TRIPLE POSITIVE GROUP

Taco1946

Rababasa - I sent you a PM.

deni1661

Hapb, I'm glad the Herceptin is not causing you big problems like before. I hope the back pain continues to be tolerable. Praying there are no changes in your echo next week so you can finish up.

Today is a beautiful day here, I'm heading out for a walk. Shoulder recovery is slow but making progress.

I wish you all a wonderful day 😊

kae_md99

ladies,im on arimidex ( accord) . i have itchiness and fatigue? my last herceptin was 2 weeks ago... i wonder if the cumulative effects of herceptinis causing the fatigue... also when is the best time to get the eya checked after herceptin? my eyesight is worse now...thanks

shelabela

hapb, glad you are holding on. You are stronger then you think. You can do this.

deni1661

Kae, I had fatigue on Arimidix and since switching to Letrazole. The fatigue was worse when I was getting Herceptin. I'm always tired, some days it is worse than others. Part of my fatigue could be that I can't sleep because of pain at night. I sleep for 2 hours and then the pain wakes me up. I fall back asleep but wake up every hour or so to switch sides. I can't remember the last time I slept a solid 8 hours without waking up. I have learned to sleep when I can. It's not ideal but I have adjusted.

I did not have itching? I'm going for my annual eye appointment in a few weeks, it will be interesting to see if my vision has changed!

jumbledbamboo

Hey! I am going to give this a watch and get back to you!

For right now try not to doubt yourself. We cant change the the past

moodyblues

Ladies, I had my first mammogram since my initial diagnosis of 2/22/17 and there were no changes.  I felt well emotionally the day of the test, already preparing myself of the inevitable call back to the room because of the cyst- I made a mental note of that so as not to be freaked out or blindsided when the called me back again.  I was in a good place mentally.

WHAT A FIASCO it was!!!  I had my diagnostic mammo and went to the holding room where I waited with another lady, we began to discuss how we were both going to be called back for an US (ultrasound) and discussed our breast history.  She never had BC but, did have a lumpectomy years prior because of a growth of some kind and she had a breast lift.  She was called back for what we both thought was an ultrasound.  When she came back, she said they had re-mammo'd her breast and we resumed talking.  They came back in again and told her that she was good to go and I heard the Mammo Tech tell her how much better the SECOND SCAN looked compared to her first scan and that is when she asked about her US that she had requested.....silence.....  The patient came back in the room and said they made a terrible mistake and had mixed up her scans with another patient's mammogram.  She covered her face and said "it is so bad, my breast is riddled with scar tissue, what IF they they told another patient there was a problem with her breast when they had my scans by accident"?  I then got called back for another mammo, the Mammo Tech with tears in her eyes said that she made a bad mistake and was very sorry-she had mixed up my scans with someone else's scan-I told her to take a deep breath and not freak out.  She told me to wait a moment and left the room.  When the Tech came back in she was wiping away tears and was really rattled and we were doing another mammo.  Finally I stopped her and said "Look, there was a mistake...you caught it.   START OVER FROM SCRATCH, let's get this right.  Calm down, take a deep breath and put my scans with my file and paperwork and take her scans and paperwork and put it in her file.   A mistake was made- sad yes, bad yes but, fixable". 

So they tell me my mammo is good but, where is my US that I get every year?  I asked to speak to the person who reads the scans and he came in.  I questioned why not an US, I get one every year?  He didn't see the cyst, he said.  I questioned the accuracy of that information.  YES, I DID ASK if he looked at it really good with my BC history.

I called my nurse navigator and she is having me get my scans from that facility and then they will (at my current facility) look at all of the scans and compare them from previous years to be sure that they have 'my breast' scans and not the other patient's scan.  How crazy is that?  IF IT WEREN'T FOR THE PATIENT MENTIONING THE ULTRASOUND.....WE WOULD NEVER WOULD HAVE KNOWN OF THE MISTAKE.  SCARY!

I know this is a long post....  crazy isn't it?  Mistakes can be made and are made every day, I thank God that the patient mentioned the US or we would never have known.  The Mammo Tech said our breasts looked identical, she said that the doctor who read the scans didn't even notice that the breasts differed (two different patients-two breasts).  I think this was in attempt to minimize the mistake. 

