TRIPLE POSITIVE GROUP

Ingerp

Oy Jstarling--so sorry to hear that. I'd be pretty bummed if I had to delay. Just keep in mind that this too shall pass. . .

SpecialK

jstarling- has your MO discussed a platelet infusion with you? It might be enough to raise your count enough to receive chemo. Are you getting Neulasta

Jstarling

Special, platelets have been low for three of the five chemo treatments but have always come back With an extra week. Dr said she would consider transfusion if it delayed chemo more than a week. I have been taking 5 Xerxio shots after each treatment to stimulate the platelets and white blood cells. This afternoon she sent me a happy email with the good news that the Echocardiogram showed that I can resume Herceptin with next (and last!) chemo.

SpecialK

jstarling - Zarxio will stimulate neutrophils (immature white cells), but does not help with platelets. If your WBC continue to be low I wonder if it didn’t work well for you.None of the granulocyte stimulating drugs have an effect on platelets, it is not their function. There are currently no meds that help platelets - and they are the most mercurial and fragile of the blood cells, they are very short-lived, only about 5 days. Glad to hear that the echo is good and that you’re coming to the end of chemo. Hopefully Herceptin without accompanying chemo will be easier on your counts.

shelabela

jstarling , that's great you can get that last herceptin in. There is just something about finishing if you can that feels so good. Hope your platelets bounce back

LaughingGull

Checking in ladies!

I will get my laparoscopic oophorectomy tomorrow. This will be outpatient surgery. Wondering when it will be reasonable to start normal life after the surgery. And particularly when I will be able to start working out. Any guidance much appreciated.

Way to go, jstarling!

Shelabela hoping you are recovering nicely

Best to all,

LaughingGull

Photogirl81

hi ladies,

Quick question, as I was catching up with posts, this kinda caught my eye:

SpecialK: you said that AI-s are more benefitial with ovarian suppression than Tamoxifen. I have never heard about it. I am 36, and get a monthly shot called Lucrin (stops my ovaries). I guess it is similar to Lupron or Zoladex, just here in Europe. And I am given Tamoxifen with it. Is this not the best I can do? Please let me know your opinions ladies. My first MO gave me this treatment, and after he was "forced" to retire, a different MO carried on with this. Never mentioned anything about AIs. Thanks

SpecialK

photo - I would discuss switching on several fronts.

Refer to the SOFT and TEXT trial results that indicate superiority of aromatase inhibitors, particularly for younger premenopausal patients.

http://www.ibcsg.org/NEWS/Pages/PRESSRELEASETEXTandSOFTtrialsSABCS2017.aspx

This article discusses in section 4 resistance to Tamoxifen among Her2+ and ER+ patients, due to crosstalk between each aspect.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2746389/

ColleenS80

Hey ladies,

Elaine thanks for letting me know! I may have questions.

Thanks to all for support about upcoming surgery. However I saw my surgeon yesterday to drain a seroma, and she was scaling back her aggression about mastectomy and I think having second thoughts about whether it was really necessary. I hate when they speak before they really think! I love her but it's frustrating to be mentally thrown back and forth. She and my oncologist are speaking on Tuesday and then I have an appointment with surgeon, so I guess it's still up in the air until I see her Tuesday.

Laughing, I'll be interested to hear how your procedure goes as I will probably be doing it sometime in the next few years. Best of luck that it goes great!

Photo-I would suggest asking as well. I'm getting ready to start hormone suppressing shots and an AI- my onc said she wanted this because it's a better choice than tamoxifen.

Hope you're all having a lovely evening!

deni1661

Jstarling, so sorry about the delay. That has to be frustrating. Hope everything returns to normal soon so you can finish up. Hang in there

Shelabela, hope your recovery is going well.

Colleen, I feel terrible for you on this back and forth deal with the mastectomy. I assumed the MO and surgeon would have discussed the details before telling you their recommendation. Try not think about it too much (easier said than done). Sending hugs

Laughing, sending prayers for a successful surgery tomorrow and quick recovery

shelabela

Good Morning! Things are going good here! Recovering great. Pain in very minimal now. Breast area is still swollen but I was told about 2 month wait for them to settle.

