TRIPLE POSITIVE GROUP
Comments
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Kimmh012 - did you have your SGB injection? If you did, would you be willing to share details - how it went, and if it worked, helping with your Hot FLashes? Due to the Coronavirus, I postphoned mine until mid July. I would love to know. Thx!
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rljes - I have not had my injection. Like you, mine has been postponed with no rescheduled date yet. I will let ya know when I know something. I am working through aromatase inhibitors still. I have tried Anastrozole and Exemestane and I have debiliating hot flashes along with deep bone and joint pain. Muscles spasms/cramps are so bad my feet or hands cramp and become disfigured for about 30-45 seconds, very painful. I asked that the next one be a Name Brand, we shall see.
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kimm - your insurance may balk at the name brand, make sure your MO writes on the prescription "and no other" and makes a notation regarding your side effects, and the fact that the generics you have tried have been intolerable. You may need a peer to peer between your MO and your insurance company. An alternative, if the name brand is prohibitively expensive even with insurance coverage, is Eagle Pharmacy. They are located in Florida and supply brand name Arimidex by mail order for $60 per 30 day supply. When I inquired about name brand Femara the pharmacist told me it was not covered by my insurance and to get it would have been $800 a month. I have the same insurance as coachvicky, and she was able to have name brand Arimidex covered, so it might be worth sending her a PM if you run into any roadblocks and ask her what her MO did to get it covered.
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Thank you SpecialK ... I am not sure if my MO would go back to Armidex or on to Lexazole or Tamoxifen? Also, I have Aetna insurance and so far they have not given me a hard time with other meds that have to be name brand and my MD just writes "dispense as prescribed" or something to that effect.
Thanks again, if i do run into barriers I will reach out.
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Hello everyone.
I'm 45 and was just recently diagnosed with triple positive breast cancer. I believe I've had the tumor for several years now and it was missed by a previous mammogram several years ago because of my breast density. This time, it was caught with an ultrasound and MRI at 3cm. I think back to all the things that I could have done to have created this cancer in me and its so depressing (Thinking about the abundance of sugar, birth control pills for 15+ years, HPV, IVF treatments, too much wine, stress, hypothyroidism, etc. etc.) This diagnosis has definitely made me re-think the way I've been living. Since I got the news, I have switched to being a vegetarian, and omitted all sugar and alcohol. I'm also working with a naturopath to help find complimentary therapy. I start chemo (8 rounds) this Friday, followed by surgery, radiation, and herceptin for 9 months, and then hormone blocker for 5 years. I'm really happy to see that many of the women in this group have been posting for 10 of so years. This gives me hope that I can survive this. I guess you all are a testament to being able to survive this.
I'm so glad I found all of you!0 -
Dear Lemonade - this is a great place to be. Very supportive women. Your treatment is pretty standard for 3P ladies.
This is a time to be good to yourself. Not beat yourself up for your past decisions. It's easy to look back and say, "if only" but for every one of those things you mentioned, there are those who didn't do them and still have cancer. If changes in habits make you feel more in control, by all means do them. But don't look back - just forward. Herceptin has been a real game changer for us and you should be optimistic about your future.
Post your profile and after each entry, make it public. I also suggest you look at other forums. My "starting chemo on ...." has continued to be close. Once you decide on your surgical plan, you can join a forum and gets tips there too. Stay close.
Taco
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Thank you Taco. I know you're right about looking forward. I'll definitely be dropping by some of the other groups to listen and learn.
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welcome to the board, sorry you had to join
I was diagnosed at 44, just finished Chemo (TCHP) 3 weeks ago and my surgery is scheduled for next Friday.
In my case, the cancer was genetic. Right now I'm just planning on staying healthy and happy for as long as I can.
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Lemonade -
I am also on TCHP - I have Round 4 on Friday. 2 more to go after that and then I'm having a BMX in August. I am 54, but mine was also missed in 2 mammograms. Thankfully, they were just a month apart (they were checking on an unrelated issue that ended up being nothing). I happened to do a self-exam and felt a lump and said something. Thank goodness, because the 2nd mammogram was after I felt the lump and STILL showed nothing. They did an ultrasound ONLY because I said something, so they wanted to "check." Mine was 2.4 cm, with one lymph node positive also - they biopsied both the tumor and the lymph node because they could visually see involvement on the ultrasound.
