TRIPLE POSITIVE GROUP

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2014

    and I'm going out to buy fish oil today. Been researching brands. Gonna nip those triglycerides in the bud and see if I can get them down with some big doses.

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  • Girlstrong
    Girlstrong Member Posts: 438
    edited March 2014

    happy Friday girls!!  For those of you that had chemo, how long did it take for your blood work to normalize. I ended chemo in Dec and my WBC, RBC etc are all over the place. My MO isn't worried or surprised by this??? I also have vitamin D at 23.4( don't know units). I am taking an OTC supplement but should I do more? I live inMichigan so taking a walk outside isn't an option right now. 

    specialK: good luck with your surgery; sending warm thoughts and a hug your way. 

    Fluffqueen: congrats on 3 years!!!!! Awesome. To PET scan or not to PET scan is a hard choice. Right from the get go I was told that there are no routine scans unless there are presenting symptoms. Also, a PET scan picks up a lot of other stuff and not just Cancer.... Completely understand if you need peace of mind but also rest assured that your blood markers are fabulous:)

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  • lago
    lago Member Posts: 17,186
    edited March 2014

    Girlstrong my PCP tested my blood 7 months PFC and my white counts were still a bit low. He said it was pretty normal because of treatment... Not sure if still doing Hereceptin had anything to do with it as well. My D was in the single digits before diagnosis. We got it up to 79 (actually above high normal). Now it's back to 24. That's still normal but low normal. My new PCP didn't seem to be concerned but I will be discussing this with my onc.

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited March 2014

    GS, my Vitamin D was 30. This after daily units of 10,000 for 6 months. It was 14. I now take 5,000 units a day. I need to get a D check soon. But it doesn't hurt to take D. It's very hard to over dose. And I am almost 2 years PFC and some of blood work has yet to stabilize- in my case magnesium. Everything else normalized in time. Good luck. 

    Fluff yep. Get the PET scan. We will ALL feel better! LOL

    Specialk thinking of you. 

    Much love to all. 

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  • Jennt28
    Jennt28 Member Posts: 2,021
    edited March 2014

    rozem - I think they do always test those complex cysts "just in case". But my gynae assured me the vast majority of tiny ones are benign and th research papers do confirm that.

    Is your surgery scheduled?

    Jenn

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  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited March 2014

    Girlstrong my white count took 3 to 4 months at least to stabilize in the low-normal range.  It is now in the normal range.  My red count (hemoglobin) took well over 7 months to improve to where I was no longer anemic.  

    Vit D - my onc likes it between 70 to 100, if I recall correctly.  I take 4000 IU Vit D daily. 

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  • Pbrain
    Pbrain Member Posts: 863
    edited March 2014

    Rozem, ovarian cysts are very common.  Luckily, ovarian cancer is not.  They take them out a lot of times because they can be very, very painful if they get inflamed, and they are just not a healthy thing to have (look up polycystic ovarian syndrome--all your hormones whack out).

    Jenn I'm with you about not feeling right and kind of like a pathetic little wuss of a woman after all the things I've been through.  I'm kind of wondering about seeing a therapist...but Lago, you are so reassuring that it is normal to be so shook up even after less than 1.5 years of diagnosis.  Thank you for that.  I need to hear it.

    And on the bone drugs, SpecialK is so right, there are so many more options besides bisphosphonates, like the IV PTH that Lilly has, and the new monclonal rank2 inhibitors.  I was just warning Lago that so many physicians may jump to "oh, a patient with GERD, let's skip the oral route for the bisphosphonates and do the 1 year IV".    Especially since the bisphosphonates are the first line of treatment and inexpensive.

    My Mom has a good friend who had that done due to GI issues, and she had never taken an oral bisphosphonate pill before.  She was in massive bone pain for over a year and it isn't reversible.  She just had to wait for it to settle down in her bones and then started a different therapy.  I felt so bad for her because she is such a sweet and active lady.  So now I say, yeap, I'll do the IV treatments to avoid stomach upset, but not until I've had a few months on the oral bisphosphonates first to see if they make my bones hurt.

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  • Pbrain
    Pbrain Member Posts: 863
    edited March 2014

    Yay Arlene!  YAY!  We all need to keep hearing these milestones!

    Momx2, don't worry about a drop in ejection fraction of 5%.  The echo is read by a cardiologist, so there is a lot of imprecision in the interpretation (if I told you how they actually do it, you would not believe me ;-)  So keep on believing that you are doing well.  Good luck with the BMX.  I know many, many women who have had the procedure and they say it is not so painful.  The drains are annoying, but like Lago said, you'll feel better each day.  And the first thing I asked my BS at diagnosis was could I go through all of this with no pain meds.  I've only really ever had codeine once after a pretty gruesome oral surgery procedure, and I puked all over the place.  I have no desire to try any of the other meds if I don't have to.  She said most of her patients can handle their pain with tylenol or motrin, even the BMX patients.  So just wait and see if you need it.  Ask for a scopolamine patch at surgery.  I did and it really was a life saver (actually my anesthesiologist asked me if I could ride roller coasters and I said no way.  He asked why and I said I puked up my guts.  So he stuck the patch behind my ear).

    And Fluff, I did my PhD with one of the top guys in cholesterol metabolism.  He said he honestly believed we should fortify our breakfast cereals with statins ;-)

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  • lago
    lago Member Posts: 17,186
    edited March 2014

    Pbrain don't get me wrong. Nothing wrong with going to therapy if you need it. But it takes time and many women do need the support of therapy. 

