TRIPLE POSITIVE GROUP

kae_md99

will removal of ovaries for premenopausal women reduce the risk of recurrence for er positive who will be on lupron and AI? or is lupron and AI enough?

SpecialK

hap - if you feel confident in your oncologist's recommendation after a careful review of your health concerns, I think it is worth a try. I'm sure your daughter is worried - I know mine was!

moody - sweet compliment! The silver lining of my personal experience is helping others - glad that anything I have said has been useful!

Kae - the SOFT and TEXT trials both point to an advantage for younger premenopausal patients to use ovarian suppression for recurrence prevention. Having an ooph would mean you could avoid Lupron, but the younger you are the greater the potential for heart and bone issues that stem from the lost eatrogen

kae_md99

specialK,i am 44 years old and i will be taking AI and i have already started Lupron. thanks

PatinMN

HapB, I had taxol and herceptin, and was 60 when diagnosed. It wasn't bad - other than some manageable issues with constipation and diarrhea, I felt fine throughout. I did take l-glutamine and B6 to ward off neuropathy, when I started to feel some twinges after about the third treatment. I had hoped to persuade my oncologist to give me herceptin alone, but he wouldn't do it. After reading more about the aggressiveness of HER2 tumors, I was glad I got taxol too. My tumor was 5mm.

Taco1946

Hap - our diagnosis look about the same although I haven't had cancer previously. Had a intercerebral bleed 10 years ago and my recovery from that has left me grateful. I did 8 rounds of taxol but the neuropathy got bad and I quit. (I too had the feeling that I should finish it for my family but my MO said I had had enough to make if work.) Side effects left me within a few weeks. Herceptin has been fine. I'm having some joint pain, especially first thing in the morning, from the daily pills (tried to go back to get the spelling of it and lost the whole message) but it is manageable and gets better as the day goes on. It hasn't been uncomfortable enough that I don't continue with life as it was before. My very best friend lived with stage 4 for 5 years and entered hospice care about the time I was diagnosed. She never let herself be a victim and I learned much from her, including I think, that I will know when I have had enough. I'm guessing you will too. Not a lot of us seniors on these threads so know especially that I am thinking about you and do understand your reluctance to have lots of invasive treatments.

PatinMN

HapB, yes, I worked 4 days a week during treatment, and walked/did mild exercise at the gym 3 to 4 days a week. Always driving myself as I live alone. I used cold caps to save my hair, and was therefore able to keep my privacy at work (except for those I worked with directly, who of course needed to know why I was only there 4 days a week). My heart function remained in the normal level. A lot of people are affected so much by the Benadryl you get with taxol that they don't feel they can drive home after treatment; by the time I finished cold capping (four hours after finishing taxol) I could have driven, but my employers hired a limo service for me on chemo days!

PatinMN

HapB, I used Penguin cold caps, and they work really well with weekly taxol. I wouldn't say I had no side effects from taxol - but they weren't bad by comparison with other chemo regimens.

kae_md99

when did your hair start growing after chemo? did you use any shampoo/ supplements to help ? thanks

SpecialK

It took me 4 months to have enough hair to go without a wig, and I took Biotin, 5,000mcg a day, I also used Bosley shampoo from my hairdresser.

kae_md99

Thanks SpecialK. anybody here with experience with Rogaine?

ElaineTherese

Four months is about right. I finished chemo in December and was going wig-less by March. It was quite a shock for my students as I went from someone with shoulder length-hair to a very short do in a few days.

kae_md99

Thanks Elaine , my kids are freaked out with my bald head ,they run away if i don't wear my beanie in the house and i cannot wear a wig... so a little help speeding up the growth after last chemo will help.

Tresjoli2

Kae my kids couldn't handle it either. I had to wear scarves all the time.

SpecialK

hap - an LVEF of at least 50 is considered normal, and is usually anywhere between 50 and 70. When monitoring heart function during Herceptin doctors look for a 10 point drop, or a 10% drop between quarterly echos or MUGA scans. If you sustain a drop that is deemed unacceptable, Herceptin can be postponed or discontinued.

HelenWNZ

I finished chemo in October and went hatless in January. It was summer and so hot. My hair was so short but I thought it's the other persons problem not mine. Last week I had my first haircut. More like a trim really to try and sort out my grey poodle mop of hair. My echo results are considered normal at 58 a drop from 64 to 68 in the beginning. I only have 4 herceptin to go so if I keep plodding on she'll be right. I'm so looking forward to finishing the herceptin as I will then find out what side effects can be attributed to letrozole. Actually today is one year since my surgery what a crazy journey I'd much rather not be on. Take care everyone

Suburbs

Hi all. The lesion found on a CT scan was removed last week via an out patient procedure under general anesthesia. I won't get my results until next week. The waiting is torture.

I have a BMX with reconstruction scheduled in a few weeks. I'm not sure if the one surgery and outcome will put the brakes on the plan for the second. This is rather ironic as I had started out convinced I would not have reconstruction. I am on week three of Prozac. Appointments with surgeons and more waiting are upcoming.

TCHP number 6 has put me out of commission for two solid weeks moving from couch to bed in a state of total inertia. That cumulative effect of chemo really sneaks up on you. My eye brows which had been thinning slightly basically fell off after TCHP number 6. I will lose only two nails, one on each hand, soon.

