TRIPLE POSITIVE GROUP
Comments
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Suburbs, congratulations on almost being done, I know exactly what you mean when you say you did not know from the beginning how hard it was going to be. I remember the BS telling us after the biopsy that at that point I was scheduled for surgery and radiation and can be back to work already in September. Then I started reading and the whole truth just fresker me out. Next week will be six months since my diagnosis, the whole life that I planned for these months was not pit on- hold these plans and the way we lived our lives are not there anymore. I really want to come to terms with my diagnosis and finding a new normal, I think I made some progress with the help of the anti-depressives. I want it all to be over but I know that I will always be scared of every ache and itch. This is awful but this is a new normal I suppose. Sometimes I tell myself what should I have done with my life prior diagnosis if I had known that I will be diagnosed and I always think about spending more time with the family, enjoying time with my kids, travel if I will be able to and now I am telling to myself that is what I should do after the treatment, I shall live the way I want to during the time I have left and I will be cautious about my exams and I will appreciate what I have. I have been crying for so long for the life I lost and at the end you cannot cry forever, there is the next day and it is up to me how to live it. Something like that, I just dread another period of freaking out caused by fear almost as much as I dread bc. Cherry
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Hi Cherry-sw. I hear you. Like you, I read old posts and threads on this board and gradually realized there was much more to BC than treatment plan and it's all over and you go back to your regularly scheduled program. A common theme that health care professionals tell us is that we must avoid the internet. That's easier said than done for some of us. Many of us would rather be informed than surprised. It's a delicate balance. Everyone gets through their treatment plan in their own way. There are so many changes. I am not the same person that I used to be that is for sure. I am infinitely more patient and it takes a lot to get me rattled. I am inspired by everyone who is further along and living their new life. Anyway, we'll keep on and lift each other up along the way.0
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Yes, we do lift up each other.
I count all of you in this group as a blessing. I keep you in my prayers.
I am so happy to have another Christmas with my husband and my family.
Vicky
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Suburbs, you couldn't say it better, I would rather be informed than surprised, this what I have been missing, these exactly words every time they told me to stay away from the Internet and I kept telling them knowledge is the power. They did figure it out though and are know very open with me, by them I mean the doctors, there is nothing more they can tell me and due to the specifics of this disease that terrifies the patients they would rather prefer we would trust them blindly. I will not be able to stay away from the internet even though I do not google all the time the way I did in the beginning. After all, if not for my googling I had never found this community and I do not know how I had done mentally in this case. I am very grateful to each and one who ever found time to talk to me, to send a couple of cheering words, you will be always in my heart Cherry
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I agree. I think both my once have like that I can carry on a conversation with them and ask questions. I feel like I’m part of the team in my decisio
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Fluff - stay in faith and I pray for good results at your upcoming biopsy.
Suburbs, congrats on the last Herceptin! Each day you will find more peace in your new normal. I do agree not getting monitored as often is scary but I'm working really hard at turning the future over to God and not worrying about what might be. I want to focus on the joy I find in each new day. While I can't control whether cancer will come back, I am learning to control what I put into my body and managing stress better. I strongly believe that my poor diet and high level of stress caused my cancer. Maybe not but I am putting faith in the new behaviors I have adopted since diagnosis.
Hapb - glad to hear your heart has improved since you stopped Herceptin although you are at a crossroads on what to do next. I pray you come to a decision that gives you peace.
Cherry, I think you have made great progress since going on the anti-depressants. While the worry and fear is always present I can tell you have a more hopeful outlook. I personally think this comes as we move further along on the treatment path. You still have a tough road ahead but I am confident you will get stronger with each passing day! I start each day with reciting my thank you's and the gift of life is at the top of that list. When I focus on the positive it helps to diminish any pain or side effects I may be having.
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Regarding my diet - I like to cook up several batches of veggies for the week which "forces" me to eat them over the bad stuff because I hate to waste food. I just made a big batch of brussel sprouts, pretty boring unless you flavor them up a bit. I saute them in dash of EVOO, 18 year balsamic vinegar, onions, salt and pepper. Yummy! In my old days, I cooked them in butter and with bacon. I find they are more delicious the way I make them now. I also made a batch of green beans, caramelized onions, and mushrooms made in a dash of EVOO with salt and pepper. You can see I put onions in most of what I make; I think they provide a lot of flavor plus I read they are good for cancer patients to eat. I buy fresh herbs like rosemary, dill, basil, thyme and sage and throw those into whatever vegetables I make. I eat sweet potatoes and beets often - I roast those with a drizzle of EVOO, salt, pepper, thyme and rosemary. All of these veggies fill me up so I am less inclined to eat anything else.
