TRIPLE POSITIVE GROUP

deni1661

Melanie, I will keep you in my prayers for good results on your genetic testing. I look forward to hearing what your nutritionist has to offer. There is so much cancer diet information available, it will be interesting to see what a professional has to say.

I cannot believe what that receptionist said to you. There is no comparison, not even close, reduction to breast cancer. I hope you set her straight. Sometimes people just don't know any better so they need a little help learning how to think before they speak.

I am so excited for your upcoming recon...it truly is a milestone for you to celebrate. I have my revision surgery Nov 30th. Each step gets us closer to coachvicky status

deni1661

Hapb, sorry I didn't realize about your surgery. Clear margins and nodes is the best you could ask for. I had the same after 7 months of HP only when I had my surgery. It does seem everything you're going through is to prevent recurrence. I asked my MO when I was having terrible pain from Arimidix if I could stop taking it and he said that shutting down the hormones is the most important preventative measure against recurrence. His opinion. He did however, say that quality of life was a priority and that is when he switched me to Letrazole. MY SE's are better on Letrazole, some days worse than others, but nothing like what you're experiencing. I have done acupuncture and that has given me great relief. It doesn't take away the pain completely but definitely helps.

I did not have issues with heart problems on Herceptin. But it seems like I might have pulsatile tinnitus, which started about half way through my HP infusions. I thought it would go away after stopping Herceptin but it is getting worse. I have my 3 month check up on Nov 29 so this is on my list of side effects to discuss with my MO.

PauletteK

HapB - even I don’t belong to triple plus group but I do read most of the posts to learn about BC, and you have been with us in July group all the time. We went through some good and bad time together and we understand so,e of your feelings not all. You always in my prayers.

Suburbs

CoachVicky, you rock. Great photo!

Moodyblues, that NP is incompetent. Any medical professional that does not take a complaint of bone pain from a breast cancer patient seriously needs to go back to school. Alternatively, they can hang out here and get an education rather than doling out the standard advice to stay away from the internet.

HapB, I hear your frustration. There is an ask the professional page for breast cancer on the Johns Hopkins site which would be another possible place for advice. In addition there is a her2support org that I waded through months ago while educating myself. Have you considered looking for another oncologist?

Shelabela, glad to see you back here and to hear that you are doing well.

rljess, it's not unusual to start an AI with Herceptin after chemo ends. I started 5 weeks after surgery and 9 weeks after chemo ended. If you are triple positive, it would be more unusual to wait to go on an AI until Herceptin ends. Your question is a good one. The conventional wisdom is that Herceptin is a breeze after chemo and that the side effects are due to the AI and not the Herceptin. That's just my personal observation.

Cherry-sw, have you been to physical therapy? If not, perhaps ask your doctors. It really helped me and continues to help me improve my physical condition.

EDL0516

Hello! Just realizing I should have joined this group when first diagnosed. I was diagnosed with Triple Positive IDC in May 2016 at the age of 31 (diagnosed during my pregnancy). I have my last Herceptin November 13th and will have my port removed at that time. Will be planning on having reconstruction Spring 2018. Currently debating whether I should get risk reducing mastectomy to left breast. My MO, SO and plastic surgeon advised against it as my genetic testing was negative. Wondering how you ladies proceeded with that decision. Thank you!

coachvicky

Welcome EDL0516!

Sorry you have joined this club but you will get TONS of support here.

Congratulations on getting to the end of your treatment. And then you will have your "deportation!"

I had different cancers in both breasts so my situation was different. I am sure there are others with your situation that will be more helpful.

Best wishes.

Vicky

deni1661

hello edl0516, sorry you have to be here but this is a wonderful group for support and information. These wonderful ladies have been my lifeline and inspiration! I had 2 tumors and enhancements in my left breast so the only choice I had was mastectomy. I did ponder removing the right breast and after many discussions with my BS/PS, I decided with removing just the left, mostly because genetic testing was negative and I have no other risk factors.

