Best Helpful Content

  • i feel so alone

    I'm so sorry you have to experience this. Cancer is rough for all involved! I can't say I can relate to your exact situation but I just wanted you to know someone cares. I am 27 and have stage IV melanoma, but sometimes I think it is easier to have the cancer than watch someone you love be so sick. I don't know what I would do without my parent's help. I don't think cancer is something you can deal well with alone, but there are people out there to support you: family, friends, co-workers (mine have been very understanding), counselors, forums... You get the idea. Maybe the people around you haven't been in your exact situation but the only way to get people to understand is to talk to them about how you're feeling. Everyone deals with a cancer diagnosis of self or loved one differently, I hope you find your way.
    enakynnek
  • joint pain after AVBD?

    The thing that helps me the most is a hot bath when the pain is all over.  If it's just one joint I have a heat pack that works.  Exercise helps me keep the joint pain from acting up too often.  I'm a year out of treatment and it doesn't hurt as much.  Most of my pain is in my legs.
    enakynnek
  • RAI Side Effects

    My dr recommended to try benedryl for salivary swelling. I haven't needed to try yet because I am not currently experiencing any side effects as I had a very low dose rai on 12-17
    enakynnek
  • RAI Side Effects

    Hey Henry, Nice to meet you. I am sorry you are having unpleasant side effects from RAI. I have that as well. Because we had such high doses of RAI... we are going to have continuous problems with our salivary glands. Using heat packs help somewhat, unfortunality even though its so painful, sucking on the BRACH Lemon Drops will help. As my Doctor told me. Using Biotene mouth wash helps as well. I have a pdf that I can send you via email if you are interested in how to massage your glands.You should do this daily even though it is so painful. I suffer from salivary gland disease. 

    Unfortunality, for me my salivary glands are burnt and destroyed from both rounds of RAI.  If you are in NY I can give you my Doctors name. I am not trying to scare you at all. Unfortunality, DOCTORS don't tell you SIDE EFFECTS.I just really wish my surgeon would of told me the side effects before hand.

    The only option for me now is radiation or having my salivary glands removed. Both choices are extremely hard for me and very dangerous. But this just my case. I am not saying this will happen to you. I have been suffering with salivary glands since 2012. I have been on countless rounds of antibiotics for this. 

    I saw my Doctor last week and he said unfortunality salivary gland disease is permanent. In order to find out if you have salivary gland disease you really should get this procedure called " Salendoscopy".  Most DOCTORS DO NOT DO THIS PROCEDURE. But, this procedure really helped me figure out why I was having severe infections, swollen glands and so much pain.

    PLEASE PLEASE FEEL FREE TO EMAIL ME. I would love to give you the tips. I have them as a pdf. It is very helpful even though massaging the glands hurt. 

    I wish you the very best!!   My email is danimaria11@gmail.com  Please email me anytime.

    -Danielle 


    enakynnek