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  • SAB
    SAB Member Posts: 1,121
    edited May 2016

    Just a quick check-in to let you know I'm still around. Didn't read the pages, so sorry, I hope everyone is OK. Thursday is my five years from diagnosis. My MO is at a conference on newest treatment protocols and will make a decision about tamoxifen when she gets back. About to set up that five year mammo. Have been putting it off.

    Life remains busy, but I will try to go back, read, and check in more frequently.

    xoxoxo

  • gigil
    gigil Member Posts: 916
    edited May 2016

    Hi there just checking in. Joan great to hear from you. Are you feeling better? Is Memorial Day helping you to have some time off? SAB I am with you. I am 5 years out and due for a mammogram. Lately I have been having lots of body aches and pains. My back has traveling tender spots, shoulders, thumb joints. I had a bit of a cold and now this. I looked up truncal edema. Symptoms match that some. I am just generally very sore. I follow anti-inflammatory diet and I have generally felt great. So strange to be feeling so sore! Anyone have any ideas? I wonder if I need a new mattress.

  • joan811
    joan811 Member Posts: 1,980
    edited May 2016

    Hi Gigil, Congrats on the 5 years.
    Yes, I have a wonderful 3 day week end!  Today I was lounging and looking at yard work.  Just looking.  I have my 5 year mammo in July.  I have been "graduated" from seeing the BS and the MO...so I will see the NP who specializes in survivorship.  I am doing fine, and I don't really like seeing her.  She is kind of too friendly and likes to talk stand about 10" from my face.  I do not have any lifestyle questions.  But I really do appreciate her kindness! Personally, I'd rather see the docs once a year.

    Gigil, I do not have advice about your pain.    Is it both achy and tender in spots?  Some days I take Advil.  I am in PT right now for knees and now lower back and hip pain.  Some days I think it is just how it's going to be...but the PT helps.

    SAB, congrats on your 5 years.  I am sending positive thoughts for good reports.  I hope the job is being kinder to you.  Work is taking its toll on me....but I choose to work for part of the summer so no complaints.

    Sunny, how are you doing with the Femara? You have just started it, I think.  Everyone is different.  I hope it goes well for you.
     I have had side effects.  I started Arimidex but had to stop it so I resumed it when radiation was done.  So I have some months to add on.
    I have had arthritic pain in my hands and leg pain...but the worst is the cognitive impairment.  It was one of the first things I noted when I started the drug-- Forgetting words, saying the opposite of what I meant to say, and sometimes forgetting where I was while driving.   I am taking other drugs to counteract.  I am active and work full time, and in fact I do my best when I am focused on a task. I know that some MOs will advise staying on the drug.  I am 67 and I do want to stay cancer-free; but I don't want to take it if it is not going to make a difference.  It also causes premature or accelerated aging and for me, minor bone loss.

    I will do some reading on the latest statistics for the AI drugs.  If I need to continue, it would be tolerable.

    I hope everyone is enjoying some relaxing moments this week end.  Besides reflecting on the holiday, I also have two friends going through very difficult loss or illness. 
    We're getting rain tomorrow; I hope you have sunny skies.
    Joan


  • edwards750
    edwards750 Member Posts: 1,568
    edited May 2016

    Congrats to our 5 year milestone sisters! Seems like we were DX a lifetime ago. Thanks Gigil and Joan - I am relieved to be sure. My last ONC visit is in August and the end of Tamoxifen. A friend had the test to see if she would continue on Arimidex for another 5 years but I'm not sure what the test is exactly except her score was high thus another 5 years. I didn't have that test. My ONC said there was no need for me to keep taking it given my Oncotype score early on and she said it would be tempting fate with the SEs from Tamoxifen like blood clots. It will be interesting to see if my joint pain, difficulty concentrating, etc goes away after I stop taking the drug.

    So sorry about your friends Joan. My DH's brother has been DX with prostate cancer. Not sure what the treatment will be. Their father had it almost 10 years ago. He is fine and 91!

    I wish our MIA buddies would check in too so we know you guys are okay. I miss Kate too. I've lost two friends to BC and another DX with Stage IV. Neither wonder we are a bit anxious pre-mammo.

    I watched a Memorial Day special last night. I was in tears by the end of the show. What ultimate sacrifices our military has made to keep us safe. My father, brother and friend all served in the military. So proud.

