in Her2 positive mucinous carcinomas. At least two articles I reviewed allude to the possibility that resistance might be predicted based on the mucin subtypes expressed by the tumor"
I'm reading this as Herceptin not being effective for Her2 positive mucinous carcinoma.
Dawn
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Hi Dawn,
Sounds like it is not very common and it is uncertain whether or not if would be resistant, even if mucinous. It would have to be confirmed by pathology surgery, then even if confirmed mucinous, it could or could not be resistant to Herceptin. You are receiving neo-adjuvant treatment, and will have surgery later, correct? Did you have AC chemo. or are you only getting Taxol + H + P? (This is just me being curious, I was also IIB and got a ton of chemo)
The good thing is that, even if your tumor turns out to be both mucinous and resistant to Herceptin, nowadays you have many options. Kadcyla has just been approved to treat Her2+ breast cancer when there is residual disease after neoadjuvant treatment, and it is a very powerful drug. And another drug has just been approved to treat Her2+ breast cancer that is resistant to Herceptin, I think it is trastuzumab deruxtecan or something like that. I would say dont panic. Even if resistant to Herceptin your cancer wont grown under Taxol, and upon surgery they will be able to see the response and decide how to blast any remaining cancer with the appropriate drugs.
Also, did you (and everybody) check the new guidelines for staging? Sound like some of us would downgrade from stage II to stage I with the new guidelines. I was wondering if somebody discussed to with their MO.
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Glad to see you Suburbs. That infection is not a bear, it's a flame-throwing dragon! Sorry to hear you are still dealing with that. Mesh gone, yay!
Thought of you recently because I am in Neratinib, two months in right now.
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hope everyone had a good holiday weekend.
For you nausea ladies, ask for the Transderm Scop Patch and try the OTC Sea Bond acupressure for your wrists, learned this trick from other groups and it worked perfect for my 1st round.
As for the Herceptin ... look up this study they did ...Kadcyla is Herceptin on steroids. Fewer side effects.... KATHERINE STUDY....Trastuzumab emtansine (Kadcyla®): an antibody-drug conjugate that targets the HER2 pathway and delivers toxic drugs to tumors; approved for subsets of patients with HER2-positive breast cancer... new data shows that high risk women ( positive nodes and/or residual disease after neonadjuvent treatment at time of surgery) should get Kadcyla for a year (adjuvant) due to Katherine trial. Kadcyla is chemo ( TDM-1) inside a Herceptin Linker.
Question: we are all Triple+, wondering why some are AC&Taxol and some, like me, TCHP?
And is the neulesta Shot a CHOICE for you, does your Onc demand you take it?
Anybody have natural Tips or Tricks to keep WBC up? I am researching these new infusion centers near major sports towns, they offer high dose Vitamin C and there is some research this helps kill off and flush your systems to minimize side effects, many 'integrative/ Naturopath Oncology centers offer...
Hang in There everyone, we got this, don't give the BCB (breast cancer bitch) any control or power over our lives, yes a few adjustments but it is our lives so it is up to each of us to live our lives as best we can...
Keep F*cking Going...Always an Adventure ~Kim
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Hi Kim,
The treatment depends on the specific case. Grade of the tumor, size, whether it has already spread to the lymph nodes or not -in my case I am IIB, but I already had palpable cancer in my nodes, confirmed by biopsy, grade 3. Then, even with these characteristics being the same, MOs have some leeway to use slightly different flavors of the same plan, e.g. Taxotere + Herceptin + Perjeta versus Taxol + Herceptin + Perjeta. Ask your doctor about the specific reasons for your protocol if you have questions.
I got Neulasta after each AC infusion (of which I had four), then when I moved to T+H+P, they stopped giving me the Neulasta, and after the first T+H+P my WBC went to the floor, I got a fever and spent 5 days in the hospital in observation, and in the end they gave me another similar drug to Neulasta, much smaller dose, I think it was called Neupogen. Going forward, I got the Neupogen after each T+H+P infusion. I believe there is really no magic bullet to bring your blood counts up.
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Kim, I read everything about Kadcyla, and asked for first and second opinion about it, and I think you are wrong to say that has fewer side effects (I am assuming you are referring to fewer side effects than Herceptin + Perjeta, which is the treatment that Kadcyla will replace -when there is residual disease after neoadjuvant treatment); Kadcyla is chemo, and has much higher toxicity than Herceptin + Perjeta.
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Kim,
My MO recommended AC + THP because, in her experience, more of her patients finished this regimen than TCHP. Also, my heart was in good condition, which made me a better candidate for AC than some (heart damage is a potential side effect of AC). It was just MO's personal preference, based on my health.
My white blood cell count was usually within normal range. Like Laughing Gull, I did get Neulasta after each AC infusion, but I didn't get any "white cell" boosters during THP. I was just lucky; I continued to work through chemo, which meant I came into contact with plenty of undergraduates and their germs. (My favorite was the one who came to my office to tell me personally that he had mono --- dude, you could have just emailed me that!). Good luck!
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Laughing Gull, I completed 4 rounds of AC and just had my 5th Taxol. I tried looking on the mucinous carcinoma board but nothing there related to her2 positive.
Thank you for the information on other drugs available. I guess seeing herceptin may be resistant bothered me.
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ElaineTherese....I smiled reading your mono comment...I also worked through chemo, in the high of flu season, taking the subway every day and spending my entire day in a crowded office with 100 people, all sniffling and coughing. It was fun
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Thank you all for your input.
LaughingGull, As far as the Kadcyla, sorry, I should have clarified that was all copy and past from the Triple+ FB group.
I will keep moving forward.... I start with new Onc June 19th, who is more interested in me as a patient than Insurance telling him what meds to give and not give.... fingers crossed
Sad note: my hair is coming out, they say I will be bald by my 2nd round June 3rd ...
But on the good side: no hot, heavy, long hair to deal with during the summer, AND I don't have shave my pits or legs Whoop Whoop for me!!
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Kim,
Truthfully not having hair for six months was a big relief in many ways. In summer you will look great with bandanas and sunglasses. Your hair will be back before you know it.
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Kim - I hate to break it to you but my leg hair kept growing up to the bitter end. It did seem to slow down a little, but is growing back gangbusters now. The pits were the first to give up and the last to come back though. To this day I have only a few stray pit hairs.
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LaughinGull, from your post to mother nature's ears !!
Hapa, nice!! Way to go bursting my bubbles, no more rainbows and unicorns for me ... darn it ... giggle
Ps: how do people tag each other, on some boards when ppl write back my name is in blue like a link and I get a message ... hmmmm
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Had my last HP infusion today!
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congratulations Kat22!!!!!!
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DawnS1962: I also have mucinous type breast cancer and I’m getting TCHP. My tumorshrank from 2.3 cm to less than 1 cm after 3 of 6 chemo treatments.
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I had my last Herceptin last week! So happy to get them all after several pauses
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