TRIPLE POSITIVE GROUP
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They don't give me any pre meds now, just H& P. I do fine.......so far. 🙄
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I actually asked them why they had no healthy options. They said it had to be processed foods that would keep. The sandwiches are brought in by the hospital next door. I asked for fruit and they said no. I thought I should start bringing a basket myself to share but I'm not sure they'd let me. I also wondered why during chemo they gave me a large binder with info on the drugs, side effects etc. The material encouraged eating, all kinds of puddings, ice cream, milk shakes, cakes and cookies. The only fruit mentioned was banana for diarrhea. I asked to talk to a nutritionist because I've always tried to be healthy (and I am other than this episode with BC). The nurse said they didn't have one anymore because not much need for one? I asked about Keto, vegetables, fruits and the healthy way I was eating and the only response I got was , "it can't hurt!" I'm confused why medical professionals seem ambivalent about it.
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but I did eat their cheetos and enjoyed them. 😉
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Blownaway-did you take cymbalta while you were on Tamoxifen? I ask because there is a significant drug interaction between them. When I started tamoxifen, I had to switch over wean off Cymbalta. I took effexor for awhile to help with hot flashes. Now that I am on arimidex, i had terrible joint pain, so they put me back on cymbalta, which makes a huge difference.
ingerp-I had weekly taxol. I got mine on Wednesdays morning. I would be high on steroids all day Wednesday. Crash mid-morning on thursday and start to come back on Friday. Then would be pretty good for the weekend to go out. I loved your graduation picture. 6 years ago, we flew out for my daughter's graduation in California. I went a day ahead of everyone. I had herceptin in the morning, hopped on a plane shot up on steroids, was up half the night with my daughter in a hotel room, and passed out under a beach umbrella listening to the ocean on Thursday until everyone got arrived Thursday night. By Saturday, I was good to go for graduation.
On herceptin length-it is interesting to read all the studies. When I started, (7 years agoish) my NIH trained oncologist said who knows whether a year is best, or if chemo is even needed with it. It was all too new and there just wasn't enough time involved in studies to know what was best yet. Until then...it was one year and chemo mix.
My lvef dropped to around 55 and leveled there. Around the last one, it had dropped to a smidge below 50, but they deemed it was ok to finish out. I was a little short of breath, but not terrible. i was also told that exercise was good, but it wouldn't affect my lvef.
Food...I always took my snacks with me, including my green drink which was one of the few things that tasted good. After about a month of my weekly taxol, one older nurse asked me what was in it. I told her raw spinach, some cucumber, apple, etc. She almost had a coronary giving me lecture about the fact I should be on the neutropenic diet. Hmmmm....missed that somewhere. Said I shouldn't be eating anything raw. Double Hmmm....i didn't mention the salads and everything else I had been eating as hot food tasted terrible. Then the oncologist and another nurse came through. both said my counts were good and they had been to seminars that dismissed a lot of that, but to make sure I thoroughly washed everything. I did give up salads in restaurants.
To all of you taking Prolia-last year I discovered a co-pay program that I didn't know about. It is huge. Covers $1500 a year, about the cost of the two doses. My new oncologist likes to keep her people that are on Arimidex on prolia, but she is going to evaluate after I have a bone density test on Tuesday. Mine had gone back two normal two years ago. Here is something else I learned from her. If you are on Arimidex, you can get a bone density test once a year. Maybe mine never warranted that so no one ever said anything, but just passing on.
And finally....name brand Arimidex. When I went back on Arimidex (kicking and screaming), I decided I was going to do the Arimidex brand plan through the site, rather than the generic. It is probably all in my head but, I have far fewer side effects. Hot flashes seem to be a smidge worse, but doable. Joint pain about the same, but the lethargy and brain fog isn't there. It is hugely better.
My last two weeks have been stressful. My almost 91 year old mother went to the emergency room with severe abdominal pain. After ultrasound and scans, they found some kind of mass in her gall bladder. Decided they were going to do an ERCP stent. In the meantime, her bp is tanking, and her PCP's office calls me to tell me her a1c from her appointment a few days before that was 13.1. It was over 400 when she was admitted also. She was touch and go with the bp, but they got it back up, did the procedure, all good. She bounces back. She is in rehab and I am sure will go home next week. But they want her to take insulin shots. she told them she wasn't really interested in that lol, nor was she interested in being trained to give herself the shot. The woman is EXHAUSTING. Also told them she had no interest in going into assisted living and was going back to her apartment. (largely because she is the pretty much the sole means of support to my off and on drug addict brother, who over the course of 20 years, she gave all her money too). She is well aware that if she goes into assisted living, he is likely on the street as there is no cushion to provide for him anymore.
