TRIPLE POSITIVE GROUP
Comments
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Hello JaBoo and congratulations on the good news!! I should be getting a bone scan sometime this spring (I think--it will have been two years) and I am curious what will show up. At this point, though, I'm not even sure who will order it. I have a mammo and RO/MO appointments in April. Maybe sometime around then?
(Edit: this is good! I just called my MO's office to ask about scheduling another one this spring.)
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Jaboo - glad the switch is working out for you. I had osteopenia in my hips and osteoporosis in my spine at my baseline DEXA, but my fracture risk was only ~2.5% so my MO didn't recommend any treatment. I am scheduled to get my rescan in March and am dreading it. I am not excited about biophosphonates, but they do supposedly confer a survival advantage for hormone positives. Was there any change/improvement in side effects going from Aromasin to Tamoxifen?
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Had my last treatment of HP yesterday!! Whoo Hooo!! My MO wants me to keep my port for two years and I have to see him every three months for two years with blood work and a breast exam every time. I am interested in what the treatment plan for after chemo has been for others.
Ingerp- my MO said the AI was as important as chemo. I am having my share of SE's but am managing them.
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ingerp, thanks!
hapa, yes, the change in SE's was+is huge. The amount of pain on Aromasin was just ridiculous! I never knew there were so many joints in a hand untill all of them started aching and waking me up at night! Now I am about 7 months into Tamoxifen and I have like 5% of the pain I had. I don't even know about it, until I concentrate.
And thanks, Hapa, for the info on your osteoporosis. It actually gives me comfort to know that your doctor also didn't see any necessity for bisphosphonates with similar scan values as mine. I know they should give some survival benefit, but the cost is very high. I mean the cost in SE's or even fractures... I am treated with vitamins, D3+K2, magnesium and collagen.
Annie, congrats on finishing!
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Update: after my discussion with MO on rash & hormone therapy this morning - she didn't think it was causing the rash because the last 2 times it flared up I was not on the aromatase inhibitor. She also didn't think it was the HP since I've had that since April - every 3 weeks.
So she sent me to the dermatologist.
Dermatologist thinks it is folliculitis caused by Herceptin. She said it is becoming more common with Herceptin. So I'm getting a round of antibiotics to see if that helps. (they biopsied one too just in case)
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Oy alice—hope you get some relief and answers.
JaBoo—interesting to read what you’re taking. I never took supplements but have started since chemo and everything else. Currently taking D, magnesium, and collagen. I’m too lazy to look it up—is K important? (And I got a bone scan order from my MO. Just waiting to hear from insurance if I can schedule it soon or have to wait a full two years since my last one, which would put me at April 26th.
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Ingerp, yes, K2 is vital to be taken with D3 and enough calcium - which is best coming from food. I am by no means an expert, but my osteologist prescribed vitamin D3 and told me to buy K2 from Generica, just the cheap one. I googled a lot and found out the research is there. So I am taking that. And a simple clean collagen. Bones have a lot of collagen.Bone broth is great, better in fact.
Alice, now when you said it, I had something similar while on Herceptin. Many inflamed folicles, esp. on thighs... Didn't pay much attention, but my MO sent me to a dermatologist when it started also on my face. The dermatologist prescribed some atb as a liquid, I was to put it only on the inflamed spots. It helped on my face, but the thighs got their red plumps all through Herceptin. I still have dark spots there, like scars, but no new ones. (finished Herceptin in September)
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hapa and JaBoo,
Aromasin + Zoladex gave me full-blown osteoporosis, but my doctor isn't treating me with biophosphonates. I'm getting Prolia, and my bones have graduated to osteopenia.
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JaBoo ... GREAT news on your bones.
Alice ... I remember breaking out on Herceptin and almost yelling at my Oncologist that this rash had better not spread to my new boobs! I used a steroid cream.
I ran again today on the beach. I still like my new boobs. They don't bounce like the originals and I no longer have ruts on my shoulders.
I just feel feel so blessed and happy.
Vicky
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rjles:
My hot flashes on Tamoxifen haven't been particularly bad. I can feel them onsetting before I actually get hot and if I take immediate action I can usually offset them to some degree.
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Hello WC3, what do you do you do to offset the hot flushes? - I'm about to start tamoxifen with my kadcyla - thank you
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Ajmin-
I’m sorry you have to join the club. I have the same treatment plan and 3 kids! Though yours are younger. I finished the taxol and now I’m doing my 3 does of just Herceptin ( but I was switched to Kanjinti). Believe it or not the chemo time goes by quickly - I think because you are foggy and tired. And you really are just taking 1 day at a time
Make sure to ask for help - especially with meals or laundry. And rest as much as you can.
You are strong and will come out of this fine!
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Me too, FNPmom. Anyone have experience to share regarding taking Kadcyla and tamoxifen simultaneously?
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I am doing both tamoxifen and kadcyla. I only started tam last week and haven't been doing great on it. Nausea, no sleep, fatigue, bodyache. I feel like chemo days again
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FNPmom:
Now that it's winter, I just keep the room cool...around 68F, and dress in layers. I can feel the hot flash coming on before I feel hot so the second I feel a hot flash coming on I throw some layers off.
