TRIPLE POSITIVE GROUP
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Hi All,
Tomorrow I start taxol #8. I was wondering if I should expect new side effects? Right now I have worsening fatigue, hair loss, really bad acne, dry sinuses and weight gain. I'm starting to feel low. I question whether I should have shaved my hair. I feel guilty about being inactive and gaining weight. I'm angry because I'm trying to keep up with daily activities and outside commitments and no one seems to realize how hard it is for me they all say oh you're doing fine. Even my husband is becoming thoughtless to what I'm going through. He is my only support system and has his own health issues so it's hard to ask too much of him.
I swore I would never get on here and whine but if I don't, I'll carry my pity party and crabby attitude around for days.
Thanks for listening. I feel better already
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bjquilter, I have whining here a lot so please do not make me feel bad knowing that there people here who swear never to be like me)) kidding, I have been doing a lot of complaining, ranting and venting and intend on doing ignor again if I would not be able to stop it. This is your place to whine too, so please go on.
About Taxol, I shaved my head after the 9th infusion and by that time I looked like Gollum. By my 4th Taxol I got so depressed towards the end of cycle and they put me on a mild steroid, I got better. The nurse at my clinic told me steroids were causing this depression but I knew that even if steroids had anything to do with it the primary reason was the horror of the diagnosis. It did get better with the anti-depressives I have to say. I see that we have the same problems with Taxol, I had skin problems, they are getting better now, gained weight, dry sinuses that I treat with nose oil, and, yes, it is true people outside have no idea what you are dealing with if you put up a bright face and decide not to bother them with your problems because you simply are a good-hearted person who was brought up this way. I lost two best friends over telling them how terrified I am and how I needed moral support as often as possible, which in their case since they do not live here was to listen to my whining and ask me about how I was over FB. They couldn't do it, so much for friendship, one of them stopped writing back in September and before that she did not write anything for five weeks, another one stopped writing to me and turn instead to my husband telling him that she did not know how to talk to me anymore and did not know how to help either, so she preferred instead to keep in touch with him and he could send his updates to her. I still cannot believed it happened, we were friends since ground school, close friends since junior high, I have not heard from her since October. And coachvicky mentioned once that she caught one of her close friends reading a book how to deal with a friend who got cancer. She also told me that I will see who my friends truly were which is a gift most people won't have. True, so true, thank you coach vicky.
To make a short story long) this is your time to be selfish, your time to ask people for help, often, as another person on this boards told me, they do not know how but if you define a task they would be happy to, or they would find a reason not to but then I would know. And the last thing, my hat off for all you people working through chemo, I work 25 per cent from home but did not go to the office since July. Cherry
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quilter - many of us have to deal with our "Superwoman" syndrome. It isn't realistic for you or anyone else to expect you to carry on as before. You have been diagnosed with a serious disease which needs your attention. You haven't made your status public but I assume that you have already had some type of surgery and probably radiation in addition to the chemo, all assaults to your body. Many of us suffer from PTSD. Especially if you are younger (I'm 71), your friends and loved ones don't know how to respond to you, especially if you tell them that you are "fine." (A friend who was diagnosed with colon cancer shortly after my diagnosis said she told people she was fine when she was but only OK when she wasn't. And then let them ask questions and help her.) I choose to think that I now know who is my friend and who isn't and I am stronger for that. I found myself practically in tears yesterday after someone called me again to just see how I was since she hadn't seen me recently.
About hair - I buzzed mine about taxol 4 and shaved by 6. I actually liked my bald head better than the fuzzy, growing in phase. Mine has been VERY slow to come back and I'm not looking forward to the "thinning hair" that is a SE of femora but...
Be good to yourself and take time for yourself - a walk, a bubble bath, a massage. It's not to late to say your can't have 12 for Christmas dinner or throw your usual New Year's bash. And it's OK to come to these boards to whine and yell!
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Just come up for an update. Did my #1 chemo last Thursday. So far so good, no serious side effects yet. Once in a while, a bit numb finger and foot. Been drinking lots of water as advised. Should I drink the same amount of water all these chemo weeks or can I cut down a bit. It's getting a bit more difficult to down the water now.
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So....good news! We think.
I went for the biopsy today. The doc could not replicate or find the same place that the first ultrasound had seen, so he said in good conscience he could not go fishing around for something he couldnt see.
He recommended that I get a ct scan with contrast. Called my doctor's appointment and an hour later I was having that. Got the results back and nothing jumped out. There is a mildly enlarged thyroid nodule that they are going to ultrasound specifically and watch. There is also a small spot of some kind on a vertebrae that they are pretty certain is a hemangioma, but are also going to watch that.
