Need advice

judyv3
judyv3 Member Posts: 143 Member
in Anal Cancer #1

I was diagnosed in October 2013 with anal cancer (they never staged it, but said it was very early).  I have been anemic for several years and my numbers got so low that my doctor decided that since I was pre-menopausal I should have a hysterectomy.  I was resistent.  He scheduled a colonoscopy/endoscopy first to rule out other bleeding issues.  The cancer was discovered then.  I have not had a hysterectomy and have not had my period since just before treatment started (November 2013).  So....

I am still anemic and my white blood cell count has not come back to a normal level.  It is steady at 2.6.  My oncologist is not happy about either of these things.  Next week I will begin IV iron (once a week for three weeks).  She said sometimes bringing up one level helps to regulate the others.  If this does not work, I will need to have a bone marrow biopsy.

I am not sure how worried I should be, lol.  I've had a clear PET scan.  I feel good.  I'm working, living and loving life.  Yes, I'm tired, but not too much more so than before I was diagnosed.

Just wondering if anyone has dealt with any of these issues.  By the way, I do not have any bleeding with BMs.  I am seeing my colorectal doc the second week of June.  I've already had an anoscopy that was fine.

Comments

  • chaybay56
    chaybay56 Member Posts: 9
    #2
    See your OB-GYN

    I too had to have blood and iron before, during and after treatment. They had to stop the radiation due to my blood work and I thought I was going to die. Did your OB-GYN say you had to have the hysterectomy? Get a 2nd opinion, especially if you are not completely confident with your current one. The radiation will damage your vagina but if yours is early then the damage might not be as bad. I hope that this cancer does not rob you of your ability to have your own children. I know everyone will say you can always adopt but they fail to realize that costs over $20,000 dollars. I am praying for a you to not have to have a hysterectomy.

  • mp327
    mp327 Member Posts: 4,440 Member
    #3
    judyv3

    My blood counts remained low quite awhile after my treatment ended.  My oncologist did not seemed overly concerned, but my internist was ready to send me to a hematologist and also have me give myself Neupogen injections, both of which I refused.  It has taken a LONG time for my blood counts, particularly my white count, to get back in the normal range.  I am now approaching 6 years since diagnosis and the last time I had bloodwork, all was within normal limits.  I'm sure this issue is a concern for you, but I hope the iron infusions will help and you won't need that biopsy.  Have you asked about getting B12 injections for your fatigue?  Lots of people get them and they seem to be very effective.  I hope everything turns out to be okay.  Please let us know. 

  • judyv3
    judyv3 Member Posts: 143 Member
    #4
    chaybay56 said:

    See your OB-GYN

    I too had to have blood and iron before, during and after treatment. They had to stop the radiation due to my blood work and I thought I was going to die. Did your OB-GYN say you had to have the hysterectomy? Get a 2nd opinion, especially if you are not completely confident with your current one. The radiation will damage your vagina but if yours is early then the damage might not be as bad. I hope that this cancer does not rob you of your ability to have your own children. I know everyone will say you can always adopt but they fail to realize that costs over $20,000 dollars. I am praying for a you to not have to have a hysterectomy.

    chaybay56

    Thank you so much for your reply.  My OB-GYN agreed that a hysterectomy was necessary to relieve the anemia.  Thankfully, I am 53 years old and have 3 grown children and a beautiful grandson.  At this point I don't know if a hysterectomy is necessary since I no longer have my period.  

  • judyv3
    judyv3 Member Posts: 143 Member
    #5
    mp327 said:

    judyv3

    My blood counts remained low quite awhile after my treatment ended.  My oncologist did not seemed overly concerned, but my internist was ready to send me to a hematologist and also have me give myself Neupogen injections, both of which I refused.  It has taken a LONG time for my blood counts, particularly my white count, to get back in the normal range.  I am now approaching 6 years since diagnosis and the last time I had bloodwork, all was within normal limits.  I'm sure this issue is a concern for you, but I hope the iron infusions will help and you won't need that biopsy.  Have you asked about getting B12 injections for your fatigue?  Lots of people get them and they seem to be very effective.  I hope everything turns out to be okay.  Please let us know. 

    mp327

    My oncologist is a hemotologist, so that probably explains the concern.  I had many Neupogen shots during treatment, don't want to do it again.  I am taking B12 and my levels in that area have doubled since.  I've been taken iron since long before the cancer diagnosis - I think I'm one of those people who does not absorb it.  I don't feel like my fatigue is abnormal.  I have nothing to compare it to, haha!  

