Stage IV and now worried!

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  • Moderators
    Moderators Member Posts: 25,912
    edited April 2013

    Bryan, it has been some time since we have heard from you.... How are you doing???
    We are all thinking of you!!
    The Mods

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  • bigredbear
    bigredbear Member Posts: 16
    edited April 2013

    Well the spine biospy went good got a great sample and the test say its my stage iv cancer returning for a peep. Now  the cancer is starting to  cause me back pain and its made cancer real this time around. My first go was pain free except for my operations. It is stopping me from doing the one thing that I so love to do PLAY GOLF.... Its been my life for 25 years and I have played golf all my life since I was 6 years old... My heart is broken and I and so mad, There has only been 1 other guy with breast cancer in my area. He was stage 2. My doctor told me they just do not know enough about male breast cancer yet. I am seeing my other doctors on monday I have started new drugs on friday and now need radaition to my spine to try and stop it and ease my pain. stage iv her2- PR+/ER+. Wish there was some one who knows about male breast cancer around here.all about it anyways.. Will report back when I learn more. Thanks for the support !

    Bryan Jackson

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  • Padiddle
    Padiddle Member Posts: 853
    edited April 2013

    Bryan:  Just read this thread and your latest post.  Sorry you have to go through this.  I can tell you that radiation treatment to my sternum helped the pain, so you should get some relief to your back.  As far as I know, you should be able to get all the treatment you need whether you have insurance or not as long as you make a monthly payment towards your health care.  I was uninsured when I was first diagnosed in 2000.  I made monthly payments that were affordable for me for years.  Also, have you ever asked about clinical trials where there is less cost to you?  I hope things work out for you.  Your in my thoughts.  Jean

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited April 2013

    Bryan,

    We have one guy in our area who had male breast cancer, Bob Riter. He runs our local cancer resource center. He's not stage 4, but he is very helpful and knows a lot.

    http://www.crcfl.net/content/category/bob-riter-s-cancer-columns.html

    If you've got a good phone plan. give him a call at the Center. I have bone mets too, and they were painful. Treatment should make the pain lessen. Can they give you Zometa for bone strengthening?

    Jennifer

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  • steelrose
    steelrose Member Posts: 3,798
    edited April 2013

    Bryan,



    Ask your oncologist about Zometa or Xgeva for bone strengthening/protection, as Jennifer suggested. I have monthly Xgeva shots, and I do believe they help me. Also, don't give up on golf just yet! I couldn't even walk when diagnosed with spinal mets, but after treatment I got back to near normal. I know how frustrating it is... hang in there. I wish another Stage IV guy would post, or that you could find someone with first hand experience. The medical people saying they don't know enough about male breast cancer at this point sounds like a cop out. My Dad had it 15 years ago, and I know things have come a long way. Seek out as much info. as you can!



    All the best,



    Rose.

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  • Winnymac
    Winnymac Member Posts: 40
    edited May 2013

    Bryan,



    My husband is stage IV with bone mets, diagnosed last summer. The doctors have been great but we get the same thing about male breast cancer being rare and so there is no real protocol. He just finished 6 rounds of cytoxan and taxotere and we are so glad to be done. It was so much harder on him than either of us expected. There is no "powering through" something like that, you just work at it each day. He had a masectomy in November and still has a small open wound, hopefully that can heal now. Chuck did have a large mets in his sacrum that was treated with radiation and that really helped, he could barely walk due to the pain but the rads really helped. He is on xgeva for bone repair also. You sound like a fighter, hang in there, you are not alone.

    Linda

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  • bigredbear
    bigredbear Member Posts: 16
    edited May 2013

    Hello All and thanks for all the support. I just finished 20 rounds of radiation. and started on my other treatments of arimidex every day, and zometa and lupron these are every 28 days and the other is 21 days. I am feeling really tired and the radiation got to my esophagus and having a hard time swallowing and eating food. lots of pain at times. Also I have NO enegry at all bones ache headaches and a feeling of light headed at times. I would reather chemo then this hormonal crap....muscules are very sore also... CANCER SUCKS!!!!!!!!!!!!!!!!!!!!!! Bryan

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  • steelrose
    steelrose Member Posts: 3,798
    edited May 2013

    Bryan,

    The radiation after effects should go away with time. I only had ten rounds, to spine/sternum, but swallowing was difficult for a few weeks after. You will enjoy food again! I've also been on Arimidex for two and a half years now, and my body has adjusted to it. I am still achy, but again, it does get better. The fatigue is the worst part for me. Maybe ask the doctor for B12 shots? It may give you an energy boost. Was also on Zometa and Lupron! This is all new for you, so be patient. Hopefully you will be able to enjoy the activities you love again very soon!



    Rose.

