TRIPLE POSITIVE GROUP
Comments
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Hi cherry-sw. It does take a few weeks for Prozac or any similar anti-depressant to start working. I had Valium and Ativan for that time in between. I did not have to take either daily. Your oncologist may be able to prescribe something for you. As for side effects, I have had none other than the crying fits and melt downs ended. I feel more even now. Hope you get some relief
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LTWJ- Acupuncture really helped my neuropathy from chemo, might be something to try? Congrats on being done!
SpecialK- thanks for the diet details. I am mostly following that but the one I am conflicted about is dairy. On these AI's I know bone health is already a concern. And supplements don't do as much as dietary dairy from what I've been reading. But like you said, low calorie and lots of exercise isn't doing much. I also didn't cut out all gluten, but cut out all flour, so that ends up being a lot of it but maybe I need to take it a step further.
There are two goals for diet, one is reducing recurrence, the other that I am really hoping is reducing side-effects from the Aromasin. I am not quite to a year on it and the joint pain seems to be worsening and spreading to new parts of my body. So I am really focusing on eliminating all inflammation I can hoping that benefits both. Also I am sure any extra pounds don't help the joints either.
I love my LaVanilla deodorant. I also love the Malin and Goetz brand (is also more globally available.) They are both a little more expensive but they last forever. I tried pit paste but just couldn't make myself apply it with my hand every day, although it did seem to really work.
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Thank you everybody, I will head to my Taxol infusion today and will talk to the doctor there and then to the psychiatrist on Wednesday. It is just I cannot take to me any good arguments they are trying to tell me and I think all the time that I did some mistakes that could possibly have caused my bc and that my family does not deserve to go through all this and that they probably be better off without me because I feel so broken and shattered that nothing ever will be able to fix it. It must be caused by chemo or something. I am afraid whether something is happening to my brain and I will go insane and have to be one of those in mental facility. What if anti-depressive will not be able to help me?
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HapB. ย ย It didn't get on my clothes at all with the roll on bottle, I applied it right after my shower and made sure it was dry before I dressed.ย I never used it while wearing black colored clothing though.ย Initially I did apply the MoM with cotton balls and yes...it was a mess.ย My plan was to eliminate the aluminum and I did it for a while and then stopped because it did take a minute for it to dry.ย You can buy it from (peoples pharmacy) but it is 6.50 for 2 oz. YIKES! (I couldn't find it at Walmart website). ย ย I bought refillable deodorant bottles and did it myself, it lasted forever and ever.ย It worked perfectly, no BO, no skin irritation and I felt it was safer than regular antiperspirant.
ย
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Cherry,
Everyone is NOT better off without you. Antidepressants usually work if you find the right ones (you might get it right on the first try, but if not, try another). You are NOT alone in your feelings. I am 15 months from diagnosis and still battle daily. But I was paddling for dragon boat with 20 other women and most of them are doing really well emotionally. They say that it will get better; I believe this for you. I have to try and believe this for me. Until then, surround yourself with support in every way you can. And here are some lyrics to remember from REM:
When your day is long
And the night, the night is yours alone
When you're sure you've had enough
Of this life, well hang on
Don't let yourself go
'Cause everybody cries
And everybody hurts sometimes
Sometimes everything is wrong
Now it's time to sing along
When your day is night alone (Hold on, hold on)
If you feel like letting go (Hold on)
If you think you've had too much
Of this life, well hang on
Everybody hurts
Take comfort in your friends
Everybody hurts
Don't throw your hand, oh noCherry, we need to hang on. You and me and anyone who's crying or hurting. Sorry if it sounds too sloshy, but I am here, hearing you.
On the topic of calcium...try fortified almond milk - it's filled with calcium. Kale, broccoli, other foods too. The question of calcium is one I've had, but I just have to get better and drinking the almond milk. And from what I understand, lower fat dairy in smaller amounts is just fine. So drink a cup of low fat milk a day if you don't like almond milk; I truly believe it's ok (from what I've read). I'm going to work on the list and attach here based on what I'm reading and what you're all saying...just our food for thought list. If you have something to add, let me know.
Hang on, Cherry - don't throw your hand (as per above lyrics). I will try not to as well - we'll do it together. Talk to your doctor and get on the meds - just promise us that as a start.
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Great post poseygirl, we must all hang on and find a way out of the dark. This group helps immensely not only with the unconditional support but all he suggestions from experience too.
Like Hapb, I find prayer works for me and also meditating. Every morning I thank God for the many blessings I do have and ask for help with my struggles. My grateful list is always bigger than my prayer list so that keeps me positive most days. Some days something little sets me off so I'm working on that - it's mostly comments that people make
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I would encourage any of you with the need for anti-depressants or longer term anti-anxiety medication to get these from doctors that specialize in this - I think it can be a mistake to ask your oncologist for these medications, with the exception of Ativan for anti-nausea during chemo. Some oncologists and some larger centers can also get you a referral for a therapist that specializes in serious illness, and they have a better understanding of the psychological challenges that face many cancer patients.