    I'm just going to keep positive about the IV iron straightening things out!  I will keep you posted.  Thanks for your thoughts.

  • Lifeiwumoi
    Lifeiwumoi Member Posts: 4
    #6
    B-injections and Bifera helped my counts

    Hi Judy - I think you and I went through treatment around the same time. I started my treatment on November 18th and finished on New Year's Eve December 31, 2013. My blood counts took a while to go back up after treatment but they eventually did. I started getting B12 injections in February (once a month for three months and will now receive every three months) and started taking a special iron pill called  Bifera. It's over-the-counter but not all drugstores carry it. I found it at Walgreens but I had a hard time finding it on the shelf so ask the pharmacist if you decide to try it.  It's a little pricey $24 for 30 tablets but my doctor highly recommended it. I'm not exactly sure if it was the the B-injections or the iron or a combination of both that helped the counts go up but they eventually did. My Oncologist was more concerned with the platelet counts and the hemoglobin counts than he was with the red and white blood counts. I went through menopause six months after I turned 50 so i really can't speak to your situation about that. Here's hoping a combination of the B vitamins and the iron help your counts go up and you don't have to make that decision! Good luck and keep us posted.  

  • eihtak
    eihtak Member Posts: 1,473 Member
    #7
    judyv3

    I too was severly anemic before, during, and after treatment. I received blood regularly and several iron infusions. I am a little over 3yrs post treatment for Stage3b anal ca, and am now able to maintain normal levels with taking just 1 ferrus sulfate daily. I remain NED as well.

    I had  considered a hysterectomy as well as two years ago I was diagnosed with breast cancer. My mom died from ovarian cancer and grandma of pelvic cancer of unknown origin. Since there is a breast/ovarian ca link I went through genetic testing to see if I carried the mutated gene. Although I do not, I am still considered in a higher risk category for ovarian ca. That being said.....for now I have decided not to risk the hysterectomy based on a couple doctors reccomendations. They feel that the chance of complications is quite high due to the excess stenosis and internal radiation damage along with scar tissue due to colostomy surgery. It is always lingering with other thoughts in the back of my head though.....should I or shouldn't I???

    I bet you will feel great and blood levels will balance out in time.....the IV infusions made me feel wonderfully energized!!

    Be well.

    katheryn

  • judyv3
    judyv3 Member Posts: 143 Member
    #8
    eihtak said:

    judyv3

    I too was severly anemic before, during, and after treatment. I received blood regularly and several iron infusions. I am a little over 3yrs post treatment for Stage3b anal ca, and am now able to maintain normal levels with taking just 1 ferrus sulfate daily. I remain NED as well.

    I had  considered a hysterectomy as well as two years ago I was diagnosed with breast cancer. My mom died from ovarian cancer and grandma of pelvic cancer of unknown origin. Since there is a breast/ovarian ca link I went through genetic testing to see if I carried the mutated gene. Although I do not, I am still considered in a higher risk category for ovarian ca. That being said.....for now I have decided not to risk the hysterectomy based on a couple doctors reccomendations. They feel that the chance of complications is quite high due to the excess stenosis and internal radiation damage along with scar tissue due to colostomy surgery. It is always lingering with other thoughts in the back of my head though.....should I or shouldn't I???

    I bet you will feel great and blood levels will balance out in time.....the IV infusions made me feel wonderfully energized!!

    Be well.

    katheryn

    eihtak

    Katheryn,

    Thanks so much for your response.  I am just going to believe that the iron treatment will help and I will achieve the balance that we're looking for.  A little energy infusion certainly couldn't hurt!  I am glad to hear that your levels are good now with a little supplement.

    I have been so lucky that this was discovered and things feel into place the way they did.  Things could have been so much worse. 

    Again, thanks so much for your thoughts.

  • qv62
    qv62 Member Posts: 434 Member
    #9
    judyv3 said:

    eihtak

    Katheryn,

    Thanks so much for your response.  I am just going to believe that the iron treatment will help and I will achieve the balance that we're looking for.  A little energy infusion certainly couldn't hurt!  I am glad to hear that your levels are good now with a little supplement.