So, I hope to know more on Thursday after the ultrasound but the supraclavicular node seems to be clear. That was my biggest worry.
Thanks for all the good wishes. I was a mess yesterday. Couldn't even wrap presents or focus. Sleep didn't happen. I may have taken ten years off my life in stress.
Quilter...whine away. That's what we are here for. There are things I have said on here that I could never have said to my husband or family. They just wouldn't get it. On things to expect with additional taxol side effects, my counts were my main thing. They held in the normal range but were about as low as they could go at the end. My fingers and toes were always freezing. I wouldn't worry too much about your hair. I did not shave mine, but by the fifth one, I had what I called the Beetlejuice look. I was not going out in public that way.
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Oh fluff! What good news. I'm so happy for you!
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HapB - I too am having cardiovascular issues after 4 bi-weekly rounds of AC and 3 weekly rounds of Taxol with herceptin and perjectin thrown in every third week. (No history here of heart disease)
MO ordered an immediate echocardiogram today to be compared with my baseline echo from September. He said no more perjectin or herceptin until I meet with a cardiologist tomorrow. They are concerned about my "muscular heart" and the fact they are putting these tests on the fast track has me concerned but glad they're doing it.
I'm so sorry you are going through this as I suspect it means some difficult decisions need to be made.
I'm feeling a little low today - when one door closes, another door closes. I will be following you in hopes there is a solution for this.
Thanks for sharing your story. Nice to know that PLU's (people like us) have this safe and supportive place to come to
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fluffqueen, phew! what a great news! You and your family must feel such a relief. I can nearly picture when you are saying how you felt. It is not about being a mess, it is a feeling of this is it. I already said it but I hate this disease for turning women who most certainly have nothing to worry about into trembling cornered wretched animals . Even worse, animals do not have the same sense of what may come next. I am referring to myself in the first place, you can pick me from the floor with a sponge as soon as any strange symptom appears. And I have such a trouble trusting the doctors because I knew already by September last year that something was wrong with my left breast and despite the appointments, mammos and US they did not found anything until I found a lump myself.
Once again, great news, take a deep breathe and wrap your presents, hugs Cherry
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Fluff, I am happy to hear that all seems well. Do you still wonder in the back of your mind about it or are you feeling satisfied? I know about waiting on tests and the results and the lack of sleep, maybe now you can take a deep breath and rest.
Bjquilter, So glad that we have each other to express our frustrations, fears, anger, aches and pains and remedies with.....Oh and tears! I agree totally with Taco when she mentioned what she called the "Superwoman" syndrome and when she said: It isn't realistic for you or anyone else to expect you to carry on as before. BCO and the TP thread is amazing.
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Hey everyone, I had an interesting occurrence yesterday at a Dollar Tree when I was there with my grandchildren. Out of the blue, a woman walked by me and said "I went through it" (I thought maybe we were blocking the aisle, but yet we were well out of the way and I thought she said "she could get through it")....I looked confused and she said again, "I went through it" and I realized she meant BC. We talked for awhile and THEN another woman came up, apologized for eavesdropping and said she heard a few of our words and had to let us know that she too was a BC survivor. Three women at the same store, in the same aisle, on the same day and at different phases of our recovery....I believe God put all of us there to encourage and uplift each other. We shared thoughts on reoccurrence (the one lady had a reoccurrence), the treatments we went through, the chemo, how we were feeling now about the dx and also about life with this terrible disease. I am amazed... Three women at the same store.......
Melanie
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Fluff ... I am happy for you!
Melanie ... At some point I think "know." We can see it in others. That is amazing that all three of you were there, same place, same time. It must have been divine intervention.
Early on a woman stopped me at the grocery store and told me how she liked my hair. That was back when I was still crying. I started crying again. She said something like I know and you will get on the other side of this. She shared that she had.
About whining ... I have been on BCO for some time now. I have never read whining from anyone. It is here that we can find our voice and express it. I believe when we express ourselves here, it is easier to express ourselves other places.
Vicky
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fluffy, excellent results you must be feeling so relieved.
Cherry, you may have overdone it on the raspberries. Try bland. I find a couple of pieces of toast with a smidgen of butter settles my stomach. I don't tolerate oily Salty, sweet, or even mildly spicy food for 2weeks post AC, , 3rd week a little flavour is ok. I'm on nexium for chemo induced gastritis. Mostly it's ok. Oh but I long for butter chicken, Camembert, salami and quince paste....
See no whining, just venting with you lovely ladies who can relate!
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Vicky. To your words I say AMEN!
