macular degeneration from chemo- any one else?

fighting for mom
fighting for mom Member Posts: 96
edited October 2022 in Colorectal Cancer #1
Hi,
It has been awhile since I have posted about my Mom. Recap- she is 5 years post CRC re-section and chemo. CT scan this past month showed another year all clear which we are oh so thankful.

It seems that she continues to have one thing after another showing up from the chemo. She has been having trouble with her vision for awhile and went to get checked out. She has macular dengeneration as a result from the chemo- anyone else have this awful side effect? Her eye Dr. said there really isn't much to do but to see if it gets worse or not. Not really the encouraging info she was looking for.

She is unable to see street signs when driving and requires contrasting colors when reading,etc. She will be 64 in March and is hoping to do early retirement with COBRA coverage to get her through to Medicare at age 65.

She loves reading and quilting but they are pretty challenging for her right now. It is just disheartening. She is so thankful to be cancer free and alive but the chemo has taken and continues to take so much from her. She still has neuropathy, fatigue and now decreased vision.

I discussed that she probably shouldn't be driving...she doesn't have to re-take her test until 2014. She just doesn't want to lose her Independence with that too.

What to do???

Thanks,
Susan

Comments

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #2
    Dear Susan
    Sorry to hear of this complication for your mom. I have not heard that chemo can directly cause this condition, but it is related to immune system issues.

    The following site may be of some help:

    http://www.medicinenet.com/macular_degeneration/article.htm

    Also, it might be useful to find another doc who is particularly experienced with this problem.

    I can understand her wish to remain independent, but driving with deminished and uncorrectable vison is not just a hazard to her but others on the road. If her sight gets bad enough, any reputable doctor would pull her license even if before 2014.

    Hope that you and she can find some way to slow down the progression.

    Hugs,

    Marie who loves kitties
  • jen2012
    jen2012 Member Posts: 1,607 Member
    #3
    I'm sorry about your moms
    I'm sorry about your moms problems. My mother in law also had MD and had some sort of shots in her eyes once a month but she really couldn't drive. Please make sure your mom is legally able to drive still. Its does stink to lose that independence but it would be worse to kill somebody just trying to cross the street.
  • Ruffy7
    Ruffy7 Member Posts: 126
    #4
    jen2012 said:

    I'm sorry about your moms
    I'm sorry about your moms problems. My mother in law also had MD and had some sort of shots in her eyes once a month but she really couldn't drive. Please make sure your mom is legally able to drive still. Its does stink to lose that independence but it would be worse to kill somebody just trying to cross the street.

    Hello
    I work at an agency for the blind and visually impaired. Macular degeneration is very common and is a normal part of aging of the eye. Exposure to sunlight, smoking, and genetics are also factors in AMD. I've been working in this field for over 20 years and also never heard that chemo causes it. I would say the majority of my clients have this eye condition. The good thing about it is that no one goes "totally" blind from it, it only affects the macula (a spot on the retina), however, the macula controls all of the fine acuity, detail part of the vision so usually people with it have trouble seeing detail, reading, recognizing faces, but still have all of their peripheral vision. There are places that can help her. It isn't uncommon for eye drs. to say there is nothing more they can do (medically) but every state has agencies that work with people who have vision problems. Some are state agencies while others are non for profit private agencies. There are many things these agencies can do to help her cope/deal with vision loss. Feel free to pm me if you'd like me to get names/numbers of agencies in your state. Vision loss is a bummer... but many people live rich, fullfilling lives, raise families and work with it. Best wishes, Ruffy
  • Doc_Hawk
    Doc_Hawk Member Posts: 685
    #5
    Interesting
    I had my vision checked in August 2011 and got a new pair of glasses at that time. I have commented here in past posts that my vision is usually blurred and even doubled for a few days after chemo. When that happens, I can enlarge the text on the computer to read better, but can't read printed text and even captions on a movie on TV can be difficult to see. After reading this post, I think I'll make an appointment with an optometrist.
  • fighting for mom
    fighting for mom Member Posts: 96
    #6
    Doc_Hawk said:

    Interesting
    I had my vision checked in August 2011 and got a new pair of glasses at that time. I have commented here in past posts that my vision is usually blurred and even doubled for a few days after chemo. When that happens, I can enlarge the text on the computer to read better, but can't read printed text and even captions on a movie on TV can be difficult to see. After reading this post, I think I'll make an appointment with an optometrist.

    mom
    Thank you all for your comments! My Mom is quite stubborn. She still drove through all her chemo even when she shouldn't have. This is probably why she hadn't told me because she knew I would tell her I don't think she should drive. We already talkef about going for a second opinion. I am an occupational therapist and have worked with lots of low vision patients, but somehow parents can just be so stubborn.
    She did call me tonight and told me she is officially retiring Dec 9th. I am so glad she finally chose to do this! Dad will do the driving and she can enjoy life.
    Here is to second opinions!

