Crying, scared, blind-sided 50 year old.
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That’s exactly how it goes for me, though I am only getting flushes at this point. I still laugh at my EMLA + spray overkill 😂.
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hello sweetie I was diagnosed at 42 found my lump also in shower. We were planning our 2nd marriages at the time when I had prayed for this man. Things moved pretty fast diagnosed with IDC stags2 0/3 nodes 3mo chemo before and after L mast with reconstruction but body rejected the expanded implant as a foreign object. But I wear a prosthesis in my bras and bathing suits cannot tell at all. Praise God this yr Imma a 27yr Survivor with faith Hope and family friends and lots of Positive thoughts only after those first plenty tears. Decided to fight the good fight for my life. Hold on. Got married Thank God after chemo treatment and then 7wks rads and 5yrs on tamoxifen. You can do this. Also 27th wedding anniversary this yr. Hold on.
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Good morning group!
I just realized I forgot to update you on my doctor's visit. Met with my oncologist Monday. She said my incisions looked fine, just some bruising where I banged my thumbnail into it. Today it looks even better. The one on my neck can hardly even be seen and the larger chest one looks great. I still have the purple surgical tape on it. I think it's not flaking off as expected because they put a second layer on when the first one accidentally got stuck to my hospital gown. But I will keep it there to protect the site when I bathe.
Okay, so regarding my doctor's visit. My doctor was eager to discuss my staging, etc with me but I was just too scared to allow it. It seems like since I found the lump in my breast, people have been telling me not to worry (it's probably not cancer because there's pain, it's probably not triple negative because that's uncommon, etc) and you know the rest. So I've adapted really well not knowing what my staging is and would like to continue with my "ignorance is bliss" strategy. My doctor was irritated, as you'd expect, because she is suppose to give full disclosure to her patients. But I explained to her that telling me my staging would serve no useful purpose. I don't have any children I need to look out for and my husband supports me either way. So it was a bit awkward but here's how the conversation went...
I said something like "who would want to know that they are stage IV and have a 12% survival rate of 5 years?" and her response was "but what if it is good news?". I responded by saying something like "so it's IIIC instead of IV" and she was silent. I was too scared to hear anything more and she stopped pressing. So I don't know my stage except that it doesn't appear to be stage IV. I'm not sure what she considers to be good news and I don't really care to know at this point. It's been a terrifying couple months for me and I was diagnosed with chronic anxiety and depression BEFORE the cancer scare so I just want to live in my ignorance. I know it's not normal and may not even be mentally healthy but it's how I'm dealing with it at this point in time. It does appear that all my tests...brain, bone, torso, etc came back negative. Sorry I don't have more to share. I'm just too messed up mentally to cope right now with anything but a fantasy that my 6+ cm triple negative tumor with enlarged lymph nodes is stage 1.
My doctor did approve the pain cream for the chemotherapy. I asked about the spray but I don't think they use it. She said something about it's affect on the skin. Can't remember exactly. My chemo starts on Tuesday and will be weekly for 12 weeks and then every 3 weeks the following 12 weeks. I'm getting 3 hours of chemo weekly and every 3 weeks I get 3 hours of immunotherapy. So it will be 3 hours sessions with 6 hour sessions every 3 weeks. I didn't realize how long chemo took. I always just figured they'd pump something into me over a few minutes and I'd go home. So it sounds pretty boring. I'm hoping I can bring my laptop along and I will just fiddle with that. It will make the time go quicker.
I was informed that although blood could be drawn through my port, my insurance won't allow it at their location. So I will have to get weekly blood draws the old fashioned way at a lab. I'm not too concerned because the place I will be going seems pretty good at reaching my veins. In the past 2 visits there, they've gotten blood on the first attempt. I only ran into problems during the CAT scan and MRI locations. I was told if it does become a problem that I can appeal to my insurance and they might make an exception to allow me to get it drawn from the port. But I need to show a history of difficulty first (I guess the past week doesn't count). I'll just make sure I'm warm and hydrated each time I go.