Regarding the fasting - I try to eat no later than 7pm and don't eat again until sometimes noon the next day. I sip my warm lemon water and green tea in the morning. This keeps me from thinking about food and I rarely have hunger pains.
I try to not even have one bite of something sweet - it seems once I have a bite I can't control myself and I eat nothing but sweets for the rest of that day.
Kim Cee, it is a daily battle trying to eat right. I am 56 and my junk food and sweet treat habits are still right at the surface. I start each day with good intentions to eat all healthy foods but I don't always make it. If I can eat good most of the time i.e. 80% then I am in a much better place than I was before diagnosis when I ate terrible 100% of the time. You can do it too, one day at a time. We can do it together!
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Hapb I'm sorry your tests weren't better. This whole cancer business with the drugs we are taking is just unreal. They fix one thing but damage another. You are in my daily prayers that your heart is strong and your medical team can keep it strong to get you to the other side of this ordeal. Hang in there, hugs
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Suburbs and Coach Vicky - in hindsite - since I'm taking what you two did - I'll be going in for Round #2 next week - but Hindsite - what can you tell me? Anything specific you can give me advice On? Thanks
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Deni1661 - I am also trying to eat better. I tried to bake Kale chips the other day. burnt them, I couldn't tell what they were suppose to look like - but i tried again and turned out pretty good! I like to bake zucchini and squash, sweet potatoes and now Kale chips with EEVO and pepper - I dislike salt. Especially since I gargle the Baking Soda and Salt all day long. Just pepper. Its Baby Steps for me.
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Hi ladies,
It's been a couple weeks since I posted. I have tried to go back and read the last six pages
.I see there are some ladies here talking about treatment and some symptoms. The red face was new for me to read about, but there are a few of you who had that - interesting! I didn't have that.
I do agree that you sound so much better, Cherry - you are doing so well. I also appreciate you reaching out to me via pm to show support - thank you xoxo.
Hapb, I am sorry all this has been so so difficult on you. Am I to understand that your heart is starting to recover? Did you end up starting another AI? I saw a diet link you posted and will check that out.
So last time I was here I was nervous about upper thoracic aching that started up about 3 weeks ago. I was highly stressed as they sent me for a bone scan. I had it this week and it is clear. This is great news, but here is a question and I'm wondering if anyone has an answer...last scan I had was in July. At that time they noted slight uptake in my right shoulder, lower left lumbar, manubrium (sternum), mid cervical spine. These were all new areas of uptake from previous scans in 2016. The only one area that showed up on all three scans was my right MTP Joint which is the big toe area. I know I'm arthritic there. So here's the question. This scan this week did not show any of those newer areas of uptake from July?! The only one that showed was the mtp joint again. So what could happen such that areas show uptake one scan, and then not in the next scan? Is this possible??? I didn't know there could be transient changes.
I can't figure why I have this pain. Can Letrazole cause actual bone pain? I have knee pain and stiffness, but didn't think Letrazole affects bone. Thought it was just joints.
Have a lovely evening, all!
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You asked and here is what I offer:
Find a way to calm yourself ... prayer, meditation, yoga ... something.
Walk at least 6 days a week. Especially walk your day of treatment.
Drink water ... lots of it.
Eat well and if you are fat, take off the weight.
Stay positive ... For me, I was given a second chance at life.
It is YOUR body, you decide. No one does anything to me that I am not comfortable with. And (as I have written before) they better wash their hands before touching me.
Go easy on yourself. It is really OK if your floors need cleaning. But do something everyday to keep things up. I found if my environment was clutter and un-kept, I became unsettled.
Become the person you always wanted to be and can be now. I hated hearing I had cancer ... especially breast cancer. But I though when handed a sh*t sandwich, make the best of it! Having cancer opened a new way of being for me. I am in a better place than I have ever been in.
If you need something to help you thru this, get it. However, don't accept ANYONE telling you that your are depressed unless they are qualified to make that diagnosis. You may find yourself in shock (I was) or have anxiety. Different mental states require different drugs.
There is a great book by John Piper titles "Don't Waste Your Cancer." Please read it.
I promise, life will get better. It takes time. Again, go easy on you.
Best wishes on your journey. Let me know if there is anything else I can do.
Now, I am off to get ready for a British Christmas party hosted annually by two of our Brit friends. I am going to drink wine and if DH brings cigars, take some puffs. I am wearing semi tight jeans and a cleavage showing top. I will be the only woman there over 50 with perky t's!
Vicky
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LOL CoachVicky. Have fun!