    I have been so lucky that this was discovered and things feel into place the way they did.  Things could have been so much worse. 

    Again, thanks so much for your thoughts.

    judyv3

    hope this all works out, thinking good things for you !

  • judyv3
    judyv3 Member Posts: 143 Member
    #10
    Update

    I had my third iron treatment yesterday and bloodwork.  Some of my bloodwork results were online for me to look at and my white count has gone up to 3.0!  The iron levels were not on there but I would imagine they've gone up too.  I am starting to feel the positive effects of this treatment (a little more energy)!

    I also went for my second check with the colorectal doc and had another anoscopy - I seem to tolerate these very well - no sedation or anything and not too uncomfortable, haha - only someone who has been through what we have could ever say that!

    Things are (dare I say?) GOOD.  And I do know that could change in a moment but that's true for anyone.

    Good thoughts and positive vibes to all.

  • mp327
    mp327 Member Posts: 4,440 Member
    #11
    judyv3 said:

    Update

    I had my third iron treatment yesterday and bloodwork.  Some of my bloodwork results were online for me to look at and my white count has gone up to 3.0!  The iron levels were not on there but I would imagine they've gone up too.  I am starting to feel the positive effects of this treatment (a little more energy)!

    I also went for my second check with the colorectal doc and had another anoscopy - I seem to tolerate these very well - no sedation or anything and not too uncomfortable, haha - only someone who has been through what we have could ever say that!

    Things are (dare I say?) GOOD.  And I do know that could change in a moment but that's true for anyone.

    Good thoughts and positive vibes to all.

    judyv3

    All good news!  That's great.  I hope your blood levels will all be back within normal limits real soon.  I'm glad you're feeling good!

  • judyv3
    judyv3 Member Posts: 143 Member
    #12
    mp327 said:

    judyv3

    All good news!  That's great.  I hope your blood levels will all be back within normal limits real soon.  I'm glad you're feeling good!

    MP327

    Thanks!  I am sending all good thoughts, wishes, prayers and vibes to you.  We travel together.

  • mp327
    mp327 Member Posts: 4,440 Member
    #13
    judyv3 said:

    MP327

    Thanks!  I am sending all good thoughts, wishes, prayers and vibes to you.  We travel together.

    judy

    Thank you so very much!  I hope you have a great weekend!

  • sandysp
    sandysp Member Posts: 868 Member
    #14
    oncology hemotology and anemia specialists

    I was advised to go to a hemotologist who is not an oncologist. 

    So I have an appointment with a hemotologist who specializes in anemia in August.

    I had a hysterectomy due to cancer in 1976 so my wbc is not low because of any female type issues. But apparently the WBC is behaving in an abnormal manner. A bone marrow check was mentioned to me but I am hoping simpler tests will do.

    I will let y'all know if the abnormal wbc activity has anything to do with the radiation or would have been this way in any event. Mine jumps up to 5.2 and down to 2.5 and back up to 3.5 or 4 then repeats.

    Lord knows, no one has ever checked my blood so many times as these last few years.

    Sincerely,

    Sandy

  • mp327
    mp327 Member Posts: 4,440 Member
    #15
    sandysp said:

    oncology hemotology and anemia specialists

    I was advised to go to a hemotologist who is not an oncologist. 

    So I have an appointment with a hemotologist who specializes in anemia in August.

    I had a hysterectomy due to cancer in 1976 so my wbc is not low because of any female type issues. But apparently the WBC is behaving in an abnormal manner. A bone marrow check was mentioned to me but I am hoping simpler tests will do.

    I will let y'all know if the abnormal wbc activity has anything to do with the radiation or would have been this way in any event. Mine jumps up to 5.2 and down to 2.5 and back up to 3.5 or 4 then repeats.

    Lord knows, no one has ever checked my blood so many times as these last few years.

    Sincerely,

    Sandy

    Sandy

    I really hope it isn't necessary for you to have a bone marrow biopsy and tht the hematologist can find out what's going on.  For a long time, my WBC was low and it would always freak out my internist, who suggested I see a hematologist.  However, the next time I had my blood checked at my oncologist's office, it was within normal. 

    I will think good thoughts for you and send up some prayers.  Please keep us posted.

    Martha

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