Sarah_78 Hi Sarah. Thanks for sharing your story. I'm sorry to hear that you lost your friends over such in-sensitivities. Fortunately (or unfortunately) I have no friends so I don't have to worry about losing any lol. I'm not a very social person and since moving to Las Vegas, my support has mostly been through my husband and to a much lessor extent, my parents. But I do have relatives in other states that have been wonderful through all of this. They call and text and some will even be visiting in December. I enjoyed the circle rule you shared with me. It makes a lot of sense. My circles are pretty small but the rule still holds true. It's nice to meet you. Thanks for writing in.
ThreeTree Regarding the covid booster, my oncologist said I should get it. I'm kind of in a pickle though. Early this year I got vaccinated. I knew I was at a higher risk than the general population because I was overweight (okay, obese) and my immune system was shot from chronic stress (I had already gotten Shingles in my late 40s and had a recent infection pop up that my doctor said was stress related. I was all set to get the Pfizer or Moderna vaccine when a relative talked me out of it citing unknown risk of MRNA technology. She recommended the J & J vaccine. So i got that in April only to have her start talking bad about that vaccine as well. Now she is saying not to get a booster. She constantly reads articles about Covid and has sent me box after box of these strange sounding vitamins and herbs that she claims helps fight Covid (I havent taken any). Since getting cancer, she offered to send me Ivermectin but I declined. But I have started taking flaxseed and fish oil supplements along with my multivitamin, D, and B12. Anyway back to the booster. So I am starting chemo on Tuesday, my doctor said I should get a booster, relative says absolutely not. I also have choice of all three as boosters in my area. But with chemo starting so soon, I wonder if it would do more harm than good at this point. I mean, it takes 2 weeks for vaccines to become effective. A booster would be similar. Soonest I could get one is today but then with chemo coming, I'm not sure it would be a good idea to weaken my body. So I'm not sure what to do at this point. The Covid rates in Las Vegas continue to fall so I'm not sure a booster is necessary even. Anyway, just one more thing i need to think about.
I've read all the other responses. Thank you all for sharing your stories, comments, advice, etc. I do have one question that I just thought of. I talked to someone who had cancer decades ago. He said chemo was a painful experience. He likened it to kidney dialysis. Now I'm hoping since none of you have mentioned it, that his chemo differed from what I'm about to experience. Though I have triple negative and maybe they use a more painful medicine that you all have had to endure. He didn't have breast cancer of course, I think he said lymphoma, but I'm hoping I'm not going to be tortured for 3 to 6 hours a session for the next 6 months! If the majority of the pain is just at the beginning when they inject a needle into the port, I can deal with that, even without the cream. But if it's like they are putting fire into my veins for hours on end, I think I'm going to go out a buy a ton of pain medicine to set me up for the appointment.
Anyway, have a good day all of you. Today I'm going shopping for either a wig or head scarf or maybe both. Haven't decided. God bless and keep you.
Rita
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I want to apologize for what I wrote regarding the conversation with my oncologist. I just realized how insensitive it sounded. Everyone of any stage of cancer should have lots of hope because of how far treatment has advanced. I wish the best for you all in your treatments.
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rita,
I’m not going to pretend to understand your decision to follow the ignorance is bliss path but as with any medical treatment, that is certainly your choice. I am a recently retired teacher and a firm believer in knowledge is power so you can understand why this wouldn’t be my choice.
Please follow the science on vaccines, not a relative who is likely not an epidemiologist. mRNA technology is DECADES old! Yes, the mRNA “directions” are modified to work with the particular virus it is targeting, but the technology itself is not new. What does your doctor recommend with respect to a booster shot? He is quite likely a more reliable source than your relatives.
You have a lot on your plate and I hope that you will defer to medical experts when making health decisions particularly since you have other issues. As an aside, when I was told I was stage IV my mo never gave me an expiration date. We simply plotted out a course of treatment and dealt with the ups and downs as they came along. That was ten years ago. Take good care and don’t let fear guide your decisions.
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Hi Rita,
The chemo infusion itself should not be painful at all. Like you said, it’s a mostly boring few hours while the stuff drips into you. I don’t know which drugs you will be getting, but for me, with the AC-T regimen, the only pain I had was muscle and joint aches for the week following the infusions. Sort of felt like I had the flu. Everyone’s experience is different, but I don’t think you need to worry about the chemo infusion itself being painful, especially since you have a port for them to use.