    Have a great holiday everyone!

    Diane





  • rmlulu
    rmlulu Member Posts: 1,501
    edited May 2016

    Congratulations to our 5 year milestone gals! Happy Dance 🎉🎈💕😜👍

    Here's to your 5 yr mammos...interesting to see how different teams determine continued Al/Tam usage and monitoring. Pray our bodies will forever be cancer free

    Yes, I miss our sweet Kate (Joyce) too.

    In June, bone density test...hoping I have not lost more bone mass...I really do not like having Zometa infusion every 6 months...have some aches in hip and back...still dancing, walking, weight lifting...so fingers toes cross that bones are stronger. Will admit I don't take my AL every day and have given myself extended vacations due to hand pain.

    Thunder and lightening here in TX today. Had a set back on moving, but working on it. Pup turns 2 and is 85# of energy. Time to go play tug a war on back porch hopeful weather will clear up for his play date at the dog park at 4...a muddy mess but it will burn up all that puppy dog energy.

    (((Hugs)))

    Cindy


  • SAB
    SAB Member Posts: 1,121
    edited May 2016

    Yes, like Cindy I would love to hear back from the five-year crew to see what our practitioners have recommended. I am leaving for a conference tomorrow, but will make appointments when I return, and report back.

    Memorial day is quiet for us, family time, a sense of loss for our fallen and an appreciation of family who have and continue to serve. May they stay safe.

  • Sunnyone22
    Sunnyone22 Member Posts: 61
    edited May 2016

    Joan811 - thanks for asking how I'm doing on Femara. Actually doing fine after 2 months. I've had minimal SE's except for wrist and hand pain (which I already had from arthritis). Minor hot flashes have pretty much disappeared. No cognitive impairment - as a matter of fact, I feel I'm focusing even more now that most of the drama of BC surgery, rads, doc appts. are behind me.

    As we know, Femara and most AI's cause bone density loss so I had my first Zometa infusion Friday. It' really kicked my butt Saturday and I was on the couch all day with substantial flu-like aches. About 36 hours after infusion, I felt better and by today (Monday) I'm close to normal. I am told the first time is the worst so I'm anticipating that my next infusion (in November) will have less SE's.

    I know AI's are difficult for some and each of us makes our own choice. But since I didn't do chemo, I want as much systemic anti-cancer help as I can get. Studies have proven that AI's are powerful anti-recurrence drugs which is why they are so widely prescribed so I'll find a way to take one as long as it's having the deterrent effect. As for the Zometa, some studies have identified that it might be a bone mets deterrent so I'll keep taking that too, even if it means a day and a half on the couch every six months. My bone scan showed borderline osteopenia so I'll hopefully slow, stall or reverse that bone lose with the twice-yearly infusions.

    All of this is very doable in my opinion and I consider myself blessed to have such a good team of BS, MO and RO on my side.


  • MostlySew
    MostlySew Member Posts: 1,311
    edited May 2016

    Hi All,

    Happy Memprial day. Good to hear from everyone. A few thoughts ( when didn't I have them?)

    On osteoporosis.....be sure to eat prunes 5 or more a day for the magnesium. Helps absorb the calcium. I know it helped my scores which have plummeted with all the prednisone I took.

    On zometta....I get an infusion once a year, they call it reclast I believe. It seems easier just once a year.

    On the continuance of taking an AI longer than 5 years....my doc tells me there is a new Tumor marker test which has been out for a year which gives them insight about the value of you continuing the AI. they do not do this testing on everyone, I guess it depends upon your initial onco score and your tolerance for the drug. I won't know more until October when they run my test. Your tumor is kept for 10 years so apparently is still available for this testing

    On aches and pains....I never had much joint pain from my AI and did just fine until I had that 9 months of high dose prednisone. Talk about joint pain. I can barely go up stairs. If I'm in one position longer than 20 minutes or so I completely stiffen up...and then walk like an old lady. Once I get going I'm fine, but then can't unbend enough to sit. I'm hoping this is just still from coming off the prednisone and goes back to not being a problem or I will have a very tough decision about continuing taking the AI if that is what's recommended for me. The good news is I'm off the prednisone and my lung disease is apparently cured. Some lasting damage but I can live with it.