So...I have to figure that out now, knowing full well she would be far better off in assisted living, but also knowing she is pretty with it yet and if I force it, she will throw a massive fit and probably have nothing to do with me.
In the midst of all this, we don't know if her mass is cancerous or not. They did not biopsy it because they put in a temporary stent and wanted her under a minimum amount of time due to the bp issues. Her heart function is only 15%, which it has been for awhile, so the gastric guy doesn't feel she is a good candidate for surgery. On normal people I would agree, but her side has long life, even after things that should kill them haven't. I told him if it was something contained that they could do laporoscopically when they put in the permanent stent, then that might be one thing. if it was something more, than no I agree with no major surgery. But her brother had a huge carotid surgery at 89 that they told him to say his goodbyes before surgery lol. He is still here at 93, along with his wife (married 70 years!!!). Her sisters passed away at 94, one after having a bad heart, had come back from a broken pelvis, had bladder cancer probably due to the actonel drug, and had to have a pacemaker put in because the chemo drug they were sloshing around her bladder, messed with her blood sugars (diabetic) and then a heart arythmia developed. She also had breast cancer, early, before all this happened and wouldn't do a lumpectomy because they didn't think her heart could handle the surgery. They are a feisty bunch.
Oh well, it is always something!
Hope you all have a wonderful memorial weekend. I plan to be out making some memories for everyone to remember someday!
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cupcake...cheetos...I LOVE THEM!
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Fluff -- Sorry to hear about your Mom. Family members in their 90s are often a challenge. It took my grandmother forever to give up her driver's license. My friend visits her Dad once a week to arrange all of his pills in a pill tray, only to find that he only takes about 50% of them as directed. Sigh. Hope her health improves!
Thanks for the tip about Prolia! I just started in February. I talked to my doctors about an annual dexa scan versus one every two years -- my GP says that I may not see much progress with an annual scan because Prolia often doesn't work that fast. He says that the "every two year" plan makes more sense because by Year 2, you can typically detect changes in bone density due to Prolia.
Re: snacks at infusion centers -- for me, the most important thing was hydration, hydration, hydration. That's why I enjoyed the soup so much -- it was a chance to get fluids that tasted good. (I was really sick of water after my first month of chemo.) The snacks were just there for anyone who got hungry and didn't have any alternatives. Honestly, I didn't pay much attention to nutrition during chemo. Sometimes, it was just eating whatever I could tolerate, like scrambled eggs. After chemo, I have focused more on improving my food intake.
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Fluff - The Doctor told me that there are 2 types of duloxitine (Cymbalta generic) she was prescribing the one that would not interact with Tamoxifen. Maybe someone here knows more about this. I took it in the morning and gabapentin at night but over time, had to keep upping the dosages and finally realized that neither was really keeping the Tamoxifen bone pain at bay and weaned myself off both.
I had also tried Effexor for hot flashes at the beginning of cancer treatment and it didn't do a thing. I've had hot flashes since menopause in my late 40's for which I took Premarin .... then b/c. Every time I divorce Tamoxifen, the hot flashes continue so it's not the Tamoxifen. I have literally passed out several times (racing pulse and major drop in b/p occurs) during hot flashes. Add the Texas heat to that stew pot and it scares the hell out of people around me!
I've recently stopped Tamoxifen for the 3rd time but will consult a new MO in July.
The last echo showed my LVEF in the low 50's but my normal was 56 for years according to 3 different cardiologists. I am rechecking it in July when I get better insurance. I have always had low stamina during exercise and tend to "see stars" and get breathless. The old people at the gym ran circles around me. Bear in mind that I always keep my weight under 130 so it's not due to self abuse (giggle, giggle). I try to maintain a healthy lifestyle.
Hope you figure out what to do with mom. Mine is in an independent living facility that is really nice and she can "graduate" to assist living when she needs to without moving. I don't recommend one of those companies that "help you find a place" because they only refer you to the most expensive ones in your area - I think they must get a bigger kick back from the high dollar places. We are talking thousands of $$$ per month.
Been away on vacation but glad to be back in my own bed
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I was reading the abstracts from the upcoming ASCO meeting being held June 1. This one caught my interest. It is not being presented at the meeting and is a publication only abstract. It's entitled, "Effects of antihistamine use on survival in breast cancer." Here is a link to the abstract for anyone interested: http://abstracts.asco.org/214/AbstView_214_229239.html.
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tess - this theory of anti-inflammatory meds is an interesting idea. Claritin (loratidine) is recommended for use during chemo to help with pain from Neulasta. It works by preventing or controlling the edema in the bone marrow that results from the formation of new blood cells, spurred by Nuelasta. Some use Claritin while taking aromatase inhibitors to help with joint pain. I eat a non-inflammatory diet (the Virgin Diet) and found much less joint pain upon starting to eat this way. Another non-traditional drug some take is metformin, myself included, to keep blood sugar controlled even though non-diabetic. There are some ongoing trials looking at benefit both during active treatment in the form of better rates of complete response, and for recurrence prevention.