About the COVID booster…. I would strongly suggest you take your doctor’s advice over your relative’s, especially if that relative doesn’t have medical training. The booster won’t weaken your body. But it might make you feel crappy for a day (two days at the most), so it would make sense to get it now, so that you are back to feeling good before the first chemo treatment. And then you will be better protected while your immune system is weakened from the chemo
I think a lot of people want to know all the details of their diagnosis and staging, to feel in control and to be able to make informed decisions about treatment options. But if you are happier or less stressed not knowing, and you trust your oncologist to steer you on the best path and make decisions for you, that’s fine, too. Everyone deals with cancer and the related stress in a different way. I don’t think there is “wrong” way to do cancer!
Emily
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Rita, I understand your not wanting to know. Unless one has had personal experience with crippling anxiety and depression, you can't understand it. With that said, you may feel differently after some rounds of chemo and a few things under your belt. My own experience was that I did want to know and I loved my BS and her way of being with patients. Her attitude took a lot of fear away although don't get me wrong--it terrified me as my mother died of breast cancer when she was 56.
Something that has helped me deal with fear, and this was suggested to me by someone else, was to pray (or whatever one does) for the willingness to be willing. It doesn't mean you do it today, this is just asking for help to be willing.
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Dear Rita,
you deleted your posts and haven't been writing for a while. I hope it means you are too busy with life? You started chemo? You'll see it is not painful at all, for most of us it is just a long infusion day really.
In case you see this, I'd like to point out to the blog post for triple negative ( I am also hormone negative so reading this gave me hope too)
https://community.breastcancer.org/blog/you-can-su...
Hang in there.
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rita,
Regardless of the news you got, many people read and responded to your posts. We hope you’ll let us know how you’re doing. Take care
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I have kept this as one of my favorites so that I can read any updates you care to share. I hope you are OK, Rita.
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Hi guys,
I deleted my last posts because I regretted what I had written regarding the conversation with my doctor and my fears over my diagnosis stage. I didn't want others to read it and feel discouraged or depressed etc. As I've said, I have been diagnosed with chronic anxiety and depression years before this cancer diagnosis. I am not taking anything to treat it and at times, especially since BC, I feel overwhelmed with fear. But I would be happy to update you all on how things have been going. I took antidepressants for a couple weeks and must say that they worked exactly as intended. However, while they stopped the depression, they also resulted in me not being able to feel joy or happiness. My husband describes me as being robotic in my emotions. It was kind of sad because good things would happen and I'd just be blah about it. So I stopped them about 5 days ago. I had headaches for 2-3 days but now I feel fine and have been able to laugh and cry normally. I felt a little depressed for a brief period of time yesterday but most days I feel good and don't feel the need to medicate. I am keeping them on hand in case something changes, however. I have no problem taking them if needed.
Okay, so here's what's been happening lately and there has been some good things. I started chemo on Nov 2. It was a 4 1/2 hour session which included 2 chemo drugs and 1 immunotherapy drug. The whole process wasn't that bad and I just sat and played on my laptop and phone for most of the time. The chemo was on a Tuesday and by Wednesday night I was feeling VERY tired, nauseous and had no appetite. Through all of Thursday and Friday, all I did was nap day and night. I would wake up, eat and drink a little, and then after only an hour or two I would feel very tired and would go right back to bed and sleep hours. I don't think I've ever slept so much in my life. I normally feel perfectly refreshed after 5-6 hours of sleep so it was very unusual for me. By Friday I had lost 5-6 lbs since having chemo on Tuesday. Now this was a problem because my doctor told me I was not to lose more than 10 lbs during my 6 months of treatment. So when my nausea started to lessen on Saturday, I forced myself to eat lots and lots of calorie dense foods. Avocados, dark chocolate, nuts, blueberry biscuits, protein shakes, etc. Well by Monday morning (I had an appointment with the nurse to discuss my recent blood work) I had gained so much back my weight was up 2 lbs! So I don't think weight loss will be a problem for me in the future! If I know how to do one thing well, it's gain weight!