VVV

"Healing Cancer From the Inside Out" is psuedoscience. The only thing that will happen if you treat cancer with alternative methods instead of current medical standards is that your cancer will progress. Anything or anyone that tells you otherwise is irresponsible, manipulating the emotionally vulnerable, and probably has literal people whose deaths can be attributed specifically to the crap they peddle and the only reason any of it exists is in the first place is for profit. Here's a recent article about a youtuber who disregarded medical advice and claimed diet cured her, her cancer spread and eventually realized she was wrong. http://www.independent.co.uk/life-style/youtube-vegan-cured-cancer-blogger-liz-mari-died-a8220141.html I personally know a girl who when she was first diagnosed with cervical cancer, she thought she could treat it with alternative methods. When she was dying from cancer she made a video and very specifically said the reason she was dying is because she didn't get actual medical treatment right away. She had something that was treatable and using holistic oncologists or whatever they call themselves just let the cancer spread. I get it. Everyone wants to do everything they can and it's easy to think that there's some special secret we can find that will help us but there's not some great conspiracy in the medical profession where people know how to cure cancer but everyone's keeping a secret. That's ridiculous.

ElaineTherese

Thank you, JVP. If successful treatment of cancer involved ONLY alternative methods, employers and insurance companies would recommend them. After all, alternative methods are cheaper than what medical science proscribes, and employers and insurance companies would love to save money on treatment. That is not to say that breast cancer patients shouldn't use alternative approaches to supplement standard treatment, especially for the treatment of side effects. But, advocating alternative ONLY is irresponsible.

ElaineTherese

Thank you, JVP. If successful treatment of cancer involved ONLY alternative methods, employers and insurance companies would recommend them. After all, alternative methods are cheaper than what medical science proscribes, and employers and insurance companies would love to save money on treatment. That is not to say that breast cancer patients shouldn't use alternative approaches to supplement standard treatment, especially for the treatment of side effects. But, advocating alternative ONLY is irresponsible.

deni1661

Moody - OMG I can't believe what you went through! I myself have often thought about the accuracy of tests and think we're all at risk of misdiagnosis. Thank God the other patient informed you of what was going on. I am a little concerned that the person reading the scans didn't see the cyst or think the US was necessary. Even worse is they thought the breasts looked identical? That's insane; none of our breasts look identical especially considering the other woman had scar tissue! Can your nurse navigator request an ultrasound at a different facility? I would want peace of mind.

I'm so sorry you had to go through that experience. Kudos to you for the calm approach and mental prep going into your mammogram! I admire how you handled the situation and showed compassion to the tech; she obviously felt bad. However, it is her job to ensure accurate records so I would have lost trust in the facility and go elsewhere in the future. The last thing any of us need is added stress regarding our scans.

Please keep us posted on the outcome of your current facility's assessment of the scans. I'm sure you'll get an all clear and relief that you had another set of eyes looking at the scans.

deni1661

Moody - OMG I can't believe what you went through! I myself have often thought about the accuracy of tests and think we're all at risk of misdiagnosis. Thank God the other patient informed you of what was going on. I am a little concerned that the person reading the scans didn't see the cyst or think the US was necessary. Even worse is they thought the breasts looked identical? That's insane; none of our breasts look identical especially considering the other woman had scar tissue! Can your nurse navigator request an ultrasound at a different facility? I would want peace of mind.

I'm so sorry you had to go through that experience. Kudos to you for the calm approach and mental prep going into your mammogram! I admire how you handled the situation and showed compassion to the tech; she obviously felt bad. However, it is her job to ensure accurate records so I would have lost trust in the facility and go elsewhere in the future. The last thing any of us need is added stress regarding our scans.

Please keep us posted on the outcome of your current facility's assessment of the scans. I'm sure you'll get an all clear and relief that you had another set of eyes looking at the scans.

deni1661

Hapb - it would seem the Herceptin is the culprit for your tiredness. I remember being told that the Herceptin wasn't to blame for my fatigue or tailbone pain, that those were side effects from the AI. I still have both side effects so I really don't know what to think.