    Gigil, turn the mattress. Always helps me.

    On our missing members.....come out, come out where ever you are, Janis? Brookside? Everyone else

  • brooksidevt
    brooksidevt Member Posts: 1,432
    edited May 2016

    I'm here, Sew. Thanks for reminding me that I have not been posting. I guess I've been in a bit of a funk. I've been out on disability since sometime in November. It's "just" sleep apnea. All the people I've spoken with who've had this dx have insisted that the minute they got their sleep machine, their energy returned, the sun came out, and the fat lady sang. I, on the other hand, not so much.

    The treatment is a cpap machine, which blows air into your nasal passages, preventing your soft palate, and whatever other thingies hang around in there, from collapsing into your airway and temporarily stopping your respiration and your proper sleep pattern. The first mask I was given continually leaked, resulting in my waking multiple times during the night to resettle the blasted thing, thereby missing out on the best kinds of sleep.

    I now have a new, larger mask. Similar problem. I think in general I have more energy, but still drift off multiple times/day. A week ago, I drove into my driveway, was so sleepy, I just put the car seat back, and, instantly went to sleep. In short, it's all very frustrating, irritating, and @#$%^&.

    Diane was it that Memorial Day concert you watched? Brought me to tears too. Several times.

    I also miss Kate/Joyce, and have been thinking of her. Maybe it was the question about how far we all are from treatment? Brought me right back to the beginning. I'm three years past rads, three years into an antihormonal. I switched from arimidex to tamoxifen maybe six months ago, am taking one generic aleve and 1,000 units fish oil each morning, and find my joint pain is finally, FINALLY, under control. I've put on weight (more funk) and am just beginning to shed some of that.

    Interesting about the new test that will help determine whether we need to continue the antihormonal. This thread is the only place I've heard of it and I'm hoping that when my five years is up, it will eject me from the Rx department! I'm also hoping my onc and surgeon won't dump me when I've reached that point. Isn't five years about the time most of us should be particularly on the lookout for recurrence? I'd hate to lose the particular expertise of the docs just because of a calendar issue.

  • chisandy
    chisandy Member Posts: 11,408
    edited May 2016

    I'm nearly 10 months out from dx, a bit more than 9 months post-op, and 7 months post-rads. Finishing my 5th month on letrozole. Side effects haven't been that bad, except for the weight gain caused by slowed metabolism and fatigue. Joint pain is pretty much ameliorated by my daily Celebrex in the morning and Tylenol at bedtime--I have artificial knees, so there's no cartilage there to be inflamed--but I do have some “startup" stiffness in my right hip (the one I injured last year shoveling snow and walking through deep drifts during a blizzard) and hobble like a little old lady for the first 20 paces or so.

    And my R thumb (on my “picking" hand) has begun triggering on arising; it reverts to just a little stiffness after the Celebrex kicks in. I'm putting off getting the cortisone shot until I can no longer get some relief, because it's on my lymphedema arm. My hand surgeon, who did the left one--“fretting" hand--6 yrs. ago--probably has no LE-savvy nurse in his freestanding surgi-center, so I will probably have to find a surgeon affiliated with the NorthShore Health system, which administers my bc and LE care and can have an LE therapist in the OR to do immediate wrapping even before I come to, should I need tendon-release surgery; or in the surgeon's office to monitor my hand & arm for swelling, and help me don compression right after the shot. A couple of women in my support group had the shot in their LE-arm hands and said they had no flares or infections.

    Running the AC at night prevents the night sweats, and my hair seems to be holding up OK on biotin. A quarter-mg. of Xanax helps me get to sleep just fine--but I do need to sleep 8-10 hrs with it or I feel hung over on arising. (I understand Ativan has less interaction with letrozole, so I might switch to that when I run out. Afraid of sleeping pills like Ambien, Lunesta, Rozerem, etc. because of sleepwalking/eating; Unisom does nothing; Benadryl is contraindicated when on letrozole; and Norco, even half the smallest dose, plugs me up and requires a paper scrip and a visit to the doc for every 30 pills).