As you might recall that I have very very small veins. I have been often tortured by inexperienced nursing staff trying to get their needles into the tiny veins of my hands and it would result in my blood pressure going through the roof just at the thought of giving blood. However a bit of good news came a few days ago when I learned that my doctor was able to get approval through my insurance to draw blood through my port. That means they can take it the day of my chemo and I don't have to drive to a distant lab and have my veins subjected to more piercings. I am simply overjoyed at this! I have one single good vein in my right arm that they have been accessing over and over and if not there, they have to go to my hands. Not only that, but it allows me to get all my cancer treatments done on a single day during the week so that I can be free from thinking about it for another 6 days.
My most recent blood work seemed fine. My liver enzymes were elevated to like 5x normal but the doctor said this was to be expected after chemo. My white and red blood cell counts were in the normal range. I've been avoiding people since my chemo started because I am concerned about catching something. The doctor said they don't want to discourage cancer patients from living life but I was vaccinated for Covid back in April (the J&J vaccine) and from what I've read, it is probably only 10-15% effective at this point in time, and that was not including chemo treatments. My doctor wanted me to get a booster before chemo started but it was happening at a time when J&J recipients weren't being told to get boosters yet and now that I'm actively receiving chemo, I don't think I should get any vaccination at all. So I've been cooped up for much longer that I am use to. I am fortunate not to be working right now and so it hasn't been a problem. But I'm not sure I can stand 3-6 months of this. I do still take my daily morning 2 mile walks while listening to the bible but it's dark out with few people so it's not exactly fulfilling my need to do something social. I no longer go to church either because of the crowds and few people wearing masks. I do watch the service online but I miss being there in person.
This past Tuesday I received my second chemo treatment. It only lasted a little over 2 hours and consisted of 1 chemo drug (can't remember what it's called). I've felt normal all week except for the occasional and brief nausea episode (usually after eating something) and a bit of fatigue but nothing like last week. I just hope the drugs are working. There was a time that I thought my tumor may have shrunk but then I rechecked and it is the same size as before. I think I read that it takes 3 or more treatments before they can assess whether the chemo is working. I have not yet learned my staging diagnosis, which is only a preliminary one anyway, but I think I will be ready to talk to my doctor about it on Nov 29 when I see her next. Part of me continues to not want to know because it might hinder my optimism. I continue to question why it is even necessary for people to know unless it involves them making decisions about treatment because as far as I can tell, there's a standard treatment for triple negative breast cancers and so I don't see the point, other than to make it easier for my doctor to explain what's about to be done to me. But I could tell she was frustrated with me during our first appointment and so for her sake, rather than my own, I may allow her to tell me whatever she feels is necessary.
My hair has not started to fall out yet. Every time I wash it, I can't help thinking it will be the last time or that it will come off in my hands as I'm washing. My husband jokes that he will scream like a little girl if it comes off in his hands while he rubs my head at night. But it continues to hold steady. I'm taking biotin supplements which I had on hand before my diagnosis. I had planned on taking them after chemo in order to grow back my hair faster but my nurse recommended that I take them during chemo as well. I read initially that your hair falls out between weeks 1 and 2 but then I read elsewhere that it's between weeks 2 and 4 of chemo. While I've told myself it won't matter if/when my hair falls out, I can't help but think I will cry when it starts to happen. I'm certainly not vain and my hair is usually just worn in a ponytail with no style to it whatsoever (gray hairs and all) but losing it is like losing a part of me and that makes me sad. It will also make it difficult to look at myself in the mirror and deny that I have cancer. It's been an effective coping tool of mine to put the whole thing out of my mind as often as possible. But that will be hard to do once my hair goes. I guess the silver lining is that it will most likely grow back and some say thicker than before and even a different color. Maybe I'll turn into a blonde or red head!
I guess that's it for now. Hope you all are doing well with your treatments and with life in general. Have a good day!
Rita
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Hi Rita - Nice to hear how your are doing and I think a lot of us really appreciate your update. Sounds like things are moving along and that you are in fairly good spirits. That's nice to see.
I lost a good 35 lbs during chemo and none of the medical people seemed to care at all, one way or the other. I know they don't want people to become totally anorexic and 90lbs or something, but I never heard that you couldn't lose some weight during chemo. Many do.