I also immediately gave up sugar completely, and any alcohol (although I was only an occasional glass of wine person anyway), switched to modified keto on the advice of my PCP and my naturopath. And I also do a fast starting the day before chemo and chemo day. There is lots of research there, and I have had no nausea or loss of appetite. My naturopath has me on all sorts of supplement protocols, and I do believe they are helping. Mostly it's about support for my body during chemo. I am happy to report that at my mid-cycle check with the breast surgeon last week, the ultrasound showed that the tumor has reduced by over 50% and they can no longer see visual evidence of cancer in the lymph nodes. Herceptin and Perjeta are game changers there for those of us that are triple positive.
You are doing all the things to support yourself and you will get through this!
Kris
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i swear I'm going to smack my Surgeon. It's too late to do anything so, all I'm doing is bitching but, neither my MO or BS would do a mid Chemo or post Chemo MRI. Originally I was supposed to get a post Chemo MRI but, when I told the BS I was doing a BMX due to genetic mutation he said there was no point in doing anything MRI, as the only reason would be to see if the DCIS/IDC shrunk enough for a Lumpectomy.
I just asked this question in the Feb 2020 Chemo group but, does anyone know what determines Chemo or HP effectiveness? I used to think it was all the size of the tumor but, that's not the case. Is it just a crap shoot on your bodies reaction to Drugs/chemicals?
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My breast surgeon did a mid-cycle ultrasound (not an MRI) to check tumor and lymph node response mid-cycle. I had a breast MRI only before treatment - they mostly wanted to be sure that what they were seeing in the ultrasound and from the biopsy was ALL that was there. The MRI confirmed that, along with NED on the left side. The mid-cycle ultrasound shows over 50% reduction in the tumor and NED (visually) in the lymph nodes. That keeps them on the plan of doing the dye mapping during the BMX to identify the sentinal node and only taking 3 nodes initially. If that surgical biopsy shows NED at least in the 3rd node from the sentinal node, they won't take any more. This will also determine if I need radiation or not, after surgery. I have a consult with the RO next week.
Kris
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lemonade - don't beat yourself up over what you may have done, the fact is that breast cancer happens to yoga practicing, organic eaters, who breast fed their babies, didn't take birth control, and are stress free at the time of diagnosis. To me, the most critical risk factors are that you are a woman and you have breasts, but men get breast cancer too, so there's that. Conversely, we all know Twinkie eating 3-pack a day smokers who never get cancer... this is not your fault and you did nothing wrong. This whole thing is a crap shoot, a mutation of DNA, that allows cancer to grow. I do also think that adopting changes after diagnosis can be a good thing, it offers a feeling of controlling what you can, and that can be helpful physically and mentally. I consumed alcohol infrequently so that was easy to give up, and I exercise more and have adopted an anti-inflammatory diet. I also take 81mg aspirin each day and take metformin - these are part of a protocol aimed at reduction of inflammation in the body that has shown promise. I participated in a study that looked at how meditation is helpful to breast cancer patients and have incorporated much of what I learned into my life - it helped me separate the wheat from the chaff, and as a result I worry far less and say no to things much more easily. All of this makes me feel more proactive, and that alone is worth something. Taco is right - move forward from today and don't look back. I also think that for many of us triple positives the cancer has not been in the breast nearly as long because the Her2+ aspect causes more exponential growth. My 2.6cm tumor was never seen on mammography. I actually went back to the radiologist after I was diagnosed to let him know that the US he ordered, because I had a palpable lump but no correlating finding on the mammogram - and subsequent biopsy he arranged, had most likely saved my life. He asked me to come back to his room of screens and he pulled up my mammogram again now that he knew I had breast cancer an exactly where it was - nothing, nada, zippo. I could roll the tumor between my fingers, but because I had extremely dense tissue - even 9 years after surgical menopause - it was never seen on any of the mammograms I had faithfully gotten every year. We do what we can with the information we actually have, the rest is speculation. This is a great group, we are here for you!
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Lemonade: I am a vegetarian teetotaler who exercises and meditates regularly. Cancer sucks and it is random. Don't beat yourself up that you caused it.