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Hap, the CDC keeps track of cancer incidence by several factors - there is a query tool on there website
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Hap, one of the reasons we’re not hearing about cancer clusters as we did in past years - like what happened in Woburn - is there have been major clamp downs on environmental pollution. The CDC website chronicles other clusters that have been identified in more recent times and sometimes a cause can’t be identified.
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Hap, one more thing - It’s odd that no one could tell you if your cancers were reported, since Massachusetts, like all states, requires physicians to report all cancer diagnoses for the express purpose of being able to identify possible clusters.
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Lita and Hap - I am a downwinder from a radiation accident in the late 50's (Santa Susana - July 1959) - my dad, my brother and I were all diagnosed with cancer, my brother and I diagnosed two years apart and we were both 54 - they both died from their Stage IV de novo cancers of differing kinds, and my mom had a rare degenerative neuromuscular disease. On our street of 10 houses there was cancer in more than half, and the cases of lung, liver, stomach, bile duct and breast are just the ones I know about - a number of these neighbors moved away. The CDC definitely tracks this cluster, and because I am a military spouse, I am included in the US Military Cancer Registry. California also has a Cancer Registry, but I am not included in that one because I didn't live there at diagnosis, but both my dad and brother would be. The CCR reports in conjunction with this radiation accident so there is coordination. I believe most states have a cancer registry - I live in Florida and there is one here.
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SpecialK - What was the source of the radiation
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Fluff,
Happy to read about your positive news!
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Chemo #2/ Day #1
Uneventful. So far. Trying to get ahead of the BIg C by taking Senokot/Colace/ Fibercon pills & Fiber Cereal Today. and if nothing happens by tomorrow I'll bring out the big guns ; Maralax.Hi whywhy - I see that we have the same chemo Treatment. Hope you have easy SE's/ Yes, Drink water and never ease up! one of the ladies posted she put frozen fruit in her water - I like my water Ice Cold - and I added a frozen big strawberry. Yummy. Or mixed 1/2 water and 1/2 Power Aid. Or I drink a lot of Seltzer water. But I still love plain old water.
Take care,
rj
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Fluff...super awesome news! So happy for you.
Special..your street sounds like the one I grew up on in NJ. Of the 14 houses on my block, 10 had someone diagnosed with cancer and 5 houses had two or more with cancer. The two blocks surrounding my block...pretty much the same. It was breast, stomach, ovarian, lung, and head and neck cancers for the most part. Marcal Paper Mills is in my town and we wonder if it was that factory.
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hap - numerous sources and tracking studies - examples, links:
http://dtsc.ca.gov/SiteCleanup/Santa_Susana_Field_Lab/SSFLCancerStudyExposureAssessment.cfm
http://ssflcag.net/resources/Cancer_Studies/%5BCDHS%2C%201992%5D%20DHS_Cancer_Study_1992.pdf
The CDC also tracked it, and yes, there were settlements - $30M from Boeing, but they were made a few years prior to my diagnosis. The area where I lived was very much a bedroom community just a few miles southeast of this site - the first classmates started dying of cancer by our 10 year high school reunion. However, 1 in 3 Americans will have cancer in their lifetime, so direct causation can be a sticky wicket.
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Hap...nope. Isn't that bizarre?
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i don't post often but i always check in
fluffy that's awesome! Love hearing good news.
Things are going ok here, Im on Tamoxifen and herceptin every 3 weeks. So far the Tamoxifen is giving few SE.
My radiated side actually looks better then the non radiated side. I hope that means they will do the exchange earlier. These expanders suck. Can't find a comfortable bra. Any ideas?
I have a hard time following everyone on here but, i will try
Cherry, glad things are going as good as can be! I knew you could do this, we find strength when we didn't know we had it.
Suburbs, if i remember right we are dancers? So i talk the
Coach, glad you are moving right along
Special, as always i love reading your posts, so much information.
Hap, i hope your heart is improving
And geez who else. Rlges, glad you are having minimal SE so far,
Lita, how are you?
Have a great day ladies
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Hi all. Busy board here. It's hard to keep up. : )
Fluff, great news. Very happy for you. rest easy.
cherry-sw, for nausea, I drank coca-cola occasionally with the bubble stirred out and ate saltine crackers. More often the nausea was caused by reflux. Daily nexium helped. Hang in there. It may make sense to go back to see your MO and get a different Med. Bland food like bananas and rice may help.
Moodyblues, what a beautiful story of fellowship and support. Thank you for sharing. It reminds me that we are not alone. And suffering in silence is not necessary. For anyone thinking that they are complaining, just imagine we all met at the grocery store and shared our common perspectives.