I will check out that movie, sounds interesting. I like to think that an integrated approach to cancer is better for our bodies but again, how do we know for sure what works? I agree with Elaine that using some alternative methods can help offset the damage from harsh chemicals that are part of treatment i.e. diet, acupuncture, essential oils, supplements, etc. We must have complete trust in our medical team to provide us with the best options to treat our individual cancer. My MO told me often that building the immune system is the best way to heal the body. He also explained that triple positive was too aggressive and the drugs were necessary to give me the best chance for survival. I feel I made the right choice and took advantage of integrated therapies to improve my overall health. I am much healthier than I was before diagnosis, even with the SEs, so I choose to believe my body is no longer an appealing environment for cancer to grow in!

Magari

Deni1661 - Have you spoken to your MO about your nighttime pain and sleeplessness? My oncologist believes that being able to rest comfortably and get enough sleep is extremely important to my healing and actually suggested meds to help with both pain and sleep issues.

I take Tylenol 3 or Norco for pain, depending on how bad it is. And when Ambien alone was still not getting me more than a few hours of sleep, I was prescribed Ativan to take along with it. I am now getting at least 6-7 hours of pretty solid sleep, and yet still do not feel "hung over" from the meds in the morning.

I was told that my current situation is relatively short term and temporary and that I need all the help I can get. Also that there was no concern about drug dependency/addiction. So I accepted the help and am grateful for it!

I am still experiencing some fatigue in spite of it all, but that is to be expected at this stage of my chemo (5 rounds of 6 completed, TCHP.)

VVV

I don't really know much about the statistics around AI's. If you have doubts about benefits, talk to your oncologist about it. What you shouldn't do is trust the statistics from something that's already shown itself to be spreading lies.

deni1661

Magari, thanks for the suggestions! My MO has offered several meds but I declined because I didn't want to put more chemicals in my body. I have resorted to taking Advil PM which allows me to sleep for about 3 hours before waking up and then I seem to sleep in 1-2 hour increments. I am in bed about 8-9 hours total but maybe get 6-7 hours of sleep. I did go on a round of steroids for my tailbone pain last June which cut the pain in half. I see my orthopedic surgeon for my shoulder surgery follow-up next week so I am going to ask for his suggestions on the tailbone pain. I just started using essential oils to see if they can help the pain; so far no improvement but it's only been a few days. I diffused lavender at bedtime last night and it made me really drowsy so I fell asleep a lot faster than normal.

I agree with you that I should find a solution to ease the pain so I can sleep. Restorative sleep is very important to good health!

deni1661

Hapb I agree, your body is fighting all the harder to recover after everything you have been through. I wish there was more consistent info to help us navigate through all this. Hang in there and track positive!

moodyblues

Denni, yes it was crazy and I no longer trust that facility with doing my mammograms from here on out.  I handled the situation calmly but, in the last few days have really thought about the situation and feel like this really could have ended badly.  I will pick up the scans and the new facility will review everything.  I will ask about the US as well when I give the scans to them.  I will keep you updated.

Hapb, I did end up having two mammograms that day but, I still feel uneasy about them having the correct scans with the right patient, I mean the Tech was visibly upset, how do I know she straightened out the mess 100%.  I understand about mistakes, I truly do and so I am not mad at her ...just questioning the results.

Photogirl81

hello Ladies,

HapB, let me share my point of view about the different approaches. When my good friend from Australia was diagnosed with BC, she and her husband immediately started seeking all alternative options. She also had chemo, but she completely changed her diet (although she was always pretty healthy), tried different natural supplements, pressed her own wheat-grass juice, etc... they spent so much money for her to go to a German clinic of alternative medicine (almost the cost of an apartment)... she spent a month there receiving all kinds of treatments. Just two months later she suddenly died. Oh, and not the chemo, neither the BC killed her. It was those treatments... Cancer took her away way too fast. While you are still here, thanks to your strength and fight, and also thanks to modern medicine.

Modern medicine gave my mom 10 years since her dx of ovarian cancer. She got so much chemo during the years that we lost track of it. We stopped counting after 65 treatments... by now I am sure it is around 80. It is insane, but she is still here, fighting, baking cookies and helping me cope with my stuff. Btw, they gave her 6 years tops...

Moody, OMG! Hope all will turn out fine in the end and your cyst is gone. It can happen with cysts as I've heard.