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morrigan_2575 - I'll be praying for a successful surgery and healing for you. Thanks for welcoming me.
wahoomama87 - Thanks for sharing your experience. That is excellent news - your tumor shrinking by 50%. I really hope mine does to. I can feel my tumor (its hot and prickly) and I can't wait for it to be gone! I'm not sure about my lymph nodes yet. The surgeon has said she will do a sentinel node removal as part of the lumpectomy. I will also be fasting. I am gonna try to do 48hrs before the chemo and then 24hrs afterwards. That's 76hrs no food (although I'll likely add some green juices in there). Do you take anti-nausea pills? I've been prescribed some to use the day of the chemo, and thereafter but I may hold off on taking them that day to see if the fasting helps relieve those side effects. I'm curious what you are taking as chemo supports from you naturopath. I'll be taking low-dose naldextrone, berberine, B-complex, astralagus, broccoli sprouts, reishi, milk thistle and L-glutamine (starting day of chemo and stopping once chemo ends). As a caveat to anyone reading this - You should definitely work with a licensed naturopath before you consider taking these items yourself. My naturopath selected these based on many factors relevant to me that may not be relevant to someone else's situation.
SpecialK - Thanks SpecialK. I also have shown no lumps in the 2 mammograms I've had, while the ultrasound clearly showed one. I will be asking for ultrasounds moving forward. I read about the children's asprin in Jane McLelland's book How to Starve Cancer. She used it with the premise that it would stop any loose cancer cells from attaching themselves to an organ. I was thinking I would also do this once all the conventional treatment ends. I like the idea of the Metformin too. Its really hard to watch blood sugar all the time with every meal. Even eating vegetables I find it's hard. I love to eat the root vegetables roasted, and I have to wonder whether they are causing a spike in blood sugar.
YeslamaDragon - I think I'm done beating myself up now. Feeling the love from all of you
PS: I also love to exercise, I just overindulged sometimes in some of the other legal addictive things. Anyways, that's the old me! Onwards and upwards! 0 -
Lemonade -
I do a 60 hours fast. My chemo day is Friday, so I fast Thursday and Friday, and resume eating on Saturday. I'm also VERY low carbs (modified keto) and NO sugar, so it makes fasting easier. On fasting days, I do have bulletproof coffee or tea, and homemade bone broth. I make different kinds - veggie, chicken, and beef. I don't take anti-nausea pills, but they give me something in my IV before they start the infusion - that's the first thing I get. In terms of supplements, I'm on a multi-vitamin, a B-complex, an omega-3, turmeric, Selenium, Boswellia, L-glutathione, a probiotic, turkey tail, and high dose Vitamin C. I also use L-glutamine powder, but just on chemo day and the 3 days after. However, I do a triple dose on those day (normal is 1 - 2 tsp a day) - I do 2 tsp, 3 times a day, for those 4 days. I walk every day and make sure I'm getting sun (no sunscreen) for 20 - 30 minutes a day for Vitamin D - that is SO important for both the chemo/cancer recovery and also for the COVID situation - lots of good data and studies there!
Glad you added that about the licensed naturopath - I completely agree. I have one, plus my PCP (who is integrative) and my chiropractor all on my "team" with this - and all consulting with each other, and they have all consulted medical professionals who are considered experts in the cancer management/integrative medicine field.
Kris
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why did you guys fast? Prevent Nausea or some other reason?
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Hi everyone. It’s been a long time. Jumping in to the deep end here as I saw a question about fasting and some lifestyle changes while in treatment. There are so many ways to approach these choices and we are all different. My advice is simple as it’s been so long since I have done the research and things change rapidly. Things once considered beneficial can become forbidden overnight. Whatever you do, the goal is to get through treatment. If that means living on saltines and toast, then that is what you do. If fasting is your thing, more power to you. Check with your doctor before making any draconian changes. You might need to take small steps to implement change rather than going cold turkey overnight.
I recall starting chemo with a box of pills to fight every possible symptom. The prescriptions kept piling up. Some helped and some did not. You may feel ok and you may feel awful. If you feel awful, mix it up and try something different. Again, just get through it the best you can and don’t beat yourself up.
Frankly, I can’t comprehend how much more difficult treatment must be during a pandemic and economic crisis. Strangely, the last few months of lock down have brought back memories of treatment in 2017 being immuno compromised and stuck in the house. I’ll see my oncologist next week for my 3 year anniversary of having completed chemo and surgery. It feels like a lifetime ago and it feels like yesterday.
One thing I can always remember is that the wonderful group here was always so supportive and had lots of ideas. Throw them up in the air, mull them over, and chart your course. Things get better. They really do. As you buckle your seat belt, keep in mind that you are not alone. Sending lots of encouragement and positive energy.