Ventureval, welcome to the board. You are doing great if you can shave your head, don your wig, and head to work on the day after your second chemo. Bravo. And you are so right that a wig is much easier to wear when it's not hot. Good for you. Triple negative or triple positive, you will never find a better place for support than here.
Bjquilter, let it rip. We have all been there and can support. If you've gotten through taxol 8 and are still keeping up with commitments then you are a super star. Please give yourself a break and ratchet back your activities. It gets worse before it gets better so please give yourself a break. Many of us gained weight during chemo. It happens. If you are not taking an anti-depressant, now may be the time to start. Ask your care team.
Simbobby, I hope you get a good echo result and can resume treatment soon. This is a tough problem but it sounds like your care team is doing their best to monitor you. Hang in there. Please keep us posted.
Finally, HapB, I hope you get a turnaround very soon and things get back on track. It's your turn for some good news. I know your grocery cart is full of good healing stuff. Next time I go to the store, I will try to channel some of your good habits. No doubt there is plenty of room for me to improve. Thanks for sharing links about nutrition. It's on my list to learn more over the holidays.
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And one more thing, shelabela, Hello and good to see you posting. Very glad to hear that you are not having awful side effects from the temoxifen. Hope you get your switch soon. Just the word expander is like a form of medieval torture. The things we have to deal with!
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I totally agree Hap, as a matter of fact...we can send satellites to other planets but we can't stop cancer in its tracks? It's a big money maker and I don't think we will ever see the cure. Just my belief.
Sheila, I am in the same boat. Expanders are driving me crazy. I bought two bras from Amazon, Yanira post surgery bras. Comfortable but still ugly. I am now going to buy a Coobie. My friend said they are very comfortable and you step in to them, you don't have to pull over your head. Another friend swears by jockey bralette.
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KimCee
I wore tube tops from Amazon when I had expanders. They are preyty inexpensive and come in various colors. I wore my surgical vests at night.
Vicky
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Hi Shelabela, it has been a while, glad to hear from you, sorry about the expanders, I have no experience of those since I had a lumpectomy, so. Glad you have no SEs from Tamoxifen.
moodyblues, thank you for sharing, I still have nobody I know except you guys who had bc, nobody has ever approached me anywhere and in every waiting room I am the youngest one. If it wasn't for the blogs I red online and you guys on these boards I had still thought that no women gets bc at my age.
Suburbs, about the Coke and nausea, glad you brought it up. Today is six months since they told me that the lump in my breast that I found in the end of May looked like bc on both mammo and US. Five months before that I had a clear mammo and an extensive US of the same breast. Go figure. Today is also the third day since my second EC. I am on steroids and I crave burgers. I did some homemade the other day after my infusion but was nauseaus and did not eat any, yesterday in the morning I was nauseaus again but after I took my pills I got so hungry that I ate two burgers but nothing in the evening. I even been productive and went to Christmas market with the kids and the eldest DD's BF. Today I was nauseaus but again so hungry after I took my pills and I had the last burger, we just kept frying those, and some soup and then went straight to bed to watch Unbreakable Kimmy Schmitz only to realize that I wanted a burger! What is that?! The eldest DD went to get a hair cut and I did someting I have not done for the last six months, I asked her to bring me a full menu from Max, I do not even like Max, I used to be a fan of Burger King, and only when I had hangover. But Max is the only burger chain we have on the island where we live so she got everything and I devoured a whole hamburger, onion rings, chicken wings, pommes and, wait for it, a medium size Coke. I had nothing of it in six months, I did not drink anything except for tea, water and occasionally a coffe for half of year. After I ate all that JUNK, it did taste good though, especially the Coke, who came up with this divine beverage idea (!) I could not even sit up, I only laid down. What is wrong with me?! 😩 I have to get up and do some things and as soon as I get up I am nauseaus and it is like gravity, it pulls me down, so much for the Emend and these steroids pills. Ok, a rant again, it seems I cannot do any better on this thread. And I really need to go up and get some work things done, there are people waiting for me to respond and I am a meathead today! Thank you all for listening.
Coachvicky, have the best holidays of your life!
HapB, I really hope your heart issue will resolve. I red somewhere on this boards and completely agree with it: I would rather die of heart failure than bc. It seems to me a better way to go, but this is me. So after this EC I hope I can resume Herceptin, I would rather choose more is more than less is more. The only thing I dread is actually rads, I do not know why, or I probably do, radiation, the fear of it, it is a bad connotation to me since I have been worrying about the consequences from Chernobyl accident my whole life. So rads to me is a life-sucking procedure I am subdueing myself to, cannot help this feeling, but I will start on Feb 5th, more is more.
Great holidays to all of you, although I will hang here anyway, hugs from dark and cold, especially dark, Stockholm, Cherry.
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