    As to rads fx, for a couple of months I had a sizable increase in my tumor-cavity seroma, which was fibrosed and encapsulated, and some pinkness over the radiated area. It looked like a significant bulge on the side of my breast, requiring I go up a band and cup size. But at an unrelated visit to my derm, she prescribed a steroid ointment--that, plus tucking a Solaris Swell Spot pad into my sleep bra, made the pinkness disappear, softened the fibrosis, and has begun shrinking the seroma. The flip side is that I am getting point-tenderness over the lateral side of my rib that I don't have on my non-cancer side; and more and more nerves seem to be reconnecting and reawakening, with the occasional zapping pains my BS' NP warned me I might get for up to a year. More ominously, at my derm followup, she noticed a back mole that looked highly suspicious for melanoma, so she excised it and a sizable margin & divot. I think it may have been in the direct path of one of the rads beams. Back in Dec., I consulted my PCP for a large sebaceous cyst on my back, and he said nothing about any moles. (And he is a master diagnostician--found intermittent mitral valve prolapse with just his stethoscope when an EKG, echo, treadmill, and nuclear heart scan at a major teaching hospital turned out normal; and he successfully diagnosed NPH--normal pressure hydrocephalus--in a patient whose family thought he had Parkinson's and dementia and were about to put him in a nursing home). I'm on pins & needles awaiting my biopsy results--which won't be in till at least Thursday.

  • MostlySew
    MostlySew Member Posts: 1,311
    edited May 2016

    ChiSandy, good to hear from you. Fingers crossed for B9 results Thursday.

  • brooksidevt
    brooksidevt Member Posts: 1,432
    edited May 2016

    Sandy, it just seems you're dealing with one unanticipated thing after another. Have you tried OT for the thumb? It helped me a lot. Shortly afterwards, a switch from arimidex to tamoxifen brought that thumb right back to normal. Any chance there's such a thing as an easy-grab pick to protect your tendons?

    Lymphedema sure does complicate things. I had no idea release surgery would (or at least should) require immediate compression. Hopefully, you will not need to go that route, but what a bummer that having the correct staff member available would require a change of surgeons!

    Good luck with the biopsy. It just seems so unfair that you need to deal with that on top of everything else. I surely hope it turns out to be completely benign.


  • MostlySew
    MostlySew Member Posts: 1,311
    edited May 2016

    hi Brookside,

    Glad you're here. I'm so sorry the cpap machine hasn't solved the fatigue issues. I love my machine although I do wake up to reset the the mask for leaks. But I wake up so much anyway it doesn't make any difference. Have you thought about having a full physical? It sounds like something more to me. And I'm no doctor but what is your oxygen level at? Does it plummet with activity? I ask only because when we were diagnosing my rare lung disease that's what would happen. I was constantly tired, occasionally felt I'd have to take a nap to walk across the room, had a non-productive cough and my O2 levels would go down if I tried to climb stairs or exercise. It was getting progressively worse. I thought the fatigue was from the AI. Anyway, good luck to you as you've been fighting this a longtime. I hope you find an answer soon.

  • joan811
    joan811 Member Posts: 1,980
    edited May 2016

    Sunny, I think your post shows a very positive outlook on post-surgical BC prevention. Your Onco score isn't bad, it just isn't super low.  I am not familiar with the recurrence rate for ILC.  But your stats are very good.  Hope for the best, and take it one day at a time.  That is how we do this...
    Interesting that you are feeling an increase in energy since initial rads recovery.  That makes sense.  I believe that after I took my post-rads two weeks of rest, I felt much better about things in general.

    Chi Sandy, I wish you the best with this latest testing.  It is so stressful to wait and worry.  Please check back in!  I have not heard that Benadryl is incompatible with AIs.  I use it very sparingly.  I am curious as to why.

     Brookside, you have not been feeling up to par in a long time.  Sorry that you are not yet comfortable with the cpap.  I hope you can find someone who is interested in finding out why you are so exhausted. 

    Sew, that is such great news that your lung has healed and you are clear of disease.  It was a very long road for you, and you had us worried.  It sounds like most of us are experiencing some aches and pains...and we will probably not know how much of it is related to AI / Tam or just progressing arthritis etc.

    I have watched the Memorial Day concert for a few years, and it has changed my perspective on this holiday.  It is a special event especially for those who served or lost loved ones.  My DH was in the military for almost 30 years including active reserve status.  He is retired from the Air Force Reserves, and our flag is one of only a few I've seen this week end. 