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Morrigan_2575 - My medical doctor (and a friend who is an MD) both recommended and supported a modified keto diet for fighting cancer and supporting my body through chemo. The research (very current) shows a good response when you cut out sugar and high carb foods. Cancer feeds on sugar in your body, and by doing so, you deprive it of its main source of energy and growth. I am also reading a great book about this called the Metabolic Approach to Cancer.
The fast in and around chemo day has several purposes - first, it helps prevent immediate side effects like nausea. I take nothing for that, other than a small infusion of anti-nausea meds on chemo day. My appetite has been great and I've had no issues with wanting to eat. Second, there is really good research from several universities about the efficacy of fasting around chemo infusion. Your body essentially shuts itself down metabolically when you fast, closing down its cell receptors. Except the cancer cells - for some reason, they open up MORE - essentially searching for an energy source, since you are depriving it. So on chemo day, the thought is that it makes the cancer cells more receptive to the chemo infusion, but protects your other cells. I have definitely had a more minimal side effect situation, relative to what I've heard from others. Not sure if that the fasting, or the keto, or the supplements, or all of it, but my routine is working. I still get some, but they are largely completely gone by the start of week 2, and I have a normal week then and week 3 before I have another round. It helps me feel more normal and I have that break and reset. My labs have all been really good too. I also can report that my response to chemo has been excellent. With 3 round behind me, I have had an over 50% reduction in my tumor size and they can see no more visible evidence in the lymph node that was positive. I'm very much a "natural approach" person when it comes to medical treatment, although I do not eschew modern medical treatment by any means - obviously since I'm getting chemo! But I look for that natural approach first and make decisions about what can be helped or healed that way either on its own, or in combination with medical treatment. Our bodies have an amazing way of healing and there are lots of good supplement out there. Food is a good healer when you use it properly. And things like essential oils, etc. So I'm doing ALL the things in approaching this. My main goal is to also fully support my body so it can get through this with minimal long-term damage and so I can bounce back as quickly as possible once I'm through chemo. Same with the follow-on surgery. Happy to answer any question - you can PM me. Also happy to talk via phone.
Kris
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Interesting. None of that was told to me. I did some research on sugar but my doctors basically said that there's no firm evidence.
I do intermittent fasting (8x16) so I actually would fast before Chemo from 8pm night before to 6 pm day of Chemo. My Chemo day was pretty much 8-2:30 at the center. Once I got home, I would relax for a bit so I didn't end up eating until dinner time.
I never had nausea, still have the original bottle of pills they gave me after cycle 1. The lack of appetite came from the stupid mouth issue. I'm hoping it ended with Chemo and wasn't related to HP. 🤞🏻
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Yes - so you're basically doing what I'm doing except I don't eat until the morning after chemo. Multiple medical providers told me about keto/cutting sugar, and then I read that Metabolic Approach to Cancer book. Lots of research in there. It makes sense - just on a basic level - when they give you a pet scan they literally use a sugar based dye that they inject in you to find the cancer cells and make them light up. So sugar finds cancer and cancer finds sugar! I am doing this through my treatment and then we'll see if I relax a little. Honestly, it's a small sacrifice, and I feel really good (as good as you can feel on chemo) and like I'm doing something proactive. And certainly giving up sugar is good on a lot of levels. Same on the nausea - have never needed the meds they gave me. Sorry about the mouth issue - I've had some dry mouth but I've done some proactive strategies to avoid it and it's much better. Hoping yours will clear up now that chemo is done for you. I've got two more rounds - I just had Round 4 today. Eagerly anticipating being done with it!
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Kimmh (and Special)
I worked thru a support person at my Center for the name brand drug (first Arimidex and the Aromasin).
I did two generics for one month each tracking the side effects and then I could receive the brand name.
The outcome is to complete the daily estrogen blocker whatever the cost. End results is that a name brand is cheaper than a second round of cancer treatment.
This support person would randomly call me to make sure that I was taking my Rx. She said over and over that every woman she encounter who stopped their meds and developed a second cancer regretted the decision to stop. She said I don't want that for you. I think I have hung in there and still do because I did not want to disappoint her, LOL. I have one year, nine months, 21 days remaining on Aromasin.