Boy can I relate to that chemo hitting you suddenly in the evening, and the "up and down" from bed stuff. I used to do that too. I'd go to bed for awhile, but I usually stayed awake and listened to the radio or something; maybe drifted off a little here and there. Then I'd get up for half an hour or an hour and do a few things around the house and then, bam, back to bed for another hour or two. I did that pretty much all through chemo; up and down for an hour or two all day long. I slept fine at night. Sounds like you are getting some real good sleep and that is good too.
Again, it is very nice for us to get this update and I'm so glad that you are making progress! Thank you.
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rita,
Good to hear from you! I must say that the whole tone of your post was considerably stronger and confident than your earlier posts. Good on you girl for finding your strength 👏. I can’t comment on chemo as I’m the strange stage IV member who has never had chemo but has a port!
TBH, many patients these days not only want but demand to know everything about their medical situations. Additionally many doctors value active patient involvement with their own care. As for me, I’m a learner. I love learning about almost anything. When it comes to my having bc? You’d better believe I want to know everything!
You really do sound much more relaxed yet strong. Take care.
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Rita, it was so good to hear from you. It sounds like you're doing "well" (if you know what I mean). I do think that starting treatment is really comforting, even if it is not showing immediate results with shrinking your tumor. I'm glad that your second chemo was a little easier than the first.
I hope you have a restful weekend. Keep us posted when you feel like it.
(((hugs))) Carol
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Hi everyone, I have some important questions to ask the group today but firs let me respond to the most recent posts...
ThreeTree The order for me not to lose weight has been disappointing especially since leading up to my BC diagnosis I was doing well on my diet and had been looking forward to losing quite a bit more. It's my understanding that previously (like as soon as a few years ago) very overweight people like myself were being under-treated with chemo and it was leading to them dying at higher rates. Doctors were putting caps on chemo medicine so that a 100 lb person was getting the same amount as a 300 lb person. These days, they are basing chemo amounts on total weight. So I'm probably getting double or more than what the average size person is getting. And I guess they don't want me to lose weight because they like being able to pump so much into me. It makes sense and so I will keep my weight in range for the duration.
exbrnxgrl I know it's not normal for me to be avoiding my diagnosis details. But to be honest, I don't feel normal right now. My anxiety is at such a level that I no longer remember what it feels like to be completely relaxed. It's sad but this occurred over 7+ years of high stress (unrelated to the BC) and it has left me feeling damaged inside (glass nerves). I simply don't think I can handle anymore bad news. In fact, yesterday I started taking my antidepressant again. While I was feeling okay on Friday, Saturday I woke up and was feeling sad, for no (new) reason at all. Feeling nothing is better than feeling sad or anxious, for me anyway. I've told my husband that is some concrete positive news comes out (like the tumor has shrunk significantly) than I will have something to grasp onto and can wean myself off the antidepressant meds but until then, I need the help.
Sunshine99 Hi Carol, yes it is quite a relief to be receiving treatment finally but read below because I have some new concerns.
Okay, so I was told when I started chemo that I could eat ANYTHING, save for raw meat (sushi) and unwashed fruits and vegetables. I had been eating healthy for the 2 months it took to get me from when I first discovered the lump to when my first chemo treatment started. By healthy I mean, anti-cancer foods. I was eating daily leafy green salads, lean meat, lots of nuts, blueberries, salmon broccoli, etc.
I checked out the "foods for cancer" website and most of the items on there were okay for me, except maybe for the nuts. But given my doctor said anything goes, I decided to continue to include nuts in my diet because I needed the extra calories during the more difficult chemo weeks.
However over the weekend I googled (yes, I know I shouldn't have!) and found that triple negative breast cancers have been shown to be influenced by diet. And one study, based at a university medical center, said that I should adopt a Vegan diet and avoid all meat, fish and dairy products. It said that the amino acid methionine, which is found in high levels in meat and animal products, has been linked to TNBC cell growth (or at least reducing it was linked to slowed growth and death). When mice were deprived of this essential amino acid, their tumors shrunk. It seems to be because limiting the amino acid makes the tumor more susceptible to the chemo drugs. It also said that nuts were high in this amino acid so while I thought I was fighting the cancer with my diet, I was actually making it worse! I think broccoli was mentioned in there as well. Another study linked glutamine to TNBC, another reason to avoid meat i guess. So Monday or Tuesday I plan on getting some answers. I already have the odds stacked against me in this fight and I need to know how best to attack the cancer. I was told when I first came to the cancer treatment center that I would get a nutritionist but no one has talked to me about it since. So I plan on taking advantage of that offer.