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SpecialK - I'm interested in your experience with metformin. Did it lower your sugar as well as helping with the joint pain? Did your primary or MO prescribe it? There is late life diabetes on my father's side and primary always watches for a spike? My joint pain hasn't been too bad with the AI's but I have continued the claritin (generic) and have really upped my activity level.
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Tess111, thank you for that link. Very interesting indeed. I've been avoiding my allergy pills, as I am taking so many pills, I wanted to take less. Started back on them yesterday and could be the placebo effect but my joint pain has diminished this morning. I am going to give this a try
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Thanks, Special K, for the explanation on Claritin and Neulasta. I did take Claritin for bone pain while using Neulasta when I was on Chemo. I didn't know the theory behind it, but according to the paper, it sounds like taking Claritin may have been a positive thing, in addition to helping with the bone pain.
Suburbs, I quit taking Claritin just like you did and for the same reason. I did keep using Claritin while on Herceptin, hoping for some help with my constant nasal drip. (I used Claritin D for this with some improvement with the dripping issue.) But then stopped after I was done with Herceptin. I recently resumed regular Claritin because of horrible spring time allergies. Maybe that was a good thing!
Taco - it sounds like you are finding Claritin and exercise useful - hoping that it helps my joint pain, too!
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taco - my MO prescribes my Metformin now, but when I initially brought it up years ago he wanted me to ask my PCP for it - I did, but was refused. My primary care comes from a military treatment facility - not the most cutting edge and forward thinking group - I brought the study info but they weren't willing to go there without confirmed mainstream evidence, and a higher blood sugar than I had. I was on a statin (Lipitor) for a number of years, have since weaned off because I was looking for ways to decrease joint and muscle pain after breast cancer treatment and ongoing joint pain from letrozole, so asked my primary if I could go off. Lipitor has a link to high blood sugar, which I never had before taking it. I weaned down and saw no increase in my total cholesterol - which is only high due to my "good" cholesterol with normal triglycerides. The primary at that time said he never would have put me on the Lipitor, and do now have a permanently elevated, but not truly diabetic, blood glucose. I hover right at 100 untreated, so the Metformin does double duty for me.
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hap - which specific test are you asking about, I am unclear from your question?
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Tess thanks for the link, very interesting. I have been taking antihistamines for my spring allergies and did notice less pain in my legs the last few days. I don’t like taking more pills but it’s nice to get a “bonus benefit” when I need to take the allergy meds.
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hap - are you referring to lymphocytes, or the WBC? A specific count of lymphocytes ( a differential or B and T) is not always a regular part of a CBC, but if this is what you are asking, they can be affected by a number of things - infection, stress, low levels impacted by chemo, viruses and other diseases.
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Hi Everyone,
What are all you American ladies up to this weekend? One thing we Canadians notice about the Americans is that there is a ton of flag waving, and I mean that very nicely. My one friend was camping in a US campground over the 4th of July I think (or maybe it wasn't even a holiday at all) and she said it was incredible the amount of red, white and blue. I know there is a side to this that is likely less than savoury, but overall, I think the patriotism is wonderful. Canadians are much quieter. It's not really surprising considering we are the little sister to the North and our beginnings are a bit more subdued (but there was still lots of drama there in Quebec lol).
Fluff, I'm sorry you are going through all this with your mum. It's a very hard time when people get older and need care. My mum's husband has Parkinson's and just went into a home. Luckily, he has the savings to be in a good one. But this is a very hard transition for them. He wants her to be there constantly, and his changing mind (onset of dementia) is making his personality change (not for the better - he's much more demanding and says not so nice things when she needs to leave or has other things to do). He's a wonderful, wonderful man, but I certainly feel for everyone dealing with this stage.
What is the consensus on aspirin (just reading about antihistamines up above which reminded me of this other topic)? Do any of you take it?
I have a question...have any of you had brain MRI's before? I had one about a month ago because I'd been having wonky symptoms. The report says that they didn't see any enhancing mass or metastatic focus. However, they did cite that there is a tiny focus of hyperintensity (white spot) about 3.6 mm. They say it 'may be within normal limits for age". The nurse had called me and I put it out of my mind when she told me the results. However, yesterday I had a regular check up with my oncologist who said they are going to do a follow up in 3 months and that they do this in these circumstances as regular protocol (to follow up on the spot). This of course gave me some anxiety. I'm 49 right now...are hyperintensities fairly normal at this age? I know that starting in the 60's, they become very regular and are inn 90% of people over 70. Should I be freaking out because she wants to do a follow up? There were no other factors in the report that were suspicious (at this point) for mets...no edema, no infarction or hemorrhaging, no strange signals. But now I'm really worried that she wants to follow this spot. SpecialK, should I be freaking out that she's suggesting this??? And by the way, I'm a non smoker and have low cholesterol and blood pressure. I've had no head trauma...