I participated in a study right after chemo, while still on Herceptin. It is linked below. I found it immensely helpful and a lot of the tenets are available online. The study was based on the book Full Catastrophe Living by Jon Kabat-Zinn, and was a quantified study (blood and saliva samples throughout) of how the stress hormone cortisol impacts breast cancer patients.
https://clinicaltrials.gov/ct2/show/NCT01177124
On the subject of dairy - I would also pay attention to the grams of sugar - one cup of 2% milk has 12g of sugar, same amount of unsweetened almond milk has none.
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Special K is right that a psychiatrist can be especially helpful with prescribing anti-depressants. One of my sons with autism suffers from depression and anxiety, and it took several tries before we found the right cocktail of drugs to help him out. In fact, he had paradoxical responses to all sorts of meds, including Prozac. (Prozac made him manic.) Thankfully, he sees a psychiatrist who focuses specifically on treating young people with special needs, and his doctor had all sorts of treatment ideas.
As with anything, keep a journal of symptoms and side effects after starting an anti-depressant. If your med is making you feel worse, you need to call your doc and get on something that works for you. Best wishes to all who are struggling, either mentally or physically, with treatment and recovering from treatment.
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Cherry I did do chemo tho it was targeted treatment called Kadcyla in a clinical trial at Johns Hopkins. With her2+ almost everyone has to do chemo. Did it for a year.
I have been on Effexor for years. I have battled depression my whole life. I will be on it forever. In my case it is a chemical imbalance in my brain. Yours may be more situational, I don't know. They say to give it a month or so but some people respond quickly. I did.
I see a psychiatrist every 4 mos or so for medication management
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my oncologist would not prescribe antidepressants and Suggested I should go to my GP for this discussion.But yes, I agree a psychiatrist or other specialist would be best.
I was not dealing with depression before my diagnosis (for Hapb's question).
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According to SEER data, roughly 40% of Americans will develop cancer in their lifetime. Not sure you would be able to isolate stress or anxiety as a direct cause, absent the many other factors that may contribute to a diagnosis of cancer. I don't doubt that stress, anxiety, and trauma, can affect the immune system, but I think it is difficult to quantify how much stress people feel in their life circumstances. Something that might cause one person stress, another may handle with no physical impact.
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what do you guys eat for snacks
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thanks hapB. can you ladies tell me again why dairy is not good for er (+) women?
SpecialK, i think you have eliminated peanuts in your diet.can you tell me why?
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kae - dairy is from a lactating animal, so an inherently estrogenic food. It also contains proteins (casein) and sugars that can cause inflammation. Some dairy is produced from cows that have been supplemented with hormones to cause them to produce excess milk. I eliminated peanuts because they areamong the foods that people are most commonly allergic to, thus potentially inflammatory. Peanuts contain lectins that can cause digestive distress.
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Thanks for the post about seeing a specialist Special K. I think it is critical to get the help we want and sometime the Oncology Team is not the expert.
My Primary Care recommended a great Psychiatrist who (of course) knew the difference in PTSD and depression and could make the right diagnosis.
Guess what? I decided to get some "skin" nipples with the little extra skin I have on each breast, and then do the 3D tattooing. I just wanted something to touch again.
So I preregistered at the hospital for the upcoming reconstruction. The nurse questioned me about my medications. She said I was the only cancer patient she had preregistered that was not on anti depressants and she had never heard of PTSD as a condition for breast cancer patients.
Vicky
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i try to drink non fat organic milk..would that make a difference ladies? is almond milk better and why? also i read goat cheese is ok?thanks i am learning a lot. my food choices is limited due to gastro issues
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Thank you all, I am back from my infusion and had a chance to talk to the nurse and the doctor there. Since I have experienced the bad days when I was actually feeling better physically my nurse believes it has to do with the cortisone I get before the infusion but she also strongly advised to see the psychiatrist and deal with the underlying depression or anxiety, PTSD. They contacted the psychiatric department at the clinic and wanted me to see someone sooner, they seemed to be very concerned primarily because they were worried that it will affect my treatment in a bad way. I told them that I will be fine until Wednesday and will go with oxazepam if I need to. I will ask them to make an evaluation to make an diagnosis and then I will go along with my recommendation. The doctor in the clinic came back trying to tell me how Herceptin change the situation for those who are Her2 and if it would not work they have a lot of other targeted treatments and started to name them and I was like laying down there thinking, right it could only get better from here. He told about scans and everything and I just couldn't do it anymore, couldn't ask him anymore, I already know how it works and it was so hard to be reminded that they cannot say to me anything more encouraging about my situation.