Okay now for the more disturbing part. On Nov 2 I received my first chemo treatment of 2 chemo drugs and 1 immunotherapy drug. That went without a hitch. However on my second treatment Nov 9, I was told I was to receive 1 chemo drug. Now this differed from what I thought I remembered being told. I thought they had told me I would receive 2. But my memory is poor and so I didn't question it at the time. When I left treatment, all I remembered was that they had given me something that started with a "T". However, it had been bugging me so I decided to check out their website and see what exactly I had been given. It turns out that I did, in fact, receive only one drug, Taxol. That is okay because that was one of the three drugs I received on the first treatment. However, I checked my paperwork and going back to my original meeting with my oncologist, she had written down that I was to receive 2 drugs each week and 3 drugs every 3rd week. In other words, according to my paperwork, I was suppose to receive both Taxol and Carboplatin.
So now I'm feeling angry and let down. I have so much working against me in this cancer fight...the triple negative, the very large tumor, my excess weight, etc and to think that a mistake has been made, one which hurts my odds even more and could have never discovered, isn't sitting well with me. I'm hoping there is a good explanation when I ask them about it on Tuesday. But if it does turn out that someone made a mistake in my treatment, it won't leave me with much confidence. They always have two people verifying my identity and looking at paperwork before the chemo started so it appears that have lots of checks and balances in place. I just don't know how something like that could be overlooked.
Rita
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I use a glove filled with ice. When the area around my port starts to ache, the skin is numb and remains so through the sterilization prep. (Yep, power port- my kids think it should shoot laser beams out of it or do some other cool thing if it's going to get such a name). Takes maybe 3 min? I haven't ever timed it, but I never feel the stick. The one time I did, it wasn't so bad. I had been given an ice pack rather than a nitrile glove filled with ice, and my skin just wouldn't get cold enough.
I'm with others who say don't deal with people putting pressure on you. Had one woman tell me that I should be dealing more gracefully with cancer. This was two weeks into chemo after I'd gone into anaphylaxis a few times and had some stinky neuropathy (it resolved quickly after that! They monitor this stuff carefully and adjust and take care of you, don't get scared by that. Just finished week 11 with no anaphylaxis since the beginning). I decided when she gets cancer, she can show the world how to have cancer the right way. Until then, well, I've blocked her and see no need to ever speak to her again, and I'm much happier not dealing with such garbage. Not saying this is that, but cancer is hard enough. Take care of yourself right now.
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Hi Rita, I wanted to add, I do all my blood draws through my port. I tried after the first week of chemo to do one the regular way, but my veins, which have always been fine, were having none of it. Rather than go through that again, I've just asked them each week to go through my port. Sometimes they're drawing just before chemo, so would have drawn there anyway. It did freak me out at first, and I still hate the way the thing looks, but I'm really glad to have it for this long slog of infusions and bloodwork.
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rita, can you message your MO and ask about your last infusion? Do you see him/her before your infusion? I wonder if your treatment notes might say why you were given only the Taxol. I'm sorry this is happening like this. You don't need more stress on your plate at this, or any, point!
Carol
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Oof, Rita! I'm so sorry about what appears to be a deviation from your chemo protocol! Definitely message your doc and ask what is up. There may be a reason, but you need to know what you're being given when, and why. Hang in there.
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Rita,
Each of us is free to deal with our bc in the way that suits us. You wondered why doctors tell patients certain things and I simply offered an explanation. However, you don’t need to learn anything you don’t wish to know! Take care.
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Hey Rita,
I don't think you can make your life decisions based on one or two mice studies. Fact is we have very little good evidence for impact of nutrition on cancer in humans. (There are apparently some better quality studies for impact of diet on chemo tolerance, that would be very relevant for you). So many things that show promise in mouse studies end up going nowhere in humans because in the end, we're not mice...