Here is a picture of my leg 3 days after the lipo.

Colleen. How frustrating! As if this isn't stressful enough. Hugs

Laughing, thinking of you today!

SpecialK

shelabela - try some topical Arnica gel on your bruising - it has helped me.

shelabela

specialk, thanks will look into some

SpecialK

shelabela - I used this, they have it in my regular grocery store.

http://www.arnicare.com/google/?gclid=EAIaIQobChMIg5Wgya3A3AIVm4SzCh3JbAc2EAAYASAAEgLNevD_BwE

deni1661

shelabela, wow that bruising looks painful. glad to hear you are in less pain and recovery is going well!

coachvicky

shelabela

Arnicare is great. I have used it too.

That is some serious bruising and convinced me not to fat graph! I hope it clears up soon.

Vicky

hapa

shelabela - thanks for posting that pic. I'm not ruling out fat grafting based on your bruising, but it is nice to know what I'd be getting in to. Hope it all heals up and you're happy with your new boobs!

SpecialK

Just wanted to say, I have fat grafted 5 times, but have not used the legs as a donor area. The first graft was purely aesthetic and was the largest volume fat harvest using the abdomen. The next three were done over the 18 months when I had lost the implant on the left and the grafts were done to improve the skin integrity and used the hip area. The last one was done at my most recent exchange/downsize in 2016 to soften and correct some scarred areas, and again used the abdomen. I did not have bruising like shelabela's photo - this is an individual response that depends on the patient, the donor area used, and the technique.

shelabela

specialk, yes I bruise very easy. Sorry didn't mean to scare anyone. And they did say legs bruise more then most areas.

SpecialK

shelabela - I think its good that you posted and had a photo- all possibilities should be presented so everyone knows how this goes - no worries!

hapa

shelabela - I agree with SpecialK! Thanks again for the photo!

Blownaway

Finally met my new MO (new insurance/all new doctors). He seems to be a real straight shooter. He told me that with optimal treatment, 12 out of 100 women will have a recurrence and that since I was not able to complete chemo or herceptin and have stopped taking my Tamoxifen, my chance ofrecurrence would be much highe. He also said that there would be no cure for me if I do have a recurrence. I asked him given my problems with side effects, what would he have me do if I was his sister. He said he would beat me over the head and make me take the pills for 10 years, not 5. Once my dexascan results are in he will decide which one to have me take. Has anyone had better luck with an AI?

ElaineTherese

Well, Blownaway, I don't know if I'm a poster child for the AIs. But, after 3.5 years on generic Aromasin, I don't get hot flashes anymore. My bone health has gotten worse -- I went from borderline osteopenia to full-blown osteoporosis. I'm now on Prolia. Hope you find an AI that works for you!

SpecialK

blownaway - my MO started me on Femara and I just took the generic offered by my pharmacy. At the six month point I developed a trigger on the thumb of my dominant hand, so I switched to Arimidex. Trigger went away, but at 18 months I developed a trigger on the left hand, one toe and the ankle of that same side. I also bumped my opposite side knee on a trailer hitch and despite no injury it swelled and turned hot and red. Had a cortisone injection, and switched back to Femara but this time the generic had very few additives and I was able to stay on until they stopped manufacturing it - about three years. I now take another generic and haven’t had new triggers so far. I would suggest that if you experience issues look for the formulation with the least additives, or see if your MO can write your prescription for the brand name. If that doesn’t work I know you can get brand name Arimidex direct for $30 a month with no insurance claim. Many of us have to experiment with finding a generic or brand name out of the three AI drugs that is the best fit - no rhyme or reason to which is best. Like ET above, I was osteopenic prior to diagnosis and suffered bone loss, corrected with Prolia - no problems. I had brutal hot flashes before diagnosis, no better or worse on the meds.

coachvicky

Blowaway,

I think I like your new MO.