I tend to get them more at night when I'm in bed. I just throw the covers off and maybe my shirt if I put one on to begin with.
During the summer it's a little more challenging. If I stay very still that seems to prevent them but if I'm out and about all bets are off. I had one last summer on a hot day at farmers market and thought I was going to faint. I luckily found some shade.
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I assume everyone knows about having a fan blowing on you all night? I do that in summer even without hot flashes. I think the white noise helps me sleep too.
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Yep, Ingerp. I love my fan! When we first moved to this house 23 years ago, I wondered why the original owners had installed ceiling fans in all of the bedrooms. Now, I'm grateful for that decision!
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Ingerp - I sent you a PM.
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Hot Flashes - everyone is probably tired of hearing of my Hot Flashes. I live in layers. I only have the heat on in the utility room to keep the pipes from freezing, Its 10 degrees and I have the fans on, no heat, the window open and Ice packs on my neck and face. Nothing helps. Full blown panic attacks. I feel like I'm being cooked from the inside out and 100lb weight on my shoulders. I am practically homebound. I am terrified to go out in public. (well, I can go to Walmart, they expect craziness- ha) I dread the summer so much that I'm in panic mode just thinking about it. If I could find Estrace on the black market I would start taking hormone pills again. Its That BAD.
Annie60 - you are so lucky to have your MO see you every 3 months with labwork. Mine will see me, but no labwork - what would we talk about: The weather? I've been told I can have labwork once a year since I've been off Herceptin almost a year now. scary.
Sorry so negative - but I'm not in a good place.
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rjles - are you still on hormonal therapy? If I were in your shoes I would have to seriously consider stopping it. You might also benefit from seeing an endocrinologist. What you're experiencing sounds extreme. If you are housebound from side effects, you are not living just existing. There's no point in beating the cancer if the cure ruins your life. I would probably be negative too in your shoes so no need to apologize for it.
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rjles -- What hormonal therapy (if any) are you taking? Have you thought of switching to a different variant to see if that helps? I agree with hapa that your hot flashes sound extreme. What does your MO say about them?
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I don't know if this is the right place to post this but I got notice from Amazon today that my Turmeric/Curcumin 1500 by Be Herbal was recalled. There was a very long list of supplement recalls. Is anyone taking one that isn't on the list?
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I'm not taking any hormone therapy. I had a complete hysterectomy about 25 years ago and was on Estrace until Dx - I stopped immediately and after Chemo, the severe Hot Flashes started. My MO is an *ss. He just tells me to deal with it. My OBGYN has had me on Effexor, Paxil, gabapentin, Oxybutin, and told me to try Belladonna, but I don't think so!
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rjles - ok, well that is quite a conundrum then. Have you tried any estrogenic supplements? Black cohash, soy, etc.?
also, have you seen an endocrinologist?
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rljes - bless your heart. I have hot flashes - every once in while they are so extreme that I get nauseated. But not anything like your's. Call your MO. Switch meds - also I have to take gabapentin for neuropathy pain and it helps with hot flashes. There are other meds that will help. You cannot let this ruin your life. There is help. I hope it gets better.
Annie
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Dont know exactly where to post this so gonna stick it here in hopes someone might have a similar experience...
Has anyone stopped chemo and just received Herception and Tamoxofin?
I had a pretty bad reaction last week to my first infusion. Doctor is going to try to get Abraxane approved but if not he is going to leave it up to me to try one more time with more pre-meds but he is concerned the reaction will happen again. I guess it was worse than I thought. Plus I had tremendous back pain and am limited on pain medication that I can take without issues.
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I stopped Taxol after 8 infusions with MOs blessings because my neuropathy had gotten VERY painful. She did say that if I had node involvement she would have pushed me harder to try to continue. Will you be able to get just Herceptin? I was under the impression that it couldn't be given without some chemo to "prime the pump." Hope I'm wrong.
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AT BCO.org, there have been breast cancer patients here who have received just Herceptin and hormonal therapy. I don't know how that affects chances of recurrence, but their doctors felt it was the best path forward given their intolerance of chemo. Sorry to hear that you've had such a bad reaction to Taxol, rlmessy! Has your doctor mentioned the possibility of giving the infusion at a slower pace?
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rlmessy - what kind of reaction did you have? Some do better with Abraxane due to the absence of the solvent present in the other taxanes, and most MOs can get it approved for their patients who experience difficulty. Here is some info regarding Herceptin only as monotherapy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5759796/
And an older look:
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SpecialK...it was an anaphylactic reaction. Doctor put it between a hypersensitivity and shock only because I did not completely pass out. It happened within seconds of starting the drop. It is not just that reaction but I also developed debilitating back pain when the steroids wore off and I have a super hard time with pain meds. It's kind of a one/two punch.
He is willing to let me try with more pre meds and stringing out the steriods and even reducing the dose he is just really cautious that it might happen again and it could be worse.
He is submitting to insurance company for Abraxane approval and if it is approved we will move forward with that for sure. If not, I think I will be done with the chemo and he will move me to Herceptin with Tamoxofin. He was ok with that and I was too only because I am lymph node negative, not a guarantee but better odds.
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