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  • Fiercer
    Fiercer Member Posts: 45
    edited May 2013

    I was really fatigued too. Turned out my blood counts were way down. The onc ordered a blood transfusion. I felt great afterward!!!

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  • bigredbear
    bigredbear Member Posts: 16
    edited September 2013

    little update my cancer on my diaphram is gone t 8 vert. clear 5th rib clear now 2 more spots have shown their stinky lil heads on my sacrum and my si joint on my right side. dang cancer wont leave me alone . first breast then breast bone then diaphram, t8 vert, 5th rib, sacrum and si joint. Looks like I will be adding to my 60 rounds of rads. Where will it end. lol I will win again thanks for the support it has helped.. Bryan

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  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited September 2013

    Hi Bryan,

    I wish I could help with some info on male breast cancer, I just don't know too much about it.  It's rare, so not a lot of studies have been done.

    I am sorry to hear about your golfing.  My dad golfed every day of his life and then their group "The Bandits" would play gin rummy at the 19th hole!  He had esophageal cancer and couldn't swallow very well either.

    I sure hope your new round of treatments kicks some cancer ass.

    Will be keeping you in my thoughts.

    hugs,

    Bren

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  • steelrose
    steelrose Member Posts: 3,798
    edited September 2013

    Bryan,

    The good news is that your body is responding to treatment! We know that there's no "cure" at stage iv, but it certainly can be managed, and often for many years. Think of it as little fires popping up here and there, but they're being extinguished before they get out of control. I wish you great success with your next treatments, and I hope that remission is in the near future! Hang in there!



    All the best,

    Rose.

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  • bigredbear
    bigredbear Member Posts: 16
    edited February 2014

    Good Evening All, Its been a while since I have been here ... Sorry for being gone so long been a rough time here . I had a Great fight this time it was harder then ever before but my latest pet shows all hot spots at a low level of activity 3 or below. My hormonal treatment is Brutal I mean Brutal!! But they are killing the cancer off shortly after it fires up. I think having a pet every 6 months or less is also helping . We are catching it early and attacking it the best way they know. Dr. Robert Birdwell at Texas Oncology in Beaumont Texas  is the Man . Dr. Kong at the Cancer Center of Southeast Texas Is the other Great doctor I see. I know the facts and they are not pretty but I have you great people here and I am surrounded by great people here in southeast Texas. My Attitude is key and my mental strong. My body on the other hand well lets just say its the 4th quarter and I just got my second wind...Look out cancer its Butt kicking time!!! Thanks to everyone here

    Bigredbear

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  • steelrose
    steelrose Member Posts: 3,798
    edited February 2014

    Hey Bryan!

    Good to hear your report. It sounds like you have an excellent team of doctors, and that you're responding well to treatment. Yay! I agree with you about the anti-hormonal drugs... it ain't easy... but we do what we have to do. Stay strong, and keep that great attitude.

    Rose.

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  • pajim
    pajim Member Posts: 2,785
    edited February 2014

    Bryan, I think those anti-hormonals are much harder on men than women.  I knew a gentleman who took them for Stage iv prostate cancer and he had a really hard time.

    If you need more specific male-type input on the hormonals (Lupron, etc.) try one of the prostate cancer sites.  I don't know whether men have different side-effects than women, but they might have some tips.

    Hang in there!  Glad to read the cancer is responding.

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  • wyo
    wyo Member Posts: 541
    edited February 2014

    Bryan- I have been following your story and its good to see you here again with all indicators pointing in the right direction.  If its 4th quarter you are a Seahawk for sure today LOL.

    Your doctors do sound fantastic and I am so happy they are providing so much of your treatment and visits regardless of your ability to pay.  Now that we have the wonderful new ACA (sarcasm here)- has anything improved as far as coverage that you can actually afford without a deductible that could buy you  a used car? 

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  • EnglishMajor
    EnglishMajor Member Posts: 2,495
    edited February 2014

    Hi just wanted to share that we had three men with MBC (Stage IV) at our conference last fall. 

    Scott is in Houston:

    http://www.lbbc.org/Learning-From-Others/First-Per...

    Peter is in Boston

    http://semperfialwaysfaithful.com/blog/32-peter-de...