    Thanks
    Susan
  • fighting for mom
    fighting for mom Member Posts: 96
    #7
    Ruffy7 said:

    Hello
    I work at an agency for the blind and visually impaired. Macular degeneration is very common and is a normal part of aging of the eye. Exposure to sunlight, smoking, and genetics are also factors in AMD. I've been working in this field for over 20 years and also never heard that chemo causes it. I would say the majority of my clients have this eye condition. The good thing about it is that no one goes "totally" blind from it, it only affects the macula (a spot on the retina), however, the macula controls all of the fine acuity, detail part of the vision so usually people with it have trouble seeing detail, reading, recognizing faces, but still have all of their peripheral vision. There are places that can help her. It isn't uncommon for eye drs. to say there is nothing more they can do (medically) but every state has agencies that work with people who have vision problems. Some are state agencies while others are non for profit private agencies. There are many things these agencies can do to help her cope/deal with vision loss. Feel free to pm me if you'd like me to get names/numbers of agencies in your state. Vision loss is a bummer... but many people live rich, fullfilling lives, raise families and work with it. Best wishes, Ruffy

    pm
    She lives in Iowa and works in Nebraska. I would love any info you can share. Not sure how to pm...
    Thanks, Susan
  • MikeElmoreTalks
    MikeElmoreTalks Member Posts: 1
    #8
    More on this topic thread

    I hope things are stabilized and OK with your mother at this point. I am going thru something similar with my mother bt she has not had chemotherapy yet and we aren't sure if he is going to hav to at this point. 

    She has macular degeneration already. I am wondering if you have any new knowlege of the relationship between chemo and macular degeneration and if it is perhaps known if chemotherapy can affect it negetively. Thank you for any reply you might be able to provide. 

     

    Mike Elmore 

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #9
    MikeElmoreTalks said:

    More on this topic thread

    I hope things are stabilized and OK with your mother at this point. I am going thru something similar with my mother bt she has not had chemotherapy yet and we aren't sure if he is going to hav to at this point. 

    She has macular degeneration already. I am wondering if you have any new knowlege of the relationship between chemo and macular degeneration and if it is perhaps known if chemotherapy can affect it negetively. Thank you for any reply you might be able to provide. 

     

    Mike Elmore 

    Mike..if you open a new post

    Mike..if you open a new post you may get more response.  I don't have any knowledge about chemo and m d , but interestingly, my mother in law had M D (no cancer) and they treated it with shots of Avastin, whitch is also used for colorectal cancer.

     

    good luck to you and your mom.

  • Chrissy1
    Chrissy1 Member Posts: 4 Member
    #10

    I have Had dry macular for seven years and just started chemo for breast cancer. The first treat ment has resulted in a significant worsening of my eyesight. Am wondering if it will clear up when the chemicals leave my body at the end or am i to be left legally blind by then?

  • Real Tar Heel
    Real Tar Heel Member Posts: 307 Member
    #11
    https://csn.cancer.org/discussion/comment/1696081#Comment_1696081

    macular degeneration, blurred or double vision can be the result of several things. It's best not to assume it's directly related to chemo, your oncologist is likely to say it isn't. Talk to your GP and eye specialist about it and have tests done. Also, check your blood glucose levels closely. The chemo could be indirectly affecting your vision by throwing something out of whack, and there may be something already out there to help. Your body may be telling you that's something going wrong, but you may address it while continuing your chemotherapy. Good luck

  • Chrissy1
    Chrissy1 Member Posts: 4 Member
    #12

    An calling my retina specialist on monday. I feel the damage is already irreversable. Am greatly disappointed in my chemo team as they were completely ignorant of the effects of chemo on macular degeneration when I asked them about it. This is not something that patients should have to learn the hard way!

  • Real Tar Heel
    Real Tar Heel Member Posts: 307 Member
    #13
    https://csn.cancer.org/discussion/comment/1696088#Comment_1696088

    I don't think some side effects of chemo are well-accepted outside of nausea, blood pressure/clotting and hair loss. Docs could say "Well, anything could happen and it often does so be ready." I would have been fine with that. Some people may not be fine with that.

  • Chrissy1
    Chrissy1 Member Posts: 4 Member
    #14

    That's a lackadaisical comment when talking about someone's life

  • Real Tar Heel
    Real Tar Heel Member Posts: 307 Member
    #15
    https://csn.cancer.org/discussion/comment/1696107#Comment_1696107

    I think it's more realistic than telling us you only have to worry about these things printed on this sheet of paper. No one said to me that I could develop diabetes as a result of chemo, but here I am with that diagnosis.

  • Ritha
    Ritha Member Posts: 2 *
    #16
    https://csn.cancer.org/discussion/249746/macular-degeneration-from-chemo-any-one-else


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