TRIPLE POSITIVE GROUP
Comments
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MACTAZ,
I'm sorry to hear that your AI has caused so many problems! I've had the opposite experience; my side-effects have generally diminished the longer I'm on Aromasin. (Not sure about the depression -- I'm still on Celexa for that.)
Yes, definitely ask for an AI vacation! I hope your oncologist supports your request. We're always here for you. ((Hugs))
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Ingerp, you said you didn't need neulasta so I checked your signature. You only had taxol which does not need neulasta and it hardly affects the blood levels. Those of us who had AC regime had neulasta as that is what my MO called “the demon chemo"
Jkeet, so sorry youhave to join us here but this is a great community for support, education etc. I wish you the best going forward with everything❤️
Lovely weekend to everybody.
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thanks boogirl for the info on SQ Herceptin. I’m hoping it becomes available soon so I can switch. I have 2 more TCHP then finish out H until April next year.
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MACTAZ, please feel free to vent all you want. That is why we are here to support one another, I had my share of venting here last week. I was just tired of it all and was really depressed which is very so not me. I am the life of the party, always happy inspite what life throws at me but being on Lupron and Letrozole for 14 months did a number on me and got me having sameside effects you complained about and I am only 39, 40 next month so I can imagine how worse yours might be.
I spoke with my MO last week and I am off AI and lupron for now, switching to Tamoxifen in 2 weeks then we see how it goes. Quality of life is as important as the kind of treatment we get. I don’t want the cancer to return and at the same time, I do want to enjoy life as it is.
Hoping you feel better off it as I do already and I don’t have the need to call a psychiatrist any longer for depression.
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My periods started today and it looks like regular bleeding i used to have before chemo. Any of you have had periods while taking chemotherapy?
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Hi Neeli - I had one period during chemo, just after my first round of TCHP. Since then it has not returned. I’ll be curious to see if it ever comes back. (I’m 48, pre-menopause
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Neeli,
I had periods for the first four months of chemo. They stopped during the fifth month, and haven't come back. (I was 47 and pre-menopausal.)
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finana2,
Welcome to this family of online support. I'm sorry that you've had to join, but these forums are very helpful. It's nice to have others that know what all this 'feels' like.
Sending you positive thoughts & praying for all of us going through this mess.
Angie
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Thank you adhoney,,
I have learned so much from these forums already. I see your MX is coming up later this month. Good luck. Mine won’t be for another six months but would love to hear how it goes for you.
Stay strong
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I am in Europe, so I am receiving subcutaneous Herceptin, too. Everybody here does. I have to say it's very convenient, quick and simple. I didn't have a port so it's also good for my veins. It's given in my thigh, it lasts a few minutes. No pain to speak of - I just feel the needle going in (level of pain about like a blood draw) and then, oddly enough, I don' t feel a thing. The nurse is just injecting slowly and it spreads under the skin, it doesn't go into the muscle. After the injection, I am always told to wait about 30 minutes before going home. This is just a precaution, as I understand it. I've never had an issue, so I just tell a nurse I am feeling OK and leave.
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MACTAZ, feel free to vent, that’s what we are here for. I had my baseline bone scan and my t-score is -2.2. I am not on AI, I am on tamoxifen and triptorelin. I had some joint pain on knee and hip for a week and then it’s gone. I am 50 and premenopause. My dr messaged me says I don’t have to worry about the tscore, just keep taking vitamin D.
Neeli, I had period the first chemo, then it stopped, my blood test still shows that I am not completely in menopause, so my dr put me on tamoxifen
Jkeet, I did need Neulasta during chemo. My insurance won’t pay for it at the beginning since it says only 15% people need it. I have to prove that I need it first. 10 days after the first chemo, My WBC dropped to 1.7 and started low fever which was scary, then insurance approved it.
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LilyCh:
Tell your wife congradulations! Also, I don't know if it has been mentioned as my memory is a bit poor at the moment and I have not been following the threads closely but the clinical trial for the HER2 vaccination is still recruiting and I think your wife might qualify for it.
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Shelabela ... good to hear from you again. Sorry about the other problems and it reads like you are on top of this despite the rounds of doctors and tests upcoming. Did you try Zofran with the iron pills? BTW, I coughed thru Herceptin and have never stopped. I am happy you are still please with your recon results!
Flnana & Jkeet ... welcome to the place you never wanted to be. Make the most of your cancer journey. If you want, you will learn a lot about yourself, life, and what matters. Reread ToniLee's opening remarks to this forum. Always remember it is YOUR body and YOUR life. Long after the medical people are gone, you will be left with the results. Get what you want. Saying "no" and saying "stop" are always options. I worked thru it all. Missed an out of town training on day 1 and day 2. Day 1 I was in chemo. Day 2 I flew to the training to join the rest of the team. I learned I was stronger than I thought.
Boogirl ... great about your hair and LilyCh great about your results and the fight your partner made!
Bheg79 ... give your port healing some time. If you are really worried, get it looked at.
Wheatscapes ... I don't know about "shine." When I wanted to stop my first AI, my MO said, "if you stop you won't be cured." He changed my AI, LOL.