Today, I feel some energy returning, ready to get back on my tread mill and join the land of the living while avoiding looking in any mirrors. Thanks for listening to my tales of woe as it's been cathartic to post them. Onward.

shelabela

I did not lose any nails! I had one that started to lift but that was it. Now that I have completed the 12 weeks of Taxol it is back to normal.

I am on AC right now and it is totally kicking my butt! But I only have one more of these and I am done! Yay!!!!!

After my last Chemo on June 12 I have a few weeks of "rest" then I have a total Mastectomy on July 19th. I am told I will need to have at least 4 nodes removed and then they will test the others at the time of surgery to see if more need to removed. Then I will have rads for 5 weeks. When I started this journey I never thought I would get through Chemo, Seemed like so long.

My MO talked to me yesterday about what would come after all this. Herceptin for a year then Tamoxifin (SP) for 10 years she said. Maybe talked about removing my ovaries, So many things to think about. If they remove my ovaries will I not need to Tamoxifin for 10 years???? If removing them doesn't make a difference why do it? Anyones else dr talk about this? I am only 43, and where as I am done with having kids and could care less about anything like that.

bareclaws

shelabala, good about the nails! I've got six Taxol done (after AC, so ours was just the opposite) and nails seem OK so far. They have changed shape somewhat, but no darkening or lifting. I keep them short, still trimming them every week, and unpolished. I'malso icing during Taxol.

ElaineTherese

Suburbs, sorry to hear you're waiting for test results (again). My eyebrows have never fully recovered from chemo; I just pencil them in a bit. And, my poor eyelashes are still thin and stubby.

Shelabela, Yeah, AC was worse than Taxol. The SOFT study showed that ovarian suppression (or an oopherectomy) + Tamoxifen was more effective than Tamoxifen alone for younger (pre-menopausal) women. You could do ovulation suppression (monthly shot of Zoladex or shot of Lupron every three months), but an oopherectomy accomplishes the same thing. The SOFT study also showed that ovarian suppression + an aromatase inhibitor was better than tamoxifen or an AI alone for younger cancer patients. I'm currently doing Zoladex + Aromasin, but will talk to my new OB/GYN about an oopherectomy on Monday. My old OB/GYN was not a fan of oophs; he said that overall, women who kept their ovaries lived longer than women who didn't. But, I'm not sure that I want to take Zoladex for several more years. Hope this helps!

shelabela

ElaineTherese,

Yes that does give me some more to go off. Is this SOFT study online yet. Can I check out info about it?

ElaineTherese

Shelabela,

You can Google "SOFT study and breast cancer" to find info about it.

Here's a link to the journal article:

http://www.nejm.org/doi/full/10.1056/NEJMoa1412379#t=article

kae_md99

i started Lupron more than a month ago and now i am feeling the SEs. joint pains,insomia,cold/hot flashes. i did wonder today if its just better to have oophorectomy, will have to ask my OBGYne. i will be on Lupron and AI for 5 years and i will turn 45 in a month....

sportsmom16

Hi All- posted last week about anti-depressants and interaction with Tamoxfin-apparently almost no one else is having these concerns so I am going to broaden my question as to what folks did to fight depression- wonder if everyone else just toughed it out-

I am crying everyday and not sure why- the remaining Hercepton treatments aren't bad and don't think the reconstruction will be as hard as the mastectomy so not sure why I am completely breaking down now. Did anyone else take anti-depressants to get through that - is it a bad idea-- I cant go back to work crying every morning- tried meditation, journaling, exercise, writing gratitude lists- not moving forward - just cried the entire way on my walk- at my wits end

kae_md99

hi sportsmom, i am like that sometimes. i will have my last TCHP on friday and chemo was brutal which caused my anxiety. my PCP gave me anti anxiety pills, clonopin and it helped a lot. just wanted to share. i dont know though if it has interaction with Tamoxifen...

Suburbs

hi sportsmom. I avoided anti depressants for a few months but a couple of days of intermittent crying helped me realize that I needed the help. The multitude of treatments and steps one faces when triple positive make a tough journey even more difficult. I haven't taken them long enough to know if they are working but I am glad I started.

sportsmom16

Thanks Kae md99 and Suburbs and all who replied-- Honestly for me, the emotional toll has been harder than the physical. Everyone is kind but they think now that the mastectomy is done- its over. They forget about the reconstruction, the rest of the medication, the still having not much hair, the worry.

Someone told me just get over it- I would love to get over it. It will be so much better when my hair grows back and I can get rid of that hot wig.

I guess you have no idea until it happens to you. Thanks for being kind.

moodyblues

My first Chemo session went very well, no allergic reactions, thank the Lord!  Feel very tired from the Benadryl but, it may also be from the lack of sleep last night from the steroids.  Long day, arrived at 9 and left at 4.  Neulasta at 6:30 tomorrow evening and _{I have been taking my Claritin to offset some of the pain that is associated with that.  Felling good, feeling positive.}

_{Cross posted} 

deni1661

Hapb - I sympathize with your angst over the chemo or no chemo decision. I am participating in a clinical trial taking Herceptin and Perjeta only, no chemo. I had great results, just had mastectomy and recon. Path results no cancer in lymph nodes or margins and a few single cancer cells in the breast tissue. I posted a reply previously with the trial details. I can post again if you want more inf

deni1661

moody - glad to hear your first chemo went well. Stay positive, take care

kae_md99

sportsmom, i totally agree with you. you don't have an idea unless you have cancer. hang in there...