Long term treatment group

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Ok there’s are great support groups here but I found it hard to fit in to a particular group . I’m not terminal but I’m on long term treatment . With it comes all sorts of issues from time to time .Joyhis past month was hell . I have to be on tdm1 till stops working however I ended up in hospital for few days as spine was in bad shape from long term chemo effects … was so glad t that no cancer foJoyd in bones . However the drugs for to treat it were hilarious … diazapam for muscle relaxant lol plus plaquenil plus tramadol etc I never had diazapam in my life felt like I was on beer for the day my point is people really don’t get the pitfalls of long term treatment . You not terminal but you not free either and not secondary as I was classed as stage 4 from the when I failed on herceptin and on tdm1 treatment till it stops working . Just hard to know which group fits 

  • I am in a similar, although not identical, situation. My breast cancer treatment included a full year of different types of chemo and five surgeries, and that's on top of a diagnosis of one of the blood cancers. At the moment I am treatment-free but not phenomena-free, and my breast oncologist says that recovery, for me, will take double to quadruple the time it takes most people "thanks" to the huge amount of chemo and to having these surgeries in the space of one year. I am thankful for not having to do treatment at the moment but I am struggling, and there are no guarantees that the treatment "holiday" is forever. As far as breast cancer is concerned I am probably the same as everyone else who is counting time, but I also have the joy of not knowing if/when the blood cancer might pounce. So for me, it's the long haul too, although for different reasons.

    I am curious about something: since there are no mets, why the stage 4 diagnosis?

  • I had distant met to neck nodes while on herceptin so that’s why on tdm1 .. I was confused too