I bet he will work with you for success with an AI.

I am on Arimidex, the brand name not generic. I tried 2 generics and did have side effects. Like SpecialK I have trigger fingers and with exercise they are not a problem. I completed PT to learn how to do the exercises. I have one hot flash a day schedule for when I wake up, LOL.

The best thing about Arimidex is that it gets my off my ass to workout. I believe women who workout handle Arimidex. There is a BCO forum called something like "Doing Well on AIs." Like TripleP, it is positive and supportive.

Like Elaine, I take Prolia with no side effects. I get it in a numb spot on my left arm. I take my own band aids b/c the ones at my center hurt when pulled off. That is the worse. My point? You can so this.

I have become very fond of your postings. I see your picture and see a beautiful woman. I would like you to be around for as long as you can. Please, consider an AI and get on it.

With love, Vicky

LaughingGull

Hi ladies,

Happy Sunday to my dear positive sisters.

Shelabela, ouch! I wish you a speedy recovery. Thanks for posting. Hang in there.

I had mastectomy in April and I still have the expander....reconstruction was delayed because of radiation. I will get a silicone implant only because I have not enough fat for the fat grafting procedure. I am still happy I chose mastectomy over lumpectomy. Had I picked lumpectomy I would have needed additional surgery and probably a mastectomy anyway because they found more cancer than expected. I also realized I cannot care less about my missing boob. I have small breasts and as long as I look more or less normal when clothed -and I do even with the expander, using padded bras- I am happy.

Colleen, I had my oophorectomy on Friday. Thank God for laparoscopic surgery, it was a walk in the park compared with real abdominal surgery. I am in a bit of pain, but just like my normal ovulation pain. I am on tylenol only. Yesterday I was out and about all day. Today I will go out for a long walk too. My primary care physician told me that since I am in chemopause since I started chemo I probably wont notice anything new from losing my ovaries. Hope she is right.

Blownaway, you got clear advice from your MO. Thanks SpecialK and Coach for the info on AI. I am reading all that with great interest because I will get started on AI soon.

Question for those on AI: I finished radiation like ten days ago, and had oophorectomy on Friday. My MO says he will wait a month and a half to start me on AI, because of the radiation. But I had no radiation side effects at all (other than browned skin) and my cancer was highly driven by hormones (95% for both ER and PR); so I would rather start AI sooner rather than later. Did you get a delay like this, and does this make sense?

Peace and love to all,

LaughingGull

SpecialK

laughing gull - I did not have radiation and had adjuvent chemo, my MO wanted a month between last chemo and the start of Femara, was just on Herceptin at that point. Many docs like to give you a breather between major aspects of active treatment but I’m not aware of any specific reason so it might be worth it to ask if you can start earlier if that is what you wish, although the delay may be due to your recent ooph - your MO may want to shake loose any healing or SEissues there first.

coachvicky

i started Arimidex in April of the year I finished Herceptin in August.

I think i read in the "Doing Well on AIs" forum that an MO started her patients on an AI every other day for a month to ease them in and check SEs.

Vicky

LaughingGull

Thank you SpecialK and Vicky.

Vicky, I see from your timeline that you started Arimidex a month and a half after the oophorectomy. Were you strongly hormone positive? I like the idea of starting on AI every other day. I am keeping an eye on the "Doing well on AI" forum as I am determined to do well on them too.

I didnt have a complete response to chemo (far from it) and I am terrified of my hormones driving cancer growth. I will see the MO in two weeks so I will request more detail.

ElaineTherese

LaughingGull,

My cancer was also 95%ER+/95%PR+, and I started my AI about a month after surgery but before I started radiation. I do think that my MO wanted to give my body the chance to heal before I started on a new drug regimen.

Interestingly, my new MO believes that my cancer was more driven by the overexpression of the HER2+ protein than it was by hormones, even though my cancer had plenty of receptors for ER. Who knows? Good luck!