PoseyGirl, thank you for reminding. I do remember this song, it was all over MTV in the beginning of 90-ies. It does not sound sloshy at all. I am just afraid of losing myself in all this. I look terrible, I feel terrible and I cry a lot which does no contribute to the looking better part. And then I look at my husband, how good-looking he is, knock on wood, well maybe not to everybody but to me he is, I also fell for his look even before we started dating, when I look at him I feel that it is just like I am not worth anything anymore.That they deserve to have it better. And I told him this today when he came from work to pick me for my infusion and he told me that he instead was looking at their accountant lady at work, who got her throat cancer a few years ago and did it all alone in the beginning. She was around 60, living alone, had a grown up son and I remember visiting my husband at work and how she just always came to me for a hug because there were a number of new young healthy women and I felt that she wanted to feel appreciated by someone who she knew longer than they did. Her eyes were like an animal's that just got hurt. My husband told me that she was stumbling her way in to work during chemo just because she did not wanted to be at home alone and how she shared her diagnosis with people and there was a woman who she did not knew very well, just an acquaintance and how this lady who lived in another country offered her to come and stay with her through chemo and she did. They became great friends and as a thank you she took this lady for the trip later. And my husband told me that he was looking at this accountant, how happy she was telling the younger women how she now was choosing between two potential boyfriends. Well I told him that potential boyfriend part was not so relevant for me anyhow. I like her a lot, it did not help me much but I am happy for her and it is another remind of how things do turn better after an ordeal like this. It is just such a long way to go.
I cannot imagine what I would do without this forum. It has been an amazing source of support.
Hugs,
Cherry
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I am so proud of you Cherry! Your post reads strong!
Hap, I think it is projection ... medical people think they would be depressed if they had cancer and they can't think of any thing else like anxiety, PTSD, or even how fatigue zaps one's soul.
Vicky
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Once again, thank you all. You are my first choice of people to share it with and I hardly know you and probably never will meet in person. When this disease brings the best out of people and it is so badly needed by someone who is at the lowest, well maybe not right now but where I was yesterday, I cannot even describe how important this support may be for someone.
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SpecialK, you are like this wizard who always pulls a right card from the pocket. It was interesting to read about this study but I am not familiar with the book and the study did not tell much about the results. The steroid I get is called cortisone here and you participated in the study that was focused how cortisol was affecting the life of bc patients. The nerd I am I had to google the difference between cortisone and cortisol. This is what I got:
Cortisol can in crease blood sugar and cortisone has the ability to reduce things that cause inflammatory response. If you need more information go to this website. Difference Between Cortisone and Cortisol (Hydrocortisone)
Another one:
To know the action of cortisol, we will understand the mechanism of stress.
Stress is any change in the external environment of the organism that it tries to adapt to.
So our body tries to respond to this change through our Autonomic nervous system and Hypothalamo pituitary axis.
The fright and flight mechanism is activated.
Imagine a situation where you see a tiger in front of you. The obvious response is to sprint in the opposite direction. Thinking of what your body needs right now
- Energy that is channelized to the musculoskeletal system.
- To stop the unnecessary wastage of it in other organs such as the digestive system.
The cortisol comes to action here.
Basically, it causes hyperglycemia by mobilizing the stored glucose or by synthesis of it by the breakdown of proteins and amino acids.
Conversely it also converts excess glucose to glycogen by striking a balance.
It maintains the electrolyte imbalance and maintains the ph of the blood.
It basically helps you prepare for the stressor.
The situation might not be that severe in case of addisons. But it can go down to dangerous levels in case of acute stress. It is termed addisonian crisis. Managing the condition is extremely crucial.
There is also some info on cortisone. Nothing about the addiction to it or it causing some dependence but still if used over a period of long time. And they have added more cortisone since I had an allergic reaction during the second Taxol.
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SpecialK, kae, Hap, Regarding the peanuts and other nuts and even some dried fruits like figs. I once stumbled on Sweden's national directives for cancer treatment, a very long document where one of the bc specialists I first met when I was diagnosed was mentioned as one of the board member. Peanuts as well as other nuts and dried fruits coming from warm rainy climate countries could be a potential cause of liver cancer because they were containing aflatoxin a product of a certain mold. basically all the nuts we eat were on this list. it was discouraging and I decided to decrease my intake of nuts.