I wish you find peace with your decision. Best of luck. We're here for you so never hesitate to reach out if you have questions or need a virtual hug

T-Sue

Emily, I'm sorry about your diagnosis but glad you found your way to these boards - such a supportive group of women! Elaine said it well when she described how we all approach the lumpectomy/mastectomy (MX) decision differently. Because of a second tumor, I had to have a MX but opted for a double MX because I just always have had a fear of bc and I thought that this was my "chance" to get rid of both breasts! I'm happy with my decision and I'm glad you are at peace with yours! Good luck on the 28th!

LTWJ, that just SUCKS about your margins. I'm so sorry. And to add to it a hassle with insurance, ugh. Try to focus on your healing and not the stress! Sending you hugs!

edl0516, congrats on wrapping up your treatment! This time tomorrow, you will be finished with infusions and your port! As I explained to Emily above, I choose a bilateral mastectomy instead of the needed unilateral mastectomy. I was also BRCA negative. It was the right decision for me. I've just had my breast reconstruction surgery and am happy with the results. You will find the right answer for yourself!

Suburbs

EDL0516, I had dense breasts so mammography was not as effective for me and caught the tumor late. A subsequent MRI found more cancer and so a lumpectomy was not an option. Removing the other breast was for my peace of mind and for symmetry of reconstruction. I had no interest in have another mammogram. I started very early with them as my mother had breast cancer. Years of call backs were nerve racking.

It's a very personal decision. Hope you find peace with yours

Jagger2015

Thank you Taco,

I talked to the oncology nurse who asked me to stay on Arimidex ( generic version) until my check-in appointment in December. Asked if going on the name brand would help..she replied “not likely”

I will possibly try another AI to see if I fair better.

Thank you deni!!

I see a physiotherapist every 2 weeks and continue my trained self massage...I think some days just feel difficult ...I imagined I would somehow get back to feeling like my ol normal self following surgery and treatment and am experiencing some reality based frustration..oh well....onward 👍

I am having my piic line removed this Week so I can begin swimming again...I realize i will be getting IVs every 3 weeks..hoping for the best!!

I appreciate all the advice I receive here...this is an amazing group of triple positive women!!!

coachvicky

Jagger2015,

In my experience, your Oncology Nurse is incorrect.

There are about 17 manufacturers of the generic Arimidex. Switching to the brand name gave me back quality of life. I think (personally) it is easy for someone to discount side effects. For us to be successful with a 5 to 10 plan, our side effects must be at least considered.

There are 2 Arimidex forums on BCO. One deals with women with few problems and the other deals with women with significant side effects. Please check them out.

Vicky

Jagger2015

Thank you Tampa!!

From what I’ve read...40-50% of us on AI experience arthralgia. It is inflammation related to low estrogen in the body.they think. It seems to be worse after sitting or laying down for long periods of time. I have started taking my cannabis oil again which does help more than NSAID’s. The ratio is high in cbds, low THC so it doesn’t affect my brain but is helping with sleep.

Has anyone been experiencing numbness in hands and fingers? Carpel tunnel?

Any replies would be most welcome

Jagger2015

Thanks Vicky!

Beautiful picture of you and your husband btw!! I appreciate your advice very much!

I will ask my oncologist for the name brand and hopefully it will be better in terms of SE’s and be covered by our provincial medical plan 🙏

I will also look for AI info in other forums...thanks agai

coachvicky

Jagger2015,

If you plan for the brand name is higher than a $1.00 a day, go to the Arimidex website and get it there.

And thank you ... it was our first picture post treatment. (Except for the bell ringing.)

