• jen-cueva

    Member
    January 26, 2023 at 12:39 pm

    Hey, y’all, this is an older post; however, it’s informative. I just reread the article and didn’t recall that certain chemotherapy drugs have the potential to cause PH.

    This is important for those with a history of cancer or autoimmune diseases treated with chemo. I thought of you both when I reread this, @brendad53 and @wheeldog. I know there are a few others I’ve missed. Please give this article a read. What are your takeaways?

    • roger-bliss

      Member
      January 26, 2023 at 2:56 pm

      I didn’t find anything on the list that I am taking. I am getting infusions. They call any infusion for cancer “chemo” at UCSD, but I am getting Gazyba (obinutuzumab). It’s not mixed with anything else except saline.

      The jury is still out if I have PH or not. Nobody can figure it out. They are hoping the infusions will improve my breathing as the lymph nodes shrink.

      • Colleen

        Member
        January 26, 2023 at 4:09 pm

        Hey @jenc, wow, this is an important topic. I can’t believe we haven’t touched on this since 2018! Great find and worth revisiting.

        @wheeldog maybe the cancer and treatments is triggering some mild PH? I know how frustrating it can be when a positive diagnosis can’t be reached. You are probably to the point that one way or another you just want answers!

        From what you have shared in the past it does sound you have a great team following your care and doing their best to figure things out for you. Fingers crossed you don’t have PH and if that is the case, I hope you will remain a forum member. We are invested in your well-being whether you have PH or not.

      • roger-bliss

        Member
        January 27, 2023 at 9:22 pm

        Some of the side effects from Gazyba have the same symptoms as PH. Not sure how to tell which is which???? I am still short of breath, but the coughing is gone.

        What I like about the doctors at UCSD is they tell you that they are guessing and don’t know for sure. Most other doctors speak with authority, are sure their diagnosis and send you home with a bottle of pills to fix it.

      • Colleen

        Member
        January 28, 2023 at 11:42 pm

        @wheeldog I believe honesty is an example of top medical care! My son always had his PH doctor and team scratching their heads. There were so many times they flat out told us, “Well, we have never seen this before!”. His doctor would often consult other doctors throughout the Country for their experience and opinion. His honesty and willingness to reach out to other teams never failed my son. I’m so glad you have that kind of care too!

      • jen-cueva

        Member
        January 30, 2023 at 10:19 am

        Well said, @colleensteele! Honest and telling patients they need to talk to other colleagues to confirm or discredit their thoughts is a sign that the healthcare providers (HCPs) are top-notch!

        That’s awesome that Cullen’s doctor would reach out to those who were experts around the country. I wish more HCPs would do the same.

        Just as we learn from each other, they can too.

      • jen-cueva

        Member
        January 30, 2023 at 10:16 am

        Hi @wheeldog, I agree that almost every doctor at UCSD I’ve encountered has been open and honest. I had the infusion nurse yesterday ask me about my PH and infusions as she was not too familiar with PH, especially someone having it long-term like me. She immediately told me how sorry she was, but her eyes were huge, and she was amazed that I had been diagnosed about 18 years ago.

        I also had a PCP in Texas that was the same; he didn’t know much about PH but was willing to learn and call and ask colleagues when he ran into questions, especially if my issues were PH or something else at the times of concern.

        I respect open and honest communication much better than a “know it all” who can be harmful when we have such rare diseases.

        I know it;’s difficult when the symptoms are similar, and no one has a clue. It is pretty much learning as you go. Plus, no two people are alike with these rare diseases.

        It sounds like Tyvaso was the main culprit of the coughing. Would you agree? I’m grateful you have such great care. Take care, buddy.

      • roger-bliss

        Member
        January 30, 2023 at 2:51 pm

        I quit taking Tyvaso last March. It did cause some coughing when I was taking it, but it quit. Didn’t start coughing again till July. Doctors figured from CT scans my lymph nodes were growing against my windpipe and causing it.

      • jen-cueva

        Member
        January 27, 2023 at 12:40 pm

        Hi @wheeldog, I hope the infusions will shrink your lymph nodes, making it easier for you to breathe. How has your breathing been lately? Are you in AZ or Alaska?

        I can see how the enlarged lymph nodes could cause SOB. So, maybe you don’t have PH after all. But as @colleensteele says, you want answers.

        As I googled these questions, I found this from the American Cancer Society about SOB from enlarged lymph nodes. Please give it a read and share your thoughts. Has your oncologist also mentioned this as a cause of your breathing difficulties?