    Time to think about going back to work tomorrow.   I could use another week off.  It was foggy and drizzly today so DH and I went out to our favorite restaurant on the water because most of the NY folks had already headed back.  I never got to the beach.  I spent a lot of time organizing pics from our trip to Ecuador and putting some online.  It now seems like a distant memory, and it's only been a week! 

    SAB, how was your hike? 
    Happy end of May!

  • MostlySew
    MostlySew Member Posts: 1,311
    edited May 2016

    thanks Joan. Heart

  • chisandy
    chisandy Member Posts: 11,408
    edited May 2016

    MostlySew, so glad to hear your lungs are clearing up!

    Brookside, OT doesn’t help with trigger thumb (stenosing tenosynovitis) because the triggering occurs when a nodule that’s developed on the tendon catches on the sheath during flexion and extension. Among the (as yet unexplained) risk factors of developing the nodule (obesity, diabetes, being female) is age...specifically, estrogen withdrawal. My first L thumb episode occurred a couple of years after menopause. The first episode was successfully treated with a cortisone shot (mixed with lidocaine and the most painful 20 seconds of my life--next to the shots into my nipple for the pre-SNB tracer isotope). Three years later, it recurred--surgery was suggested, but since I was about to go on tour, I got another shot and had the tendon-release surgery (with the cortisone flushed out to prevent dissolving the tendon over time) the day after I came home. OT was useful in regaining my ROM while I still had my sutures. Actually, my distal thumb joint isn’t the one I need to move in order to either fingerpick (the joint at the base where thumb meets palm is the one, and it’s fine) or hold a flatpick. It’s just sore and disconcerting. The triggering in my L (fretting) hand affected my playing more--I had to consciously practice centering my thumb at the back of the neck rather than wrapping it.

    I was doing some research this afternoon as to which herbs are a no-no with ER+ tumors and/or letrozole. (Was considering switching my probiotic to one with garcinia and green tea extract, or just adding garcinia back to my regimen to combat the letrozole-caused metabolic slowdown). I stumbled across a page from the site evidencewatch.com regarding drug, food and herb interactions for bc patients on either chemo or anti-hormonals or both. I discovered to my dismay that the following substances might inhibit the effectiveness of letrozole by interfering with the pathway for inactivating aromatase: St. John’s wort, evening primrose, black cohosh, genistein (in unfermented soy), garlic (alliums, but not onions), cloves, thyme, chamomile, cruciferous veggies (any with brassica, all the cabbage & broccoli family--including even kale and bok choy), grapefruit (fruit and juice), bitter orange (fruit and extract), PPIs (all of them), caffeine, resveratrol (supplements and red wine in quantity), Benadryl, some benzodiazepines (but not Ativan), As to tamoxifen, all SSRIs, and bupropion inhibit the pathway by which it inactivates estrogen receptors--but some SNRIs (Effexor and Pristiq) seem OK. Root vegetables actually seem to inhibit the effects of and reduce production of estrogen--whether the process of conversion by aromatase or the sensitivity of tumor receptors.

    The garlic, cloves & thyme interactions are for the whole fresh form in significant quantities in a dish, but the use of the powdered or crushed dried versions in small seasoning quantities are okay. As to alcohol, there are some studies that in moderate (<1 drink/day) quantities it might function as a mild AI itself. And cooking cruciferous veggies by boiling inactivated much of their anti-AI effect.....but steaming or nuking didn’t.

  • phoebe58
    phoebe58 Member Posts: 96
    edited May 2016

    yipes Chisandy -- I am gobsmacked by that list -- so many items that are supposed to be uber healthy.... as a regular imbiber of garlic, numerous curciferous veggies [unboiled], one strong coffee daily, occasional chamomile tea and of course red wine, I am dismayed right along with you. Thanks for sharing. Why is this not more common knowledge [rhetorical Q]???? I had only heard about avoiding grapefruit, a former love, and now that you mention it I vaguely recall hearing something about St John's Wort. primrose, cohash and genistein..... but promptly forgot as I don't use those. May need to develop a carrot wine though.... I wonder, is there a safe-ish minimal level of these veg? considering all their other benefits, it may be worth it.