On a different topic, I have had a lot of hand pain and trigger fingers from the estrogen blockers. I was getting ready for another hand injection. At my 6 month Oncology appointment (really seven months since I delayed it due to the virus), my magnesium was low. On review, it has always been low since diagnosis but this time I was off the low range. My Oncologist started me on 400mg of a magnesium Rx. I only have one finger catching and my pain area as well level has significantly decreased.
Go figure. Over $2 million billed to insurance since diagnosis. The magnesium Rx is not covered under my insurance. It is less than $10 out of pocket for a 90 days supply. Once cannot make up the lack of logical decisions from insurances in cancer treatment.
Vicky
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thanks Coach Vicky, I had no problems getting Armidex name brand filled yesterday ... I die notice cash price was $2,634 for a 30 day supply, I paid $0.00 as I meet my high deductible already. Once I reach my deductible, everything is paid 100% on my Aetna Plan... Onc told me start on June 15th, since I stopped Exemestane on the 1st. My debilitating bone and joint pain continue, it has not lessened since stopping, on a side note, my hot flashes has increased ... I am not normal, LOL...
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"Over $2 million billed to insurance since diagnosis. The magnesium Rx is not covered under my insurance. "
😲😮😲
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I would like to know what everyone, if needed, is taking for insomnia? I am handling letrozole pretty well, the trigger thumbs have resolved, hot flashes diminished, energy level is good except for lack of sleep. I just really need to sleep.
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Annie,
I'm taking Melatonin about a half an hour before I go to bed. It works OK. Other meds I've taken to address insomnia: Doxylamine, Ativan, Xanax, and Ambien. My doctors wouldn't prescribe Ativan, Xanax, or Ambien for long-time use. Doxylamine succinate is in some formulations of Unisom and in Nyquil. It worked for me in the past. Good luck!
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annie - have you tried melatonin? My BS really encouraged it because many breast cancer patients have a lower than average level. There is some indication that it is helpful from both the sleep front and the cancer front. It is a good idea to titrate up from a lower dose up to 10mg (his recommendation) if you tolerate it, but it can cause some vivid dreams if you start too high. I can’t personally testify as I have not tried it. I do have sleep issues that pre-date breast cancer, but haven’t taken anything to help with it. I am a person who doesn’t require a lot of sleep to function decently, while also knowIng that sleep is important and restorative - it’s an area I need to work on, lol! Here is a link. It also goes without saying that sleep hygiene is important - dark cool room, no tv or phone, etc. - I also need to work on that..
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My naturopath has me on melatonin nightly and also magnesium. I'm sleeping well, so I'm assuming it's helping!
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Hi all,
I am new to this Board and hoping to benefit from your wisdom if any of you have had a similar experience or may have seen any research, etc. I was diagnosed in November with a large, grade 3 HR+, Her2- (IHC equivocal, FISH-) tumor with at least one malignant node. I jumped right into neoadjuvant chemo (AC-T) plus a clinical trial immunotherapy drug plus placebo. I had a partial response to chemo before a double mastectomy and implant reconstruction two weeks ago. The pathology came back as expected-a smaller, but still there tumor and a single malignant node. Once again, the Her2 was equivocal and sent for a FISH test but my oncologist assured me that it would be very unusual for it to test positive after testing negative.
You can probably guess the next part: the Her2 came back positive but low. I am slated to talk with my MO Wednesday about next steps, but her initial guidance was to do another (milder) course of chemo and begin a year of Herceptin and possibly Perjeta. I am ready to do whatever is most likely to get rid of this nasty beast, but wondering what questions or concerns I should raise with her? I still have my port and I was fortunate to have few side effects from the first go at chemo outside of hair loss and mild neuropathy which has resolved.
Thank you all!!!
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I can't speak to AC+T. I just finished round 4 of 6 of TCHP (which is the standard protocol for Triple Positive) - Taxotere, Carboplatin, Herceptin, Perjeta. I'll finish in July and then have my surgery. And will continue Herceptin for sure for up to a year. They will decide about the Perjeta after surgery. I will say that I've had a great response so far - my tumor has shrunk by over 50% after 3 treatments and they can no longer see visible evidence in the one lymph node that tested positive in my biopsy.
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I take Melatonin for sleep issues. The chewable are fantastic to keep by your bed in case you wake up in the middle of the night and need to take some - no need for water. Don't take too much as it can cause insomnia if it is taken at too high of doses
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