And in fact, people eating all kinds of diets get cancer. People on pure keto/"carnivore" diets get cancer, people on pure vegan/organic diets get cancer, and everything in between. Please please please do not beat yourself up for what you are eating or not eating. You didn't give yourself cancer and you're not in control of it.
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I’m going to join salamandra in urging you to not try to fix blame on yourself with respect to diet and also caution you that mouse studies, do not always or even often , end up being applicable to humans. And although it’s true that our lifestyles do effect our health in many ways it’s not direct cause and effect when it comes to bc. Healthier choices of lifestyle do lower risks of disease but do not guarantee good health nor a pass on deadly diseases.
I may have said this before but I am thin, active, rarely eat meat, don’t smoke, very light drinker, etc. yet I was essentially stage IV de novo. My sister had lived the most scrupulously clean lifestyle since the late 1970’s. She was dx’ed with a uterine sarcoma at age 50 and was dead just months later. So you’re thinking, “Aha, must be genetic!”. Nope, I had every currently known gene test and am negative for all. Additionally, we are Ashkenazi Jews who have higher rates of BRCA due to our relatively small gene pool. So both of us were in theory low risk. One of us is dead on the other is on the path.
So my friend, while it never hurts to take care of ourselves and our health (You just might feel better too! Check out restorative yoga.) it is both pointless and false to blame your diet. Take care.
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Hi Rita,
The deviation from your chemo protocol very likely was the result of the fact that Taxol is given weekly and the other chemo drug may be every other week or every 3 weeks. I would inquire with your Oncologist. It is highly unlikely that they made an error.
Kristen
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AMG2 I'm super-excited to be able to give blood samples through my port now. Most of my worst experienced came during the time leading up to the port being installed so I didn't have much of a choice and then afterwards, insurance didn't cover taking blood through it at the cancer center unless under special circumstances. However, my doctor was able to get it approved given my history of poor vein access. The ice trick sounds like a good one. I probably am okay with just putting a little lidocaine over the area an hour before. I still feel a small prick but it's nothing compared to what I've been use to so I can tolerate it just fine.
Sunshine99 AMG2 I tried visiting the doctor's website but didn't see a link of where to send her a message. I will be calling the office this morning to discuss my concerns. There is a nurse on call 24/7 but I didn't think it merited disturbing them over the weekend. My next port draw isn't until tomorrow so there's still time to get it straightened out. It did cause me a bit of worry over the weekend though. I just want the maximum amount of chemo pumped into my veins at each session. I can handle it and my life might depend on it. According to my original paperwork, which I received during the visit with my oncologist, I am suppose to get Pembrolizumbab + Paclitaxel + Carboplatin every 3 weeks and only Paclitaxel + Carboplatin weekly. However, when getting chemo last week, the nurse only mentioned receiving 1 medicine Taxol (Paclitaxel). I've read about Carboplatin and it has shown some positive results when added to Taxol. So I want to make sure I receive both.
The whole thing has caused me to rethink my decision not to have genetic testing done. My insurance wouldn't cover it and since I don't have children, I thought "what's the use?" at this point but it may be helpful in making decisions about which medications would work best. I think it will cost me a few hundred dollars out of pocket but it seems like it could be money well spent.
exbrnxgrl I got that you were just explaining reasons why others want to know. I agree with everything you said. I was just offering the reasons behind my approach which admittedly isn't a healthy or normal one. But I've learned that my desire not to know could, in fact, be dangerous. I mean, look what happened during the last chemo session. I was not given one of the meds that I was suppose to receive (or I think that's what happened). I need to be more vigilant and proactive with my treatments if I have any chance of beating this. Mistakes can be made and it could cost me my life.