  • chisandy
    chisandy Member Posts: 11,408
    edited May 2016

    Bear in mind that this was an arcane bunch of (conflicting) studies, with a lot of eyes-glazing-over small-font biochemistry (alphabet soup of enzymatic pathways) on one site. But I find the site more trustworthy because it is run by actual allopathic medical scientists--not “alternative” practitioners or questionable mavericks like Mercola.

    I have come to the same conclusion as did singer-songwriter Joe Jackson back in 1982--“Everything Gives You Cancer.” So I am taking the advice of my BS’ NP and my PCP: moderation in all things. (Except, of course, the obvious interaction warnings in each drug’s prescribing info and its own mfr’s website).

    BTW, the timing of onset of my lymphedema coincided with the beginning of my taking letrozole. (The cording occurred six weeks earlier, a week or so after finishing rads).

  • brooksidevt
    brooksidevt Member Posts: 1,432
    edited May 2016

    Thanks for the thought, Sew, but my oxygen level is fine. Exercise is not a problem, but whatever activity I engage in while I'm feeling alert is pretty much followed by a nap. Getting really annoying. Back to see the pulmonologist next week.

    Sandy, the way they explained the trigger thumb thing to me is that this begins with inflammation, and OT can help with that, both with exercise (mostly stretching), massage, and ultrasound. If that fails, then comes the injection, and, if needed, surgery. I was very glad the OT got rid of almost all my symptoms.

    I'm surprised that cruciferous veggies can interfere with antihormonal drugs. I think those are the main components (or not?) of DIM, which some take to balance estrogen. Uh oh. Does that mean that these things are loaded with estrogen? Black cohash is what I took for hot flashes (didn't help!), so I assume that has estrogen.

    I'm in agreement with the everything-in-moderation philosophy. Don't necessarily follow it, but I'm a believer.

  • brooksidevt
    brooksidevt Member Posts: 1,432
    edited May 2016

    Oh, and the OT made me a wonderful splint. It's just an oval, about 1/4 inch wide that goes over (or under--forget now) my thumb, with a piece that wraps around the other side. She also made one that's a 1/4 inch spiral. The fabric she used is soft, can be squished into place, then hardens in water or heat or something (again, I forget). Both are tiny, lightweight, flesh-colored, extremely comfortable, and work better than the traditional splint things you can pick up at the drugstore.

    For the splint alone, I'd recommend OT for anyone developing trigger fingers.

  • edwards750
    edwards750 Member Posts: 1,568
    edited June 2016

    Yes it was Brookside. It was such a wonderful tribute to our military past and present.

    Several ladies in my group at church are having that test. I won't be seeing my Oncologist after August but my BS will continue doing my mammos. Actually all my ONC did was monitor the effects of Tamoxifen. She said I could continue to see her once a year but for me it would be rather pointless.

    Phoebe - gobsmacked? Too funny. I'm reading books by an English author named MC Beaton. The characters in the book use that word a lot and when the heroine is surprised it's "snakes and bastards". The heroine is a private investigator named Agatha Raisin. I love her books. They are so entertaining.

    Joan - that is shameful more people don't honor our military. Seriously can't display flags? I lost an elderly friend a few years ago who flew with Dwight Eisenhower in WWII. He received several medals of honor and the Purple Heart. He was quite the storyteller. Amazing rescues and emotional stories about losing his friends in combat. Makes me so proud and so grateful.

    Brookside - everything in moderation is the way I do live...

    Diane

  • brooksidevt
    brooksidevt Member Posts: 1,432
    edited June 2016

    Diane, the armed services guy I always think of is one of my clients, a WWII bomber pilot. Age 22, responsible for a crew of six or eight (I forget), all about the same age. What he always talked about was the discipline necessary to stay in formation when the planes all around were being shot down. I can't imagine how you'd do that. Throw a ball at me and I don't catch it; I duck. Just reread that sentence. I suppose most people would say, "throw a ball to me." I always feel like a target.

  • edwards750
    edwards750 Member Posts: 1,568
    edited June 2016

    Their courage at such young ages is just amazing Brookside. My older friend who died used to call me his GFF. Haha. He was a Notre Dame grad, read to the blind for 20 years and played handball until he was 80 beating guys half his age. His mind was so sharp until the end. He had WWII memorabilia all over his apartment. He was a tail gunner and the lone survivor of his original crew. I took my son to see him the week before he died. He always wanted to meet him. I regret not taking him sooner. When he died my son was in college but made the trip to his funeral to be with me. I was so emotional and so grateful and impressed my son came. I'll never forget that.