Today I had my first mammo since dx (waiting for 2 weeks for the results), aldo had a chest x-ray which came out perfect, and an abdiminal US which was also all clear. My blood test was perfect, but still waiting for the marker results. But I am very pleased with the results so far. Today was also the one year mark of my first chemo treatment... I still remember how scared I was, not knowing how I will do this. My husband put on his UnderArmour T-shirt with "Fight, fight, fight... I will" written on it, and I put my "superman" Tshirt on... and it all started. I am grateful that I managed to survive this past year, more or less staying sane in the process.

Hugs to you all!

Photogirl81

hey, although you cannot turn back the clock, it is never too late. I am sorry I misunderstood, I have not seen the movie. I just saw so many articles/"news" about alternative medicine saying we should ditch modern medicine, that I immediately assumed that's what the movie is about. I am sure that a healthy diet can do wonders to our bodies. I need to start acting on this, as I am not yet doing all I feel I should. (I need more veggies, and more exercise)

coachvicky

@MoodyBlues ...

You turned your experience around.

You were very kind to the tech ... I kept reading your post wondering when the police were called after all the women affected place the tech in the mammo machine and turn off the power. So glad it was not that ending!

Vicky

moodyblues

Hahaha Vicky!  What a bad girl you are. 

moodyblues

Hap, I will be handling the situation, not sure in what form.  I don't want the Tech to be fired though, all of us make mistakes along the way.  I worked at that facility and a mistake can equal a loss of a job. 

moodyblues

Photogirl, I am believing for the best!

deni1661

Photogirl congrats on your anniversary and the great results you received so far! That is great news. Praying your mammogram results are equally fantastic 😊

deni1661

Hapb I agree with your frustration about all the drugs being prescribed for us. It can't be good for our bodies. I am not opposed to taking them if there is no other solution, especially if quality of life is impacted. Like you, I want to rely on good nutrition, exercise and stress management to make my immune system as strong as possible. I agree with the philosophy to treat the cause, not the symptom. Drugs don't always do that. Take pain pills - they take the pain away but they don't cure the reason for the pain. I'm learning about different methods to alleviate pain at the source through eating certain foods, acupuncture, supplements, oils, etc. I'm not sure what or if any of these will work but I'm willing to invest the time to try.

Have you tried essential oils to alleviate anxiety or to improve mood? I'm not an expert but I've read that certain oils can help. It's important that our mind and bodies are at peace - my MO always told me stress of any kind is not good for cancer patients

Blownaway

HapB - I am WAY post meno, plus have had a complete hysterectomy. Tamo was prescribed to me instead of AI due to previous osteoporosis dx. I took it for 3 years but am giving myself a 3 month break since Thanksgiving. Seeing a new onco tomorrow and will probably get spanked and put right back on it.

VVV

Saying diet can cure cancer is a lie and getting people to believe that kills people who listen. Naturopathic cancer "doctors" are basically the definition of evil if they treat people while encouraging them to forgo actual medical treatment. Until 2 years ago, my state didn't even regulate people who called themselves such which meant that they needed no education to even practice. I'm not sure every state's regulations these days but I'd imagine there's other states where they're unlicensed. I'm not going to keep talking about this. I'll leave these links here:

The Hidden Cancer Cure https://sciencebasedmedicine.org/the-hidden-cancer-cure/

The Natural Cancer Cure Narrative https://sciencebasedmedicine.org/the-natural-cance...

Alternative Medicine Kills Cancer Patients https://sciencebasedmedicine.org/alternative-medic...

deni1661

Hapb - I think seeing a naturopathic doctor is a good idea. I saw one while I was in treatment. She put me on a regimen of supplements, suggested complimentary therapies, stress management, etc. It would be helpful to know which med is causing problems - I'm assuming a naturopathic would be able to provide advice. For example, my naturopath prescribed Boswilla supplements for pain so I could get away from taking so much Advil. Unfortunately the Boswilla gave me a headache so she switched me to Curcumin which did offer some relief.

I feel awful for all the struggles you are going through and really hope you find relief soon.

SpecialK

hap - not sure you can state with authority that 100% of patients are harmed by using AI drugs. If I participated in the essential oil study I actually would be harmed as I am violently allergic to one of the ingredients used - I happen too know that because I have been tested, but others may not necessarily know they are allergic until they have had contact with the oils. All of these studies carry risk, even ones that seem harmless. I live in one of the states where naturopaths do not have to be an MD.