PrincessM ... Your plan reads well thought out. It is YOUR quality of life!
Have a great week everyone!
Love, Vicky
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ElaineTherese, MACTAZ and WC3, thanks so much!!! We had a (small) party during the week to celebrate
WC3, would you share more information about the clinical trial? I would really appreciate that. During the last infusion on Friday, I asked the MO if there is a need for further treatment, she basically said TC plus one year HP is already sufficient enough for my wife's dx. Even if we want to think about the Nerlynx, we can wait until two months later when we follow up with her. She said give my wife some break time
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Hi Everyone, Its nice to pop in and see some familiar 'faces' every once in a while. Its comforting.
Shelabela - sorry to hear you might have auto immune issues - I have them and unfortunately chemo made mine go in full flare up mode.
Welcome (sorry you have to be here) Jkeet & Tinaziller. Just remember - Everyone reacts differently thru this journey.Tinaziller I can relate - I'm 61 and have tried Arimidex and Tamoxifen with horrible SE's. Stopped, and having a difficult time trying to talk myself into going back on Tamoxifen. will start with 5mg every other day ….. one of these days.
Take care
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LilyCH: CONGRATS to you & the wife for finishing HP!
I'm struggling with AI's also. I started on Letrozole, had bad leg cramps so she switched me to Anestrozole. Seemed OK for a while, then I started noticing severe fatigue and depression. I conducted my own little experiment the past week, stopped taking it and I've felt a LOT better. So here we are. I did resume taking it yesterday like a good little patient, but I'm also considering quality of life. The PA at MO's office said it reduces the risk of recurrence 50%. Meaning that if my recurrence risk was, say 4%, the AI reduced that to 2%. I'm not sure it's worth it. Still pondering...
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For those experiencing side effects on assorted aromatase inhibitor drugs, you might find that switching manufacturers of the same generic, switching to the name brand, or switching to a different drug can alleviate some side effects. Generally, finding the fewest additives and fillers works the best, but that is not universal. Here is a tool, previously posted by coachvicky, for determining which manufacturersadd what, and also a link for the name brand Arimidex, not paid for through insurance, but rather supplied directly, for $30 per month.
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Here is the link to the HER2+ vaccination clinical trial for those interested.
It is only open to those who did not have a pCR and who are more than 30 days out from finishing chemotherapy but not more than 6 months from the completion of Herceptin.
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WC3, would it replace Kadcyla? My surgery is tentatively scheduled for 8/8 and MO is talking about Kadcyla if there is any live cells left.
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WC3 - I don't see the link?
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WC3 where is the link? I don’t see it.
SoecialK I didn’t even think about switching manufacturers, I complained to my MO and he was more than happy to stop the lupron and letrozole. Been flying solo for almost two weeks now. To start tamoxifen next Monday.
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Special K - thank you for that link!!!!
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dawn - it is unlikely your oncologist would endorse replacement of an approved drug like Kadcyla with a clinical trial vaccine, which you would probably have to travel to get, and which is not yet on the market with FDA approval.
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SpecialK, I saw MO today and asked about it. He said he's looking a Kadcyla for any residual disease. He knew of the vaccine but didn't recommend it.
I don't see him again till the end of August and I was pretty emotional about that. Such a weird feeling.
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dawn - exactly on the Kadcyla - have to go with the proven drug, the vaccines are still unproven and in the experimental stage. I participated in a Her2+ vaccine trial (GP2/GM-CSF) from 2012-2017 that followed the same protocol as most of the current ones, 6 months of monthly injections, then boosters for two years, then followed for two more. A number of these trials have shown great promise, including the one I was involved with, but unfortunately none of these drugs has come to the market yet. I think this will be yet another tool in the arsenal for Her2+ patients but we are not there yet.
Of course the goal is to stretch out the MO appointments, but I get it on feeling funny about it - I love that I still see mine even though I was diagnosed almost 9 years ago (supposed to be annually, but I can’t seem to “graduate” to that yet!), many are seen in survivorship clinics at the five year point, or handed off to their primary care doc, but mine sees me and does labs. I am happy with that arrangement.
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neeli, I had one period on chemo, then nothing for four years...in March of this year,.one period again, and nothing since.
Feeling sad today...one of my very best friends got diagnosed this week with BC at 44. Er - PR- Her2+ Trying to wrap my arms around her and share what I have learned on this crazy journey.
Hi to all the newbies! Sorry you had to join us...
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Sorry, here is the link.
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After 10 years I still see my oncologist every 6 months. I just love him and have complete trust in him. I had the chance to go once a year but asked if I could continue every 6 months and he is fine with it. It's peace of mind for me.
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Cowgirl13, I've only been with my oncologist 5 months but I trust him completely. I really was upset at the thought of not seeing him for a month and a half. I've seen either every week or every other for the past 5 months.
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Kat22: Thanks very much for your warm words. I am sorry to know the side effects from your hormonal medications. Would tamoxifen still apply to you? my wife takes that, seems manageable although it only has been 4 months so far.
WC3: Thanks so much for providing the link for clinical trial.
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