Salamandra and exbrnxgrl I have to trust that my doctor is keeping up on the latest studies then. The treatment of triple negatives is so much less effective than other BC and a lot of new developments (such as giving overweight people more medicine) has only been adopted in the past few years. I wasn't intentionally beating myself up over my diet but instead was trying to adopt new eating habits that would increase the effectiveness of the chemo drugs. But it does make me nervous when I read that certain amino acids or foods could contribute to the cancer growing, even if it's just in mice. I would feel much more at ease had I been diagnosed with a BC treated with hormone or HER2 therapies. With those, they know what is feeding the cancer and can stop or slow it. With triple negative, they can only guess and so reading that a certain amino acid showed changes in mouse tumors is hard to ignore even though it is just in mice. It's more of me wanting to do something proactively to help in fighting this rather than sitting back and waiting for my chemo infusion once a week. If I can do something, anything, that is proven to hurt or kill the huge tumor in my breast, I want to do it. I was just feeling the tumor yesterday and it doesn't seem to have shrunk any and I am entering my third chemo treatment tomorrow. I just want so badly to see some difference in it.
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exbrnxgrl - Very sorry to hear about your sister having died from a uterine sarcoma. They are supposedly very rare. My mother died from one also. Apparently very little is known about them. She was about 80 when she was diagnosed and died at 84 from the disease. Interesting too how your sister was a "health nut" for lack of a better term, and my mother was anything but. I often thought her complete lack of concern about what she ate - increasingly more cookies, junk food, sugary drinks, and fewer fruits and vegetables, along with decreased exercise and more "sitting all day" as she aged might have contributed heavily to her situation, but I'll never know. Your sister would be the complete contrast. At the same time everything does point to a healthy diet and lifestyle contributing to overall reduced risk. It just doesn't account for those individual differences that could be anything from genetics to chemical exposure to who knows what. None the less, I try to eat well and at least get in that daily walk.
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exbrnxgrl I am sorry to hear of your sister's passing as well. It seems there is no rhyme or reason behind who gets cancer and who doesn't. I know many older relatives who completely abused their bodies their entire lives (smoking, drinking, poor eating habits, no exercise) and are living well into their 80s with rarely a health concern. I had more risks than you but still was quite shocked at my diagnosis. Sometimes I wonder (wishful thinking) whether a mistake had been made and my biopsy results could have been mixed up with someone else's. I look at the factors around my TNBC diagnosis. The fact that most are grade 3 and mine tested at a grade 2. That they tend to be fast growing whereas mine received just 1 point of 3, putting it in the slow growth category. The rarity of it, making up only 10-12% of BC and affecting a high number of black women (I'm white). The tendency of it to affect women with dense breasts. My breasts are B density on a scale from A to D, with A being mostly fatty and D be extremely dense. I guess I'm not completely past my denial phase. Thanks for the tip on Restorative Yoga. I would certainly benefit from it as I have some arthritis in my lower back which showed up on the bone scan.
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rita,
Good on you! Again, as a lifelong educator I firmly believe that knowledge is power. Ignorance may temporarily be bliss but can also be dangerous. Small changes to diet and lifestyle tend to be more easily maintained than extreme changes so take your time and you just might see lots of small changes add up to larger ones. Take care
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Rita - I can really relate to your "denial" and hoping your tests got mixed up with someone else's. It's been a little over 3 years since my diagnosis and I'm still doing something similar. My cancer started in the exact same spot where I had an old benign fibroadenoma at age 19 (I'm 68 now) As things started to look bad, I kept telling myself it was that old fibroadenoma and that maybe it was growing back. I even delayed seeing a doctor because of this notion; kept telling myself that whatever it was it was probably benign - all because it was in that exact same spot. Well of course it came back as IDC. However, I still toy with the idea of sending the slides to some other institution just to see if they have a different take. In my heart of hearts I really believe that what my medical place did pathology wise was way more than likely spot on, but there's a little part of me that wants to explore more and find out that it really was "just" that old fibroadenoma gone crazy and that what I have is actually benign. Yes, denial and pipe dreams!
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Just writing in to let you all know that I talked with my doctor (indirectly) and my chemo regime last week was correct. Apparently there were two options. They could give a large dose of the highly toxic carbo every 3 weeks during the Pembrolizumbab + Paclitaxel + Carboplatin infusion or they can give smaller doses on a weekly basis. My oncologist opted to give it every 3 weeks, as long as I could tolerate it. So I'm happy to learn that it was intentionally withheld and not a mistake. These off weeks are fairly easy to tolerate, comparatively speaking. I had some fatigue and the occasional short-lived nausea but my appetite was always there. Tuesday should be a repeat.
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