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Hey Hap,
I agree that the US is very diverse, but you'd be surprised at our diversity here in Canada. Visit our major cities and you'll see - Toronto, Vancouver, Montreal... We don't have Central and South America just below us, so that certainly affects immigration from that direction compared to the US. But our population consists of a great number of Asians and other as well. Our country also has made a concerted effort to welcome refugees. It's all relative - we have to remember that our population is at least just 1/10 of yours. Smaller and more rural towns and East Coast - yes more homogenous for sure.
From Wikipedia: The demographics of Toronto, Ontario, Canada make Toronto one of the most multicultural and multiracial cities in the world. In 2016, 51.5% of the residents of the city proper belonged to a visible minority group, compared to 49.1% in 2011,[1][2] and 13.6% in 1981.[3] Toronto also has established ethnic neighbourhoods such as Chinatown, Corso Italia, Little Italy, Little India, Greektown, Koreatown, Little Jamaica, Little Portugal and Roncesvalles, which celebrate the city's multiculturalism.[4]
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posey - I have not had a brain MRI, and don’t have a great deal of experience with MRI results, I have had a head CT at the time of the sudden onset hearing loss I suffered last November as they needed a quick look to see if I had a tumor. In your case I am wondering if there is a relationship to your other symptoms as autoimmune issue can show up this way. Have you had a neurology consult? Also possible that this is a vascular abnormality, or a function of aging that is occurring earlier for you. Important to note that these can also come and go, so following is a reasonable course of action.
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Dear ladies, how wide were your margines after lumpectomy? The narrowest I had was 2 mm, I was concerned about it but both my surgeon and oncologist said margin this wide is ok. What do you think?
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posey - I take an 81mg aspirin daily on instruction from both my oncologist and my vascular surgeon.
Kasia - I did not have a lumpectomy, but my understanding is that 2mm margins are acceptable. Here is some information regarding recurrence rate and margin size that confirms this.
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Thanks Special K. I am seeing my primary next week and will ask about the metforun. I do take a statin too so will bring that up.
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I'm in the metformin group. I showed my PCP the study (I was actually in it for a hot second until they realized that one side of my tumor was a smidge too small), and he was interested and said he had no trouble putting me on it as it had been around a long time.
Hey...what are all your thoughts about cbd oil? I bought some after researching it pretty carefully. It tastes AWFUL. When I was talking with my NP friend, she thought it has a lot of good things, but said they worry about the potential interactions with other meds as they don't know how it could affect it.
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I have been trying to lose weight since my 40lb cancer weight gain marathon. One weight doctor prescribed metformin off label, since I cant take many weight loss aids with the tamoxifen. It didnt help, so eventually I stopped. Maybe I shouldnt have!
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Tresjoli2, oh how I can relate. I have an extra 30 pounds that I did not need since diagnosis. The thought of another pill and more side effects is not something I could tackle now. Not fun!
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Tresjoli and Suburbs,
I feel for ya! I've got an extra 20 pounds to get rid of. I'm hoping that daily trips to the pool with my son will help. I try not to blame the Aromasin for the weight gain, but I've been eating better than ever before and that isn't doing the trick.
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Between my 2 surgeries in a row (L mastectomy and axillary nodes) on Dec 26 and Jan 2, plus starting AC on Jan 26, I lost 15 #. My chemo was dose dense AC, and the subsequent nausea made it hard to eat. No problem with nausea on the DD taxol every 3 weeks, but too much dairy brings a different problem- diarrhea. I can see.that weekly.steroids might be much worse for managing appetite and weight gain for sure, for me the gym and a careful diet have kept my weight consistent since January.
Final taxol yesterday- hooray! Now prepping for radiation later in June, but really looking forward to cleaning the.magic.poison out of my system. My MO says I'm the target demographic for Nerlynx if I can handle the side effects, and the recurrence statistics ease my worries quite a bit.
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ladies, so arimidex can cause brain fog, too???
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homemadesalsa - I just noticed you are from Driggs - a friend I've known for more than 45 years just bought land there and plans to design and build (she's an architect) her retirement home there - small world! Congrats on your last chemo - yay!
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kae - brain fog can be attributed to lack of estrogen, so natural, medical, or surgical menopause can also cause it. FWIW - I did not have any problems with brain fog on chemo, Femara or Arimidex, but each of us is different.
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