        Cancer.org

      • roger-bliss

        Member
        January 27, 2023 at 9:53 pm

        I am still short of breath. Just like everyone else, I have good days and bad. We moved the “tin tent” to Yuma, so I am a little closer to SD. Latest CT scans at home look like it was the enlarged nodes causing SOB. Doc here isn’t 100% sure. Just playing it by ear with treatment as he doesn’t know what else to do neither does the PH doc.

        I have chronic lymphocytic leukemia (CLL) is a type of cancer that starts in white blood cells (called lymphocytes) in the bone marrow. Symptoms are similar to the link you shared. I wouldn’t need any treatment if it wasn’t for my SOB. My blood tests have been normal.

      • Colleen

        Member
        January 28, 2023 at 11:35 pm

        @wheeldog it’s a shame that if it weren’t for the SOB wouldn’t need treatment. I apologize, can’t remember if you are on oxygen? If so, does it help and if not, would you consider using it as needed?

      • roger-bliss

        Member
        January 29, 2023 at 2:27 pm

        My oxygen levels are always in the mid to high 90’s no matter how bad my breathing is. <span class=”kY2IgmnCmOGjharHErah”>Albuterol  and oxygen do nothing for me. I would use anything that works. Prednisone is about the only thing that does work. I only take it when my breathing is bad. I don’t want to get hooked on it.</span>

        No matter how bad I get, my vitals are normal. My hands are usually cold so the O2 meter doesn’t usually work right. The fluid in my lung hasn’t come back since last May.

         

      • jen-cueva

        Member
        January 30, 2023 at 10:58 am

        Aww, so you and Marry Ellen are still in the AZ, just closer, @wheeldog. I know you had many couples there at the previous spot. Did some of your other “snowbird” buddies move to Yuma, too?

        I’m happy to hear that no more fluid has accumulated since May! It makes sense that enlarged lymph nodes could cause SOB. However, I wish that would improve some, so you are symptom-free for the most part. Let’s keep that going.

        Aww, the necessary evil, the steroids. I am just finishing up my steroid dose pack for bronchitis. They certainly do the job, but we don’t have any snacks left in our condo.

        My hands stay cold, too, because of anemia, etc. however, my oxygen is ok at times at rest, however up moving around is when mine drops the most. It’s challenging when your vitals are good, but you continue to be short of breath.

        Please check in and keep us posted, buddy. Say hi to Mary Ellen, too.

      • roger-bliss

        Member
        January 30, 2023 at 2:56 pm

        One of our snowbird friends bought a house with a RV spot on it. We are using the RV spot as it has all the hookups on it.

      • Colleen

        Member
        January 31, 2023 at 12:18 am

        That is so nice @wheeldog and I’m sure those friends are also available to offer help or assistance if ever you and Mary Ellen ever need it!

      • jen-cueva

        Member
        January 31, 2023 at 10:13 am

        That’s so cool, @wheeldog. If you need anything, I’m happy to hear that you are near your snowbird friends. How has Mary Ellen’s health been?

        It’s also a quicker drive for you to go to your appointments at UCSD coming from Yuma. Please keep us posted when you go back with any updates.

        In the meantime, enjoy life until it’s time to get back to Alaska and a busy work season.

      • roger-bliss

        Member
        February 1, 2023 at 3:43 pm

        Mary Ellen is doing fine. I have 4 more infusions left then I will be done. Should finish up in mid May.

      • jen-cueva

        Member
        February 2, 2023 at 12:44 pm

        Great to hear that Mary Ellen is doing fine, @wheeldog. Take care and let me know which days you are in San Diego and how long you’re here in case we can plan to meet up.

        So, you’ll be back in Alaska after May? That’s longer than your usual stay, right?

      • roger-bliss

        Member
        February 2, 2023 at 10:00 pm

        Right now I have appointments Feb 14th and March 14th. I don’t have the appointments for April and May yet, but assume they will be mid month if we stay for them. We arrive the day before the appointment and leave the day after. We still stay at Camper-land on Mission Bay.

        We usually go back in March. We still haven’t decided to get the April and May infusion in SD????? Might get them back in Alaska????? Gonna get too hot here in Yuma. Playing that one by ear.

      • jen-cueva

        Member
        February 3, 2023 at 12:53 pm

        Hey @wheeldog, well, maybe we can meet up one of those days. That’s funny because one is Valentine’s Day, my PH diagnosis day, and March 14 is our wedding anniversary.

        I know it’s a coincidence.

        I’m sure you’ll figure it all out as to when to head back to Alaska. I bet work will be waiting for you. Please keep us posted, and enjoy a nice weekend.

