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    • #27849
      Shannon
      Participant

      Hello everyone! I am in a state of shock and I just have to share my news and maybe some of you have some answers? I have recently started seeing a new Rheumatologist because my Interstitial Lung Disease and my PH are caused by Autoimmune Disease. Specifically, Sceladerma and Lupus. Well today I found out after running all kinds of blood work and new tests, I have a rare cancer called Waldenstroms?? How weird is that! I have never heard of it till today. It’s very rare. It’s basically bone marrow cancer. The good news is I can start treatment as soon as insurance approves everything. The doctor is hopeful that it will reverse my lung damage and possibly help my PH. All this time I have felt like death with bone pain and back pain. I can’t even walk most days! And I finally have a answer! It’s bitter sweet! Here I got diagnosed years ago with Autoimmune diseases and I never questioned it. Then this new doctor I thought was crazy ordering all these tests. And she probably has saved my life. Without treatment most don’t live long with this type of cancer. It just amazing how life can be such a roller coaster ride! I just want to walk and not have pain every single day.

    • #27867
      Jen Cueva
      Moderator

      OMG @shannon4jk, I am sorry to hear about this, but yet it sounds like it offers answers and a bit more hope. I have only heard of this once ever and not from any PHriends; it worked in nursing. I am happy that you have more answers for the bone pain specifically. I hope and pray that you can get the treatment soon and see what that may help with.

      You are correct; I am sure that this is bittersweet. Just know that we are here to support you along this new journey, aka rollercoaster ride of life. Please keep us posted on when you can start the treatment and how to best support you.

      I am sending love, hugs, and prayers your way from Texas.

    • #27873
      Shannon
      Participant

      Hi Jen! Thanks for responding back to me. At least you have heard of it. I am still trying to understand everything. I have to be admitted to the hospital later this week to start treatment so I will keep you posted. I just can’t believe how crazy this is. To be misdiagnosed with Sceladerma for over 15 years! Not one doctor ever questioned it? And I have seen a lot of doctors. My son wants to sue everyone lol. He’s so angry that I have been suffering for so long with never any real help. But I have my faith that everything happens for a reason. And I have a grand baby coming…. I have seen the first ultrasound and am in love. It’s amazing how I could see every little toe and fingers. So anyway I have to keep pushing forward! I hope all is well with you. Big hugs to you! Have you had any good bike rides lately? Take a long ride for me.

    • #27882
      Colleen Steele
      Keymaster

      @shannon4jk I wish life would cut you a break! I am so sorry to hear about this cancer diagnosis. I am not familiar with Waldenstroms. I’m assuming it is a rare form of cancer? I bet you never thought another diagnosis could possibly help relieve your PH? I’m praying for you and your medical team as you tackle this new challenge. Please keep us updated.

    • #27887
      Jen Cueva
      Moderator

      Hi @shannon4jk, I can imagine that this is all still such a shock and overwhelming, to say the least. Going 15 years and being misdiagnosed has to be frustrating in many ways. I can understand your son’s anger at the previous doctors. That tells you just how much you mean to him, too.

      I am so happy that you could see the ultrasound of that new grandbaby. That must be a huge boost of strength for you. This is all exciting and also shocking at once., You have dealt with so much within the last 6 months; it is unbelievable.

      My thoughts and prayers continue to be with you. Yes, keep us posted when you can. WE want to support you as you go through another journey.

      No bike ride last weekend, so hoping this weekend, I may get to go. I will certainly think of you. I am sending big hugs to you from Texas.

    • #27908
      anne
      Participant

      I got diagnosed with Waldenstroms about 25 years ago. I was not an old skinny 70+ year old male. I was a 50 year old normal size female. I just had my seral nerve taken out and tested. Also, had something important taken out from either my hip or spine and it showed Waldenstroms. I haven’t died and it’s 7 year span has gone and keeps on going. I’ve never had any real problems and will one who will die with it not from it. My nose does bleed a little every day.

      I went to a meeting with people from all over the world and loved hearing about their disease. Nice, nice guys.

    • #27909
      Shannon
      Participant

      Anne thanks for telling me this! Is this what cause your PH? What sort of treatment was given to you for Waldenstroms? They did a bone marrow biopsy on me and a lot of blood work. Yes I also have nose bleeds I thought it was a side effect from PH meds. That’s great you have lived so long with it! This gives me hope. Any info you can give me I appreciate it. This is all new to me.

    • #27910
      Shannon
      Participant

      Colleen yes I wish for a break to. At least with medical problems anyway. The last 3 years have been the worst! But somehow I still am breathing. Lol I prayed for away to ease my chest pain and be able to comfortably breathe and walk again. And this is what I was handed so maybe after Chemo for Waldenstroms I will be able to do that? God works in mysterious ways. That’s for sure!

    • #27956
      Jen Cueva
      Moderator

      Thinking about you @shannon4jk and hoping that you will get some relief soon. It has been a rough road for you, for sure. I am hopeful and praying that your treatments will be helpful in many ways. Keep us posted when you can.

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