Vicky

Suburbs

Hi HapB. I have not had those issues but I just found the message board I mentioned previously. It is her2support.org. There is a topic in the forum called "Herceptin/Tykerb" which has a thread for Herceptin side effects. All of the issues you have mentioned are also noted there as well. It's clear that some people have more pronounced side effects.

deni1661

Jagger2015, I definitely have the arthralgia you mentioned. I can only sleep for 1-2 hours at a time because the pain is so bad at night. I take Advil PM every night which I don't really like to do, so I might try the cannabis oil you mentioned. I'm glad you will be able to swim again soon. I don't have numbness but I have pain throughout both arms that feels like tendonitis or carpal tunnel. However, I have a torn muscle in my rotator cuff on the left, but my right arm hurts all the time too. Could be the inflammation from AI...

Hapb, sorry to hear you are still battling those heart issues. My blood pressure was erratic while I was getting the Herceptin but it seems better since my infusions ended. I pray you find a solution to your SE's soon. Take care

Jagger2015

Coach Vicky ...I might just have to do that..yikes.......the cost of name brand Arimidex “30 day supply” here in Ontario is $190.00 vs 52.00 for generic brand...quite a difference😳


Again, Thank-you for your help

HelenWNZ

Big day today I had my port removed. Another box ticked off. Currently coping (just) with Letrozole. I'm on 3 monthly visits with my surgeon for the next couple of years. I like my surgeon but after our 1st 3 monthly catch up last week I left his office thinking more was left unsaid than said. He wanted to tidy up an area of flabby skin and I said why would you if I have a reconstruction. His non specific reply got my life expectancy concerns resurface again. He said that being advanced stage breast cancer perhaps I should be looking for quality of life rather than put my body through more surgeries. I see his point but ......I realise at stage 3C the odds are against me but to have a nice set of perky boobs would be nice

Suburbs

HelenWNZ, congratulations on your port removal. That's a big milestone to celebrate. As for reconstruction, that's your choice to make, not your breast surgeon's call. Perhaps consider having a consult with your oncologist and a plastic surgeon in order to make a decision. Sending support and positive thoughts.

jam826

Kattis894, so happy for you, that your doctor said you are cured. I was also glad to read that statistics are good with your type of cancer since I have the same type. I've been so depressed since being told I'm her2+ and worrying about recurrence, can't thank you enough for your happy post. You made my day, I feel much more hopeful about my future.

jam826

I just wanted to say thank you to all you wonderful ladies, your positive posts have lifted my spirits. I've been so depressed since being diagnosed and reading your posts has helped me a great deal. God Bless you all!

coachvicky

Hi Helen,

Congratulations on getting that port out!

As for quality of life ... I think that includes as many surgeries as I WANT and the boobs that I WANT.

I have a rule about any medical person I see on this cancer journey. If in their presence I feel the least bit uncomformatbale (and I define what uncomfortable means), that person is no longer on my team.

As the woman who started this forum TonLee said: it is your body and you will have it and the decisions made about it long after the doctors, surgeons, nurses, techs ... are long gone. That is a rough paraphrase.

Go for what you want. Sometimes I think what if this crap comes back. What would I do? I would go back to surgery and get bigger, high profil boobs. Don't get me wrong, I love my reconstruction and it is perfect for my frame but if I had a little time left on the planet, I just might go for the DollyParton style. LOL! And I would eat lobster once a week with butter. Just sayin'

Vicky

moodyblues

Helen, He would feel very different if it were him or his wife or sister. I would let him know what you want and see if he can provide. I see that you had radiation and that can cause some issues with breast reconstruction but surely he could have had a better approach when talking to you about breast reconstruction. When you are many years down the road, will you regret not having those new boobs? If so ask again and get a second opinion!

Melanie

T-Sue

Congratulations KB870! Big day for you!

Jam, I'm sorry about your diagnosis, but glad you found this supportive forum. I see that our diagnosis is similar (though I had two small tumors). Hope you are feeling good about your treatment plan. Ask lots of questions here! We've been there!

Hugs from Colorado!

Lita19901

KB, could you explain why you're not going to take the AIs? You mentioned that your numbers don't make sense to take them and I'm not sure what that means. Were your doctors okay with it? Thanks

coachvicky

KB...

What great news you bring! Congratulations on finishing.