  • terese-tuohey

    Member
    January 27, 2023 at 9:32 am

    Although I have never had to take any of these meds, I was on Evista for osteoporosis back in 2013. I was also traveling a lot via plane.  By 2014, I was finally diagnosed with a Pulmonary Embolism, which eventually caused my CTEPH PAH.  I still think that if Evista didn’t cause the clot, it certainly exacerbated it.  There is a history of blood clots with that drug.

    Of course, I was taken off it immediately.  The sad part is that is WAS working for my osteoporosis.  I tried something else and that kicked my asthma into high gear.  I’m not on anything right now for my osteoporosis, except calcium , vitamin D, and lots of walking for weight bearing exercise.    I have no idea what my GYN will tell me this trip to have my bone density tested.  I’m not really keen on any of those long term injection meds.  Not with my allergies!

    • jen-cueva

      Member
      January 27, 2023 at 12:46 pm

      Hi @tervo, I’m sorry that you had to stop Evista, especially since it was helping your osteoporosis. It must have been frightening to have the blood clots not long after starting this medication.

      Like you, I suspect the Evista caused the clots or certainly exacerbated them then. This medication had warnings that it could cause strokes and blood clots.

      Isn’t it frustrating when we have certain allergies and reactions to treatments that maybe could offer us relief? I hope your bone density test this time comes back without any progression. Please keep us posted when you have it done.

      Have a great weekend, my PHriend. Are y’all enjoying the Florida sunshine?

  • terese-tuohey

    Member
    January 28, 2023 at 8:31 pm

    Oh, yes! I’m enjoying FL immensely, especially when I get the snow reports from Michigan!

    I did want to add that in spite of all the ‘Stuff” in my life, I turned 75 this week!  My loving Hubby spoiled me rotten!  He sang Hppy Birthday to me when I awoke, had 4 dozen ( that’s right 4!) roses by my breakfast plate, along with a sweet and funny card.  Then he took me out to dinner in the evening, followed by champagne and cake  and another card (loving and mushy) when we got back home.  What would I do without that man?  He’s such a help for me.

    I will keep you posted on my next medical check up and my bone density test, which won’t be til this summer.

     

    • Colleen

      Member
      January 28, 2023 at 11:31 pm

      Happy Birthday, Terese! You’re husband obviously loves you so very much! Wow, 4 dozen roses!!!

      Would you be interested in letting me interview you via email for a Valentine column about marriage when you have PH. Share how your husband helps and supports you? I interested please email me at [email protected]

    • jen-cueva

      Member
      January 30, 2023 at 11:02 am

      Wow, Happy birthday, @tervo! What a guy! I am s grateful that you were spoiled rotten, as you deserve by your loving hubby.

      Not a dozen, but four dozen roses! We’ll keep him, hehe.

      It sounds like you two are perfect for each other. How long have you been married, if I may ask?

      Like you, I don’t know how I would make it without my hubby’s support and love. Thanks for sharing, and yes, sunny Florida, while it’s snowing in Michigan, must be lovely!

  • terese-tuohey

    Member
    January 30, 2023 at 1:59 pm

    Tim and I will have been married 15 years this coming October!  We met at a dance, so he’s my prince charming!

     

    • Colleen

      Member
      January 31, 2023 at 12:22 am

      Oh funny @tervo, I forgot to ask in the interview how you both met. I sent another emailing asking but here is my answer! What year did you meet?

    • jen-cueva

      Member
      January 31, 2023 at 10:09 am

      Wow, what a real-life Prince Charming you’ve found in Tim! I’m grateful you have such a wonderful man to love and enjoy life with. Do you both continue to enjoy dancing?

      I loved dancing and karaoke pre-PH. After PH, I have been known for dancing and singing karaoke with my O2 bag. However, those days are few and far between now. However, it’s funny that Manny was never a dancing type. (Shh- don’t tell him I spilled the beans.) but now, he sings and dances all around the condo, hehe.

      I am excited to read the interview that @colleensteele shares. Enjoy each moment, my PHriend.

  • valeriekv

    Member
    February 12, 2023 at 1:15 pm

    A very useful article! It’s good that you updated it.

    Interferon-alpha is mentioned in the article. I think that interferon-beta also belongs there. I have read two scientific articles describing such cases. Two women had PH after prolonged use of interferon-beta.

    • jen-cueva

      Member
      February 13, 2023 at 12:06 pm

      Hi @valeriekv, I agree because I have read some similar articles. I will see what I can find about this link and share it.

      Here is one from the NIH. And, here is another one for you to check out from Journal of the American College of Cardiology.

      I hope you have a great new week, my PHriend.

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