    Bob is not online

    Bill Becker wasn't at the conference but has a FB page for men with BC. (Bill is Stage IV, the page is open to all)

    https://www.facebook.com/BreastCancerBrothers

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  • Winnymac
    Winnymac Member Posts: 40
    edited March 2014

    Bryan, Glad to hear the update - the first year for us was so hard - felt like each appointment we got more bad news. Finally got through some rough patches and treatments and at least came to a place where we are dealing with it all much better. Love our doctors too, still praying for some breakthroughs in stage iv treatment. My husbands cancer seems to be rather stubborn and hasn't responded as well or long to treatments as we had hoped. He is on his 4th chemo after just a little over a year. He gets frustrated at the fatigue, He takes Ritalin but it doesn't seem to help all that much. The doctor did suggest ginseng that had been in a study and he is taking that now too. He didn't respond at all to hormone treatments. I guess not only is male breast cancer rare but even each man has a different result so I can see why it is so hard for them to come up with a treatment plan. Take care and make sure you do get the rest you need, your body needs the repair time with all the battles it is fighting.

    Linda

    Husband dx stage iv with bone mets 05/2012

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  • bigredbear
    bigredbear Member Posts: 16
    edited October 2014

    Hello all , hope everyone is kicking cancers butt.. I am doing well beaten cancer again 4 times in 4.5 years. I have been clean for 3 months and lost 150 lbs in the last 4.5 months. Gastric sleeve surgery is awesome.. My father is not so lucky I must report. He has been told he has Multiple Myeloma stage 3 and no cure or treatment  he is in a bad way and just does not seem right after he has watched me almost die 3 times fighting this crap!!!! I wish it was me as I already have cancer and dad does not deserve it to end like this. My heart hurts sooooo much.. I am at a loss for words or anything else.. Thanks for the support friends.. Bryan Jackson

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  • steelrose
    steelrose Member Posts: 3,798
    edited October 2014

    Bryan,

    I'm so sorry about your Dad. I sometimes think it's harder to watch a loved one go through this, than to actually go through it ourselves.  You are undoubtedly a great inspiration for him. Such happy news to hear that you're doing well... the weight loss, and clean scans... Beautiful! Stay strong, and I wish both you and your Dad the best.

    Rose.

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  • blondiex46
    blondiex46 Member Posts: 5,712
    edited October 2014


    sorry about your dad but great news about you, keep up the good work....thoughts and prayers.

    sandy

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  • bigredbear
    bigredbear Member Posts: 16
    edited November 2014

    Well I have not so good news to report I had some blood on my shirt about where my right nipple is  saw a little on my nipple on last friday then it became really painful and could not touch it so I put a bandaid on it to keep anything from touching it went to my oncologist on monday morning and he could not touch it and wanted to order test I said no test I want it removed and now He call a surgeon and on tuesday I saw him and told him I wanted it gone so wednesday next week kiss it good by I will have the right side removed also. I aint playing around this time and wasting time just remove it and then test your heart out I do not care then.  Bryan

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited November 2014

    Bryan - I just saw this thread and read through it - you have been through it, haven't you?  I'm with you - after everything you've been through, why not have it off at this point?  Please check back in and let us know how it goes. 

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  • steelrose
    steelrose Member Posts: 3,798
    edited November 2014

    Bryan,

    Thinking of you, and wishing you the best. I agree with the aggressive treatment... often the doctors aren't willing to cooperate at stage iv. Stay strong! And keep us updated.

    Rose.


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  • pearlady
    pearlady Member Posts: 882
    edited November 2014

    Bryan just saw this thread and read through everything. Sending many prayers your way. You have certainly been through a lot and I admire your attitude. Totally agree that your insistence to have it removed. I really agree with the others that since male breast cancer hasn't been studied nearly as much as with women, the medical community isn't sure what to do. Please let us hear how it turns out.

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  • bigredbear
    bigredbear Member Posts: 16
    edited November 2014

    I am back from surgery and seeing the blue sky again. Everything went well and I have no more nipples left to donate. Everything was negative on the path report is what my surgeon told me friday will see the oncologist in am but all looks great.. I am due a PET in feb.2015 so I will not worry till then ,but I know its all good. God put me here for a reason and its to show the MBC world that with the Lords hand and the right frame of mind, great doctors and the power of prayer then all can be achieved !! I am so proud of the road I have been down, And on that road I was down many times but kept fighting and have beat back this monster again and again. Male breast cancer that is Metastatic is not something anyone would want but i take it head on and am proud to stand with all who battle everyday. I know the odds but I just passed a very big one, I am here with you all 5 years after discovering I was Stage 4 metastatic. I know its"incurable" as they say but the 5 year mark is like a 24% chance. And I am there and moving forward. And will never ever GIVE UP !! Thanks for all the support !!! Bryan Jackson I will post more soon :-)

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  • steelrose
    steelrose Member Posts: 3,798
    edited November 2014

    Bryan,

    I am so happy to read your news! You're an inspiration for many here, and especially for other men who are battling this disease. Yay for the five year mark!!!! I will celebrate mine in January. A rocky road for sure, but we're here!!! Heal quickly, my friend, so you can enjoy the holidays... and keep moving forward...

    All the best...

    Rose.

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