TRIPLE POSITIVE GROUP
Comments
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HapB, I gained a lot of weight and trying to lose it now, but this body just graves sugar. This pie and ice cream will do wonders, I had a huge slice yesterday after my walk, so much for dieting. This life without any alcohol or sugar, it has no quality indeed, sometimes you have to indulge yourself.I will not have any more sugar today, I had my dried apricots and fruits, but the only thing I am thinking about right now is chocolate ice cream in my freezer. Cherry
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HapB, no profound wisdom but just felt like you could use a hug....(((((((((HUG))))))). Hoping some sunshine sneaks through the clouds. If not....cuss those damn clouds to your hearts content & we will be right beside you giving them our 2 cents too!!
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Absolutely beautiful picture Vicky...great couple you two make. I went to Louisville two years ago. First time, loved it. Went to the Derby too, so exciting. Glad you had a great time.
HapB, I know you are discouraged and disgusted. I may have missed a post. Did you have to stop Taxol too? Can your MO try another AI? I had no side effects on Femara, two of my friends stopped it because the side effects were horrendous. Maybe another could work? Sending you a gentle hug
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Hi all, Just letting you know I am following your posts. At my last visit to my oncologist she said "consider yourself cured, you are cancer-free", she went on telling me the statistics are so good with my type of cancer and not to worry, they will monitor me every 3 months due to the size of my tumor. I wish it was once a year as with most patients. I think it is important for me at this point to listen to the doctor and try to accept and let this go a bit and just live. I read my journals and understand half of it but will not bother finding out more. I am aware of the danger, aware it might hit me again, it might come back and kill me but for now I choose to say to myself I am cured and now I am slowly trying to build up my body again. Very slow I might ad..:) Exercise was never my strong side..:) This illness sucks, there is no cure, science do not know, that is the point with the word cancer, it is not solved. We are all in ways part of a big experiment becoming statistics. I am thanking everyone that has gone before me every day. I would have died within one year was it 2004,targeted drugs was given first time to patients in 2005 in Sweden. Yes, the medications itself might kill me, but the cancer would have for sure without it. I am on letrozol for 10 years and those side effects might show up more severely as time goes by, I try not to think about it. HapB I understand your frustration. It is not fair and it sucks. Trying to find a "cancer free zone" where you do not think about it might be a good idea, just for a few hours, like coach vicky said, perhaps treat yourself to a trip or a day at a spa, or do anything to get your mind off it for a bit...a movie can help..anything...I stopped following many of my previous cancer groups because I do not want the constant reminder..I am not posting as much here anymore which does not mean I do not care...My hair is growing back, I am at work, I meet friends again, I go for dinners out, I am just trying to enjoy each day more fully. I am so happy to still be around. Lots of love to you all.
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Kattis894 ... What a wonderful post! Cancer free and cured! Words we all want to hear.
Hair, work, friends, dinners ... enjoy living... for a long time and to the fullest.
Vicky
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Hahaha Vicky....yes I thought I would never say it...and hair is a good thing..also my new smaller chest...I am so happy to be flat chested like those catwalk models...:) well small on one side and totally flat on the other...a reconstruction has to wait for a long time...I do not want any more operations for a while...but I am happy I am rid of those huge heavy tanks I was carrying before...:) My port is still a reminder it might have to be used again...so "cured" might be a big word but I am still hearing it...
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Yes HapB keeping my fingers crossed you will be ok enough to take a well deserved trip and do something you enjoy, if not a trip something you like to do close by..
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HapB- you are always in my prayers. Whatever decision you made, I know all the ladies behind you. What Vicky said is so truth quality of life is very important, as you said “we beat Cancer to live, not live to beat Cancer”. Take a deep breath my pink sister, get away a day or two might not be a bad idea. Hugs
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HapB, you're welcome. I like Vicky's idea very much, get in your car and take a ride, eat the prohibited food and kick your heels up!
Melanie
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Hapb - I am very sorry that you have had a tough week and are experiencing such terrible side effects. Now your heart health is seriously at risk; you have really been more then your fair share of challenges. Deciding to follow the standard of care or taking a different path is dependent on each individual's view of quality of life. From my perspective, suffering from pain so intense you can't move, taking drugs that have caused serious damage to a vital organ, and missing out on all the things that give you joy does not sound like quality of life. I have a close friend who has uterine cancer that has spread to both lungs. She started her cancer journey in May. The chemo and all the drugs she is taking to counteract the side effects have left her completely housebound and unable to function past the basics like going to the bathroom. She too is trying to decide whether to stay the course or stop and try to regain quality of life. I can't give you or my friend the answer you're looking for but I can share what I would do. I decided a long time ago to choose quality of life over chemo should my cancer return or spread. I have been against chemo way before I was diagnosed, just my own personal opinion based on nothing other than watching many loved ones suffer through the devastating effects. God blessed me with the opportunity to participate in a clinical trial w/o chemo and I was lucky my body responded w/o damage to my heart. Not everyone would be willing to take the risk I did because there are so many unknowns when there is no data to depend on. I felt this decision was right for me and I don't think about what may be, I focus on what is happening right now in this moment. We as individuals have to make the right decision and only you can make the decision that is right for YOU. I pray you find peace in whatever path you choose.
I agree with the other girls that for now, it might be best to step away and treat yourself in some way that brings you true joy. Go away with your daughter and enjoy God's many gifts - watching the sunset on a beach somewhere, having a spa day, or taking a walk and soaking in the autumn sights and smells. I think taking a break from at least one of the drugs might ease some of your side effects and anxiety on what to do next. You have an enormous amount of stress in your life and I find when I am in stress, pain or tired I just don't make good decisions.
The stats you provided sound very promising and are the same my MO provided. I remember coachvicky saying "our bodies, our choice". I don't see that you've had surgery - can you stop treatments and go to surgery so you know the pathology? Is that even an option? That would certainly help with your decision.
Life is full of tough decisions and there is none harder than the one you're trying to make now. You have to choose and I have faith you will make the right decision to move forward. You must get your joy back! Keeping you in my prayers, hugs0 -
Coachvicky, what a wonderful picture of you and your hubby. You are an inspiration to us all on what we can look forward to. You are truly beautiful in so many ways. I hope to be as proud of my new boobs as you are when I'm done with recon - I wasn't going to proceed with revisions or a nipple tattoo but your excitement (and my PS wanting to finish what he started) has me looking forward to my new body
Kattis - congrats on being cancer free and cured. I LOVE your attitude to listen to the doctor and just live. I am taking that approach too and living in the moment. I have turned the corner with my mood swings I was having a month or so ago and now celebrate each day for the gift that it is. Thanks for sharing your positivity!
Shelabela, you go girl! You definitely deserve to get the boobs you want after all you have been through. I had DIEP recon and have a flat stomach for the first time in a long time. My flat stomach keeps me motivated to eat healthy so I don't ruin the new body my PS is creating for me. You're approaching the finish line with Herceptin, yay for you
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Cherry, I will keep you in my prayers as you proceed with the additional infusions. I know that decision wasn't easy for you but it seems like you have discussed all options with the best doctors available to you. Sounds like you have found a way to recapture your joy through cooking. Congrats on your gumbo
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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
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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.0 -
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.
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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.
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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!
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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
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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 0 -
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!
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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
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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!!!
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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
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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
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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
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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
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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.
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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
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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
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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
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