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PoseyGirl, what a relief, this is good news indeed. I do not know anything about why one scan shows more than the other, I only had one, I know that arthritis can be seen on bone scan. I am just glad it came back clean. I have been told that psychical tension can cause thorasic spine to lock and it can be painful. You can go to the PT, mine helped me a lot and also you can google exercises that open thoracic spine. Cherry
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Thank you everybody for noticing that I am doing better, I guess I am and I really want to stay in this state of mind because the alternative of losing my mind is not an option, that feeling ghat you lost everything and do not know how to go on, that was awful, if anti-depressives fixed my problems, I SM very grateful to anyone who both invented and suggested those to me, I did really need those.
deni1661, I know very few people who eat more onions than I do, raw and baked and cooked. We always ate lots of veggies, I know I have to cut on sugar and I already eliminated alcohol, and frankly speaking I miss it, but I do not know how it is possible to eat more veggetables than we already do. And I mentioned about us having turmeric in all our soups and stews. If plant diet is so important could anyone please explain to me how I got this bc? I eat veggetarian borsch every week when it is cold outside. I was not that caucious about buying organic groceries but now I am, it almost doubled our food expences, but I hope this will make s difference.Cherry
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Love it Hap!!! Thanks for sharing that xo
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Thanks CoachVicky - I appreciate your wisdom and advice. I have found I'm in a much better place since I got my first round of Chemo out of the way. The anticipation was killing me. My Dog Truman - I Thank God for him - I rescued him from the shelter last year - He was a mess, 11 years old with diarrhea and a mouth full of rotten teeth. Got him all fixed up with the help of a rescue group and he is the best! He gets me out of bed everyday and Makes me go on walks back in our beautiful woods.
I am trying to meditate. Hard to settle my mind. But I shall try.
CVicky - You are going to Rock that party!
Thanks for the Grinch photo HapB! sending you (( hugs ))
Poseygirl - i havn't started anti-estrogen blockers yet = I dread that day. I do know there is a site on here for Letrazole (Femara) users. I'm not going to look until I have to start on the blockers.
KB870 - congrats on finishing your treatments!
Take care all!
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rljes, Truman is stinking cute, sometimes I wish I had a dog to walk out because I have not been walking as I should while on EC. Having a cat does not help much, her favorite passtime is sleeping so most of the time we just lay next to each other.
HapB, I know, my question was retorical, I ask it myself so many times what could have caused this bc at the age of 44 but I cannot blame it on bad eating habits, I usually have four kind of onions and four kind of cabbage in my fridge. It is just so unfair
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I love the Grinch cartoon and I also love your pic, rljes...
Thanks, Cherry and Hapb...I'm happy to have a clear bone scan, but I'm still worried about the upper back pain. I had my blood work done a few weeks ago as I've had chills ongoing (not sure if that's related to the Letrazole or not) and I am mildly anemic. So now I'm paranoid about Myeloma. I just have got myself worked up over the past month because it's been a series of things. I am trying to calm down...
Yes, it's hard to know why any of us get cancer. I will say that my entire adult life I've had very dense and very fibrocystic breasts. I have always been worried and super vigilant about the right side in particular. And boom - I got cancer; my inner voice was right that it could come to me. In spite of all my other lifestyle flaws, I believe that this was the biggest independent factor for whatever reason. There are many, many people much unhealthier than I who haven't been touched by any such disease. So while I do know that the environment and diet and alcohol play a role, etc., there is much still to be known. Each of us has different immune systems and all it takes is for a few cells to get carried away and not stopped by our systems and off they go.
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Love the grinch cartoon. Totally stressed and I am certain I will be until the diagnosis is back and I can develope a plan. Not looking forward to tomorrow at all.
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fluff - hang in there
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Fluffqueen, thinking of you and hoping you will be surprised with a better result than you expect
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fluffqueen, positive thoughts your way
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PoseyGirl, the chances of you having a second primary cancer are very slim, and even if bc would appear in spinal marrow, your blood work would had shown it, this what I have been told. If there was any indication the had done further testing. I know I am repeating myself but please ask a PT to take a look at your back, they usually can see whether is mechanical or ichemic and can come up with the suggestions.
I blame myself for some choices in my lifestyle too, but if somebody would ask me I would say the same, with my fibrocystic breasts I had four-five times higher risk to develop bc. Still the majority of women with this kind of breasts and even those who are tested bc genes positive are not developing any bc, so if if my lifestyle had contributed I have no idea.
Cherry
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coach Vicky, deni1661, and cherry-sw, thank for the words of encouragement.
Rjles, great pic with your puppy. You asked about hindsite. What would have been different about chemo if I knew then what I know now. Well, honestly, I think chemo would have been more difficult if I had a clear understanding of what was to come. I was informed about the steps and researched a fair amount, but did not realize how tough each step would be. If you are taking walks, and eating, then there is not much I can add. You are doing pretty well. Hold onto that thought and seek an anti-depressant if you feel down and don't wait. Diet changes are not easy when you feel rotten. I ate a lot of mint ice cream which was the only thing I could taste. Eat what you can.