    I'm so confused about what to do for my bones. I mean I know reflux is a problem. I bet bouts of it from time to time and I can't even figure out why. I already have some back pain. I really hope this other doctor can have a good discussion with me and not "read these." giving me info I already know about. That will be next months update.

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  • camillegal
    camillegal Member Posts: 16,882
    edited March 2014

    Fluff I think I understood that, thanks for filling me in--I guess I missed that on this thread. Oh is SpecialK having this done today?  I so wish her well.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2014

    Thanks fir the good wishes!

    Hi all - home but in some pain. And for the first time anesthesia has made me nauseous. He removed the implants , sewed in new mesh and did a bunch of pocket work, then put the implants back. Oy.

    Fluff - maybe try some time release Niacin and fish oil. I was on a statin for a number of years but came off last year and I'm holding steady. My good cholesterol is the only thing driving my number higher.

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  • lago
    lago Member Posts: 17,186
    edited March 2014

    Yay specialK. You sound great

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  • princessrn
    princessrn Member Posts: 370
    edited March 2014

    pbrain... Once read a book by a cardiologist. When asked what he takes. Prophylactic statin!!!

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  • camillegal
    camillegal Member Posts: 16,882
    edited March 2014

    SpecialK I'm glad u'r home--heal well and take it easy.

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  • naiviv
    naiviv Member Posts: 535
    edited March 2014

    Special K

    Glad to hear you are home, hopefully feeling much better soon.

    Vivian

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2014

    Hi all - thanks for the good wishes. Didn't get a lot of sleep but I really have nothing to do for the foreseeable future so that is not important, right? Today's agenda includes a sponge bath and a movie!

    On the statin - I wanted to come off because they are known to cause some joint and muscle pain for some - also tired of taking pills, lol! The doc who let me wean off said he wouldn't have put me on it to begin with, didn't feel my numbers were that bad. I will be curious if they have improved at all with my new eating plan.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2014

    Thanks SpecialK, I'll add in some Niacin time release. Glad to hear you are feeling well. Your reason for the not wanting to take a statin is the same as mine. Didn't want any more joint pain. And sick of pills, however those enormous fish oil pills are hard to chug down, lol. My husband takes a crestor, and he would wake up with really bad leg cramps for awhile. That seems to have settled down.

    Given all the hype on the news about starting individuals on cholesterol meds earlier, I'm sure he will want to do something. I'm going to ask for three months to see if I can get it down. With the two falls I had last July and September, and the toe surgery in january, I have been able to do very little cardio in the last 7 months. I'm gradually working back up now, and hope that with the cardio and some weights I can help bring the cholesterol down, and lose a few pounds.

    Glad to hear you are doing reasonably well SpecialK.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2014

    Princess, I had to look up Prophylactic statin. Interesting reading. There is a lot of support for anyone over 55 being prescribed automatically. 

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2014

    Thanks fluff - try upping your fiber too to reduce your number. I can't take big pills either so I take krill oil instead of fish oil - just one pill a day and its smaller.

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  • princessrn
    princessrn Member Posts: 370
    edited March 2014

    fluff queen.... Lots do have discomfort on statin meds but if you can tolerate them, excellent preventative addition to medications. Like  talking a vitamin! 

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  • lago
    lago Member Posts: 17,186
    edited March 2014

    BTW don't know if you folks saw the latest about Generic Lipitor from India: 

    India's Ranbaxy issues massive recall of generic Lipitor

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  • Pbrain
    Pbrain Member Posts: 863
    edited March 2014

    Fluff, I had a complete blood panel done by Boston Heart Labs (St. Vincent's offers it) and they did some genetic testing showing I was a poor metabolizer of simvastatin.  My doctor moved me to Crestor and my joint/muscle pain was way better (until I got put on Arimidex).  So it's not a bad idea to try another statin if one causes you pain.  Most are generic now.

    Special, glad you are feeling ok.  :-)

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2014

    pbrain - thanks! I'm hanging in!

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  • soriya123
    soriya123 Member Posts: 662
    edited March 2014

    specialk, hope you feel better soon.  :)

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2014

    soriya - thanks - better every day! My DH is taking good care of me! The PS was explicit that I remain quiet - very hard for me!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2014

    thanks all, I'll see what he says when I see him after my pet scan results are in. 

    SpecialK, did you have to have drains again? Hope not!

    Lago- they took my husband off Lipitor pretty quickly. The doc doesn't like it and believes Crestor is a better product.

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  • lago
    lago Member Posts: 17,186
    edited March 2014

    Fluff I have heard that too, that Crestor is better.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2014

    All of the issues with Lipitor is one of the reasons I wanted to go off of it.

    Fluff - the PS said before the surgery that I might need drains, depending on how "wet" things looked, but I did not wake up with any so I was happy!

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  • Bren58
    Bren58 Member Posts: 1,048
    edited March 2014

    SpecialK, glad you are recovering and so happy for no drains!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2014

    bren - I was pretty excited to wake up without them - I have had them for three other surgeries and they usually come out within a week or so, but I realize that I have been lucky on that front - others have them much longer!  I was joking with a long time friend on the phone this morning (who had them for weeks!) that it is because I am a dried up old hag, lol!

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