TRIPLE POSITIVE GROUP

rljes

Hi Aliceneed - I too started Arimidex (a year ago) and only could tolerate it for about a month. First came the horrible bone pain, then the itchy rash all over my body - I already take daily prednisone for my auto immune diseases. I stopped taking Arimidex immediately and MO gave me Tamoxifen. We had a tiff over the amount to take, I wanted to start out at 5mg and he said no. We came to an understanding at 10 mg. I have yet to take it because of my severe Hot Flashes. (I started out at 1/2 dose of Arimidex too) Best Of Luck

rljes

Hi Ingeris - If this is true that Hormone Therapy is more beneficial than chemo and Herceptin, I'm screwed. (I know you said its more beneficial to you)

I plan to see a Doctor in a few weeks to give me a Nerve Block (SGB) to help ease the Hot Flashes. If it helps with the Hot Flashes, I wonder if its too late to take Tamoxifen? Is there a cut off point that Hormone Therapy doesn't help if you havn't started? I'll read your link - thanks!

Taco1946

If I'm reading this right, I can quit my AI's immediately. They don't change my outcome. Can that be right?

ElaineTherese

Taco,

I've played around with that calculator a bit. If I were older when diagnosed, the AIs would matter less.

Ingerp

I’m really no expert on the calculator, but wanted to point out that tumor size is in mm, not cm (so my 1.6 cm tumor went in as 16). People obviously have more tumor features specific to them that are not reflected (like ER+ %). And I definitely would not make any treatment decisions based solely on the calculator, but it might be a discussion point with your MO.

coachvicky

Aliceneeds

Document this with your insurance. Track what "brands" you have taken. If these are generics, go for the brand name.

Coach Vicky

JaBoo

Coachviki, I am so glad your surgeon was willing to operate and stop the "what ifs". That's so good you know for sure what it was. 🌼🌼

I have finished Herceptin in September and that's it. In my country, there's nothing more I could do.... I am on Zoladex + Tamoxifen.

I have told you people here about my osteoporosis, dx last year prior to starting hormonal therapy. In June, my blood work was bad, bone resorption markers off the chart. That was end to Aromasin - that and the pains I had. So I got switched to Tamoxifen I started preparations to take bisphosphonates - had 3 wisdom teeth surgically removed and one more endodontically repaired. I was scared as hell to take the bisphosphonates... I did some reading into it, it really is a scary medicine. I got OK from the teeth surgeon and so I went to my osteologist. He ordered a new DEXA scan and blood work. And guess what - just 6 months on Tamoxifen, and my good eating and weight bearing exercise and vitamins, my bones are stable. The bone markers are exactly normal and my spine even managed to grow a tiny bit of material, only +0,3%. It's almost nothing, but it's not declining, it's stable and even recovering a bit. So my osteologist doesn't think the bisphosphonates are necessary at this point. I am so happy... I have my yearly plan to have 10K steps daily and I am using a weighted vest. The osteoporosis was diagnosed in my spine, it was - 2,6 last year, now it is a bit better.The hips were OK, not even osteopenia. So I hope hope hope to be able to stay away from that scary medicine... I am taking prescription strenght vitamin D in two various forms and vitamin K2,all as per my osteologist.

Ingerp, glad to "see" you here, I hope you are well! 🌹🌹

Ingerp

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.)

hapa

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?

Annie60

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.

JaBoo

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!

Alicesneed

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)

Ingerp

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.

JaBoo

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)

ElaineTherese

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.

coachvicky

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

WC3

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.

FNPMom

Hello WC3, what do you do you do to offset the hot flushes? - I'm about to start tamoxifen with my kadcyla - thank you

LizLynnP

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!

Paloma1211

Me too, FNPmom. Anyone have experience to share regarding taking Kadcyla and tamoxifen simultaneously?

neeli

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

WC3

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.

Ingerp

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.

ElaineTherese

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!

Taco1946

Ingerp - I sent you a PM.

rljes

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.

hapa

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.

ElaineTherese

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?

Taco1946

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?

rljes

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!