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    • #29985
      Colleen Steele
      Keymaster

      Forum member @wheeldog is struggling to find a PH treatment that doesn’t interfere with his Cancer treatments. So far he has tried Ambrisentan and Bosentan which has not worked out well for him.

      I believe we do have a number of members who have also battled cancer. Is anyone willing to share their experience and success with combined treatments?

    • #29987
      Jen Cueva
      Keymaster

      I have not, but a good PHriend of mine was treated for lymphoma, and she was on a calcium channel blocker and Letairis. Another PHriend with colon cancer was taking sildenafil(Revatio) when she had her cancer treatment.

      I am sorry to hear this, @wheeldog. Cancer and PH must be overwhelming, to say the least. I wonder if you can ask your PH team about any cancer treatments you may be taking to help with PH. Some research has discussed that some cancer treatments can be effective in treating PH, too.

      Is the cancer center where you are treated happen to be at the same hospital as your PH team? That would be helpful, if so.

      I know that I am not much help. I am sharing what I have heard from a few PHriends battling both.

    • #29995
      Roger Bliss
      Participant

      Thanks for starting this thread!!

      My cancer is CLL/SLL which is a form of leukemia/lymphoma. I am on Bruskinsa (Zanubrutinib) which is working well. My blood counts are getting close to normal and my lymph-nodes are going down. They say if you are going to get cancer, mine is the best one to get. The cancer doesn’t bother me unless I go off my gluten free diet and my lymph-nodes swell up. So far the hasn’t been a big deal once I figured out what was going on.

      The PAH and being short of breath is my main concern. I am on Tadalafil right now, and I can breathe better now than last fall. They are looking for something to supplement the Tadalafil.

      My PH team are here in Alaska and my oncologist is in San Diego. All 3 doctors have each others cell phone numbers and get along well. I will ask if there is a good cancer med that helps PH.

      I would appreciate any information of what drugs are using.

    • #30012
      Roger Bliss
      Participant

      Had a doctor appointment today. I am going to try Tyvaso. Hopefully that will work.

    • #30022
      Jen Cueva
      Keymaster

      Hi @wheeldog, I hope and pray that adding Tyvaso will offer you some relief.

      Is your Oncologist in San Diego or another location in California? I was going to mention that San Diego and UCLA both have PH centers. I would think they would want to be a part of the treatments that you are doing for your cancer. Have they mentioned having their PH team be a part of your care while there?

      Please update us and let us know how Tyvaso works for you.

      • #30027
        Roger Bliss
        Participant

        My Oncologist is at UCSD in La Jolla, CA. He has already said he can fix me up with doctors there if it is needed. My goal is to be able to head south this winter and be set up to make it through the winter without a PA doctor. We’ll see how that works.

        • #30029
          Jen Cueva
          Keymaster

          Hi @wheeldog, the PH team had previously seen me at UCSD in La Jolla, which is why I asked. They do have a wonderful PH team there. So, don’t hesitate if you need one while there.

          I, like @colleensteele, agree that having the doctors communicate across states is awesome. We do need more of this to improve patient care.

    • #30024
      Colleen Steele
      Keymaster

      @wheeldog I’m glad your team at home and your team in San Diego communicate and work well together. I wish it was possible for more people. Some medical professionals are not willing to share a patient with another facility.

      It worked out for my son too. We live in WA state but his primary PH doctor and transplant team where at Stanford, CA. His team in WA took excellent care of him when at home and never did anything without discussing it with Stanford first. That is how it should be…everyone looking out for the best interest of the patient.

      • #30028
        Roger Bliss
        Participant

        Glad things worked out well for your son. My heart doctor and lung doctor work well together. They keep the oncologist informed as to whats going on so they don’t cause problems with my cancer. Everything seems to be working well.

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