I wonder whether the food and other stuff intake restrictions are contributing to the depression. What before could easily be achieved by a couple, maybe more on a Friday, glasses of wine while cooking a dinner and listening to music, what a relax it used to be on a Friday night or on vacation, it is now gone. While stressed I could take a very light cigarette, I know bad habit, but I had a lot of stress before, now the smoking is gone of course. Running a couple of miles a few or at least a couple of times a week, feeling good and strong, happy of endorfines, then coming home at telling myself that I am worth a little brie with fig jam, it could take away any anxiety and I was feeling great. We visited NYC this spring and i decided that I have to run Shuman running track in Central Park and I power walked there from Midtown, everybody were just running around me, it was like a competition. I run the truck once and then was just looking at it and thought well how often do I get to be here and run it again. While running I heard my youngest calling me, my husband and she rented two bikes and were passing by me. I was so happy. Two months after that I was diagnosed. And it feels like, will I ever feel like this again, will I ever be able to feel any happiness? I want to live healthy, I have quit alcohol and bad food, and will have to find another treats, do not have any idea what they would be. But now I feel that I have quit everything in my life and there is chemo, no hair and a diagnosis that got me of my feet and left me as a cornered animal.
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- I snack on raw veggies and hummus or pepitas (pumpkin seeds). We have a big garden so I've been eating lots of cherry tomatoes and zucchini. I drink unsweetened almond milk and find it just as good or better than regular milk.
I don't know if my food choices are going to prevent recurrence but they work well for maintaining my weight and avoiding gut problems
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Cherry I'm so glad you talked to your MO and they got you connected with the right resources. It's so important for your physical well being to get your mind on a positive track. I believe there is a strong mind-body connection and we need to find balance. Very hard to do with a HER2 diagnosis. This group is my life line....I find comfort knowing we're going through this together. You are much stronger than you realize and you will beat this cancer monster.
I found your correlation to changes in diet and depression interesting. I too used to de-stress with a few glasses of wine and comfort food (all the unhealthy stuff). I gave up all the goodies so that's part of my struggle, I don't have a "quick fix" anymore. What I find helpful when I'm feeling stressed is I go out to my car at work and meditate for 10 minutes. I go for a long walk and enjoy nature when I get home and that makes me feel better too. I recite all the things I'm grateful for - that helps lift me up especially when I thank God for my children, grandchildren, husband, friends and all the cancer warriors in this group!
I believe you will run again and you will be able to do all the things you love to do. Chemo will end, the surgeries will be done and you will move on. It takes time and I'm finding you need patience too, but it will come. Never give up!
Hugs to you ๐0 -
Coach Vicky, you are my inspiration! I am scheduled to get the 3D tattoo also but wasn't sure I really "needed" one. But my PS said it would go a long way in putting the ordeal of cancer in the past i.e. I wouldn't be reminded every time I saw my bullseye breast. Your comment gave me the last nudge I needed to proceed ๐
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CoachVicky, I'd ask for a photo of your new nipples, but that just sounds weird lol. It sounds like you will like the results!
Cherry, will pm you back
SpecialK, have you read the studies about Paclitaxel and the link to metastasis? Have you ever talked to the medical establishment about this? Someone in my local FB group posted a link. I've heard about this, but just never wanted to know more
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Well, it's not great. For several years now, they've been looking at the idea that while Paclitaxel shrinks tumours, it can also lead to sending cells out into the system and creating ripe conditions for metastasis. They keep giving it, though, because overall it does more good than bad, I guess. They have nothing yet to administer with Taxol to mitigate this effect, but may be working on something. I honestly can't read any more of this stuff...it's too much
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coachvicky - Please keep us posted on your satisfaction with "skin nipples". My biggest concern is how obvious they'll be under clothing. The 3D tattoos are nice, but I'm just not sure it's enough for me.
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Thanks, Hapb, I will check it out...
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PoseyGirl, I think I saw this article too, is it possible to post the link here? What about adjuvant paclitaxel that is given after surgery and the tumor is removed?
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Deni1661, this group is my lifeline too. Yesterday before my infusion one of my best friend has contacted me on FB for the first time since the beginning of August. She lives in another country, I do not expect much, but this time I gave her a piece of my mind. I did not shre it with so many people but some people I chose for a reason and then I am told that she has been thinking of me all the time. Well, how hard is it to remind about it to me every day? She was sorry and I was sorry too. And her mom is twice bc survivor, the last time was a couple of years ago, she should have known better.
I was still thinking before that I balanced my food intake. We ate a lot of vegetables, all types of cabbage, cauliflower, broccoli, cavolo nero. Zucchini soup, borsch with a lot of beets. In winter I had a pot of borsch in my fridge almost every week. Raw onion, salads, spinage, anything, still got it.
As I have mentioned I am reading this thread from the beginning when I have time and feel for it. Some women are leaving their credentials, they can be seen in FB living their lives, travelling and I find it enormously inspiring. I know it is creepy, at least what SpecialK may think of it, but I believe if they leave it here and have an open profile on FB they do not mind for me to see how they are doing.
And I wonder if a couple of squares of dark chocolate with sea salt can harm that much, I know it is sugar but I am so tired of apples and pears. I love those but chocolate is chocolate, I love it.
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