Poseygirl, since starting Arimidex, I have daily pains, some random and some recurring. I hear you.
Fluff, thinking of you and hoping for good results.
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rljes.... Truman is so cute! I think the best dog buddies are the rescue ones.
To ALL ... Have a wonderful week ahead. Best wishes those taking treatments.
Fluff, keeping you in my prayers.
Vicky
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rljes, Truman looks so sweet. Made me smile.
Hapb Thanks for the pic!
Fluff, Thinking of you......
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Hi Everyone, I am very new at this I am not sure if I am doing this right. I am triple negative as well. I just had my 2nd chemo on 12/14/17. My hair was coming out like crazy so, my daughter who owns a grooming salon, also has professional sheers just for her husband as he has somewhat of a bald head and she keeps him trimmed up. So last night I had her shave my head, because every time I got out of the shower I had hair all over me I felt I was shedding more than my 4 dogs. Seeing myself without hair was very upsetting I felt like one of the 3 stooges. Today I did go to work and I am wearing my new wig. I am adjusting to it. Thank goodness it is cold outside as it is helping me to adjust to it as it is keeping my head warm LOL I must say though it took the nurses a long time to hit my port this time. They had to stick me 2 times and they seemed to think there was a small clot so I had to get medicine to dissolve it. So last time I was there from 8 am to 2 pm this time I was there from 8 am and I didn't get home until 5:15 pm. Which I live only about 20 min away from the hospital. Has anyone else had problems with their ports. Is this normal?
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ventureval - not that we don't welcome you, but all of us on this particular thread are triple positives - meaning we are ER+, PR+ and Her2+. If you are triple negative your treatment is likely a different regimen than many of us had, although some of the drugs may be the same for some of us. Because your hormonal receptors and Her2 status are not the same as ours your treatment may be comprised of different recommendations in addition to different chemo. I would recommend two things - join up with a group of folks that are at the same time point of chemo as you - probably the December 2017 group - I will link it below, and also the triple negative group. That way those who share your diagnosis can also share their tips, tricks, thoughts, and offer support. I hope you are doing well, and if you have any questions or concerns about breast cancer and treatment in general I am sure all of us on this thread will help in any way, but I want to make sure you are in touch with others with the same diagnosis as you.
December 2017 chemo group:
https://community.breastcancer.org/forum/69/topics/860443?page=2#post_5110154
Triple Negative thread:
https://community.breastcancer.org/forum/72/topics/752075?page=1016#idx_30451
This link has all the triple negative threads:
https://community.breastcancer.org/forum/72
Sounds like your hair is falling out at the typical timeline - glad you had your wig at the ready! As far as your port issues - this happens from time to time. My port was a very small one and there were a few times the oncology nurses struggled a bit to get the needle in. Are you using EMLA cream (a lidocaine numbing cream) ahead of time to help with any discomfort from the port access? If you don't have any, your oncologist can write you a prescription for it. I put a blob on the port about 30-60 mins before leaving home, then covered it with Press and Seal plastic wrap to keep it in place. Some centers also use a freezing spray that numbs. Clots are somewhat common, and the use of a clearing agent usually does the trick. I have a friend who was also TN and her port was a bit problematic - she was asked to lay back and put her arm above her head and this seemed to help - I have seen others lean over and swing their arms prior to the port access and this helps also. Because a number of us on this thread had as many as four drugs, plus labs and pre-meds, infused each time we also had long days at our respective centers - we all sympathize!
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ventureval, you are welcome to hang here with us any time but as SpecialK pointed out TN threads will be of use to you too. Hang in there, hair was one of the most traumatic parts.
I had my second EC today, this time with Emend, Aloxi, steroids and a substance called mekhlozinhydroklorid. I ate Chinese chicken soup with tomatoes that did not taste anything, some cake chips and drunk tea with lemon and ginger. Later I thaw raspberries and ate them while watching a movie. I am in bed and I am nauseaus, they told me the meds would help but I am more nauseaus than I was before on my anti-nausea pre-med light version. They said if that would not stop I would have to come for Cyprexa infusions. Any advice on how to get rid of nausea? Could raspberry cause it? I ate a lot, they were half frozen and tasted salty, I know) I don’t want to ho to the hospital again but this EC is kicking my butt, pardon my French. I was ok when I came home ans cooked dinner but now I cannot decide whether I should try to eat a little, and whether it may help or if it would just make me to threw up. Sorry, it is gross
Cherry
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