Vicky

jam826

T_Sue, Thanks for the hugs and support. My doctors scared the heck out of me when they told me about the her2, they focused so much on that that when they got around to saying anything encouraging, it was too late I was in shock I believe. They left me worried about recurrence and that's something I have no control over, all I can do is follow the treatment plan my doctor feels is best for me. I don't understand why with Herceptin around the doctors weren't more encouraging, any cancer is scary and I feel they let me down not being more positive that I might never recur. I'm so glad I found this forum, the positive stories give me hope that I won't recur and can someday not be so worried and focused on breast cancer. I should have had some comfort in knowing I'm early stage and taking every precaution to not recur. I wish I'd had more compassionate doctors.

sfar

HapB- I had to stop Herceptin after about 5 treatments due to a drop in my LVEF. It was put on hold while I waited and checked with Echos every 6 weeks. During that time I started feeling palpatations and went to the hospital where they determined that the palpatations were "normal & not threatening". I think I was just scared. I began seeing a cardiologist who put me on heart meds to lower my blood pressure. He has done different tests to see if he can pinpoint exactly what damage there might be, but hasn't determined specifics. In the meantime(5 months) my LVEF has returned to slightly below normal. I see the cardiologist next month and he probably will request an MRI to further investigate. My blood pressure is great now.

Please note that I am 61 and have a family history of heart problems. I also had taxotere and radiation and wonder how much that affected my heart. I lost 30 pounds in 5 months and became anemic.

There is a department at Cleveland Clinic for oncology related heart problems that you might look into. Hopefully, your heart will return to normal and Herceptin will be continued. My understanding is that they take a break to make sure your heart function returns to normal quickly as it does in most cases where heart complications arise. In my case my oncologist felt it was much too slow returning to the point where we began.

sfar

HapB-As I recall, prior to any treatment my LVEF was 54 and went down to 40 at which point she stopped it. My doctor took me permanently off of Herceptin when it continued to go down to 30-35 even though I had been off for 12 weeks. I think she would have waited it out except that it wasn't creeping back up at all. Luckily it is now at 47, which is below normal but better. I haven't felt bad other than the palpatations and fatigue. Somewhere on this site I read that there have been studies in the UK showing that 3 months of Herceptin provides almost as good protection as a year. Looking back I think I actually completed 8 Herceptin treatments which was half of what I was scheduled for. I still feel nervous about not having completed it and can relate to your anxiety over having heart issues now. Hopefully your cardiologist will be able to improve things for you and set your mind at ease.

rljes

Hi All !  I just had my Port put in yesterday - I'm at the Point Of No Return. I am hoping my MO won't put me on Anti Estrogen blockers until Herceptin is well established.  I want to be able to tell the different SE's go with what.  So far no mention of taking them.  

I've read on different posts - Some fast before chemo - some say eat a little and have something in  your stomach - with my treatment course - any suggestions?   It will take - what 5-6 hours - do you eat while there? what suggestions?  I've only had diarrhea a few times in my life.  So I'm not sure what to eat to prevent, while during chemo - No body has given me a tour of what to expect. 

Also - How do you prevent your fingernails from 'lifting' - (can't ice - I have Raynauds) 
        - How do you prevent scabs and zits forming on your bald head once I loose my hair? (I want my head to be smooth like          a baby's bottom  

Jagger2015 - I am curious about the CBD oil.  I tried it (I'm in a state where cannabis is illegal period, and they raided all the health food stores taking away the CBD OIL - then gave it back to the stores to sell 'at their own risk' ) Anyway - I tried it the (Charlottes Web) and it gave me a strange migraine - on the left side of my face.  Huh.  In what ways does it help you? 

 Hi Helen - When I was first Dx, on the left side, I told my BS I wanted both breasts gone - not because I was afraid it would spread - but I wanted to go flat, no recon, and didn't want one big droopy breast in the way.  She was NOT pleased about taking a perfectly good breast - but I insisted and happy with my choice.   

Take care Everyone.