    Diane


  • ohiofan
    ohiofan Member Posts: 152
    edited June 2016

    Sandy, thanks for the list. After 2 years I had forgotten about the no-no list.  whew.....Hope you feel better soon.

    Congrats to all of you 5 year survivors!!!!  I was wondering if the docs forget about you after that milestone.  Sounds like some do and others don't.   My RO and BS gave me 1 year appointments today, and that is after 2 years.

    Take care!

    Ohio


  • joan811
    joan811 Member Posts: 1,980
    edited June 2016

    Hi Ohiofan and Phoebe.

    I had my appointment with the NP. I asked her specific questions about continuing the AI when my 5 years on the drug is up. She said there is research that shows advantage of continuing. She said she would contact my MO and ask what she thinks may be done in my case. Plenty of time....I have at least 8 months to go.

    I have a mammo in August, bone density any time this summer, and then I do not see anyone for a year. No blood work was drawn as I saw the MO this year already. I just don't know how I feel about no testing or regular appointments for a year.

    Time for sleep. Long days right now, and 3 weeks to go of summer semester.

    nite all...

  • chisandy
    chisandy Member Posts: 11,408
    edited June 2016

    Just got back from “An Evening of Survivorship” at the Cancer Wellness Center up in Northbrook. The doctor who heads the program (“Living in the Future”) just got back from the ASCO conference--and in her “Food Myths & Facts” presentation doubled down on cruciferous veggies as cancer-fighters. So I guess that settles it. Pass me some more sauteed broccolini, please.

  • phoebe58
    phoebe58 Member Posts: 96
    edited June 2016

    i'll chew to that chisandy -- love brocollini! Great news.

    Joan My MO had initially said 5 years 'at least and 10 if you can do it'. I am just over a year in, so plenty of time for research to update, but think I will err on the side of caution anyways, unless experiencing huge symptoms... then the QOL balance beam dance begins. I am heading down to Victoria next week so may try and pop in to my NP for follow up suggestions, whom I had seen at the beginning of this journey.... thx for reminder!

  • countryfrenchrose
    countryfrenchrose Member Posts: 37
    edited June 2016

    hi just saw your post re aches and pains. I finished radiation April 25, 2016. I live on Tylenol probably too much I take it everyday. Just saw a neurological oncologist yesterday she is recommending I take tramadol and maybe nortryptyline for all my aches and pains . Not sure if I will take the nortryptyline. But I got a terrible cough. Wound up in ER 102 fever so they checked my blood work and my WBC count is low.

    Every time I find out about low WBCs I have aches and pains. For me lowere back ache where maybe my back could hurt if I move too fast seems to be when my WBCs are low.

    The oncologist said not likely but last time my WBCs were in the 3 range I had aches and pains that were slightly unusual

    The oncologist said that the blood work looked like someone post chemo and radiation too.

  • gigil
    gigil Member Posts: 916
    edited June 2016

    When I finished radiation, my WBC was low for about six months. Also, my thyroid function was very low and vitamin D was almost non-existent. I have worked hard to return things to normal the past five years. Vitamin D still runs low, but much better. I take supplements and spend as much time as I can in the sunshine. I still get small amounts of fluid in my rib area on the side where I had radiation therapy. When it is there, the pain occurs in both the ribs and the back. I find qigong to be helpful and self massage (where I can reach). I have all but given up sugar, and I do a long fast between my last meal of the day and my first meal of the next day, studies have shown that can starve any bad cells, so I am all about that. You would think I would be a tiny little thing, wouldn't you? I am short, but still about 35 lb. overweight, despite good eating habits. Last but not least, I use turmeric and black pepper every day in my late morning smoothie. I also try to get a 30 minute walk daily and my husband nags me to drink lots of water. (He is a physician and he says most of the problems we see with digestion can be cured by drinking enough water.). Still working on things 5 years down the road. Hi to everyone. ❤️ Love, GiGi

  • april485
    april485 Member Posts: 1,983
    edited June 2016

    overweight, shmoverweight Gigil! You are still a cutie patootie

    Winking