Immunotherapy side effects

  • 3 replies
  • 46 subscribers
  • 858 views

Hi everyone,

I'm having a bit of a wobble and thought I would reach out for some support on here.

I've been on Pembrolizumab as an adjuvant therapy since March and I am now feeling a bit sorry for myself. I seem to be collecting a new side effect after each session of immunotherapy. They picked up that I had I had lost adrenal gland function about 6 weeks ago, which was not pleasant, so I am now on steroids. Then 2 weeks ago they picked up that my thyroid gland is no longer working so I am now suffering the effects of hypothyroidism (I'm now on thyroxine). I swelled up like a balloon when I lost the thyroid gland and the symptoms of that have made me miserable. The swelling has really impacted my every day activities, and mobility and it is making me miserable.

Apparently I just have to wait for the thyroxine to start working and the clinician tells me it will be 6 weeks after starting to start to see a difference!

Has anyone else been down this road with pembro and feel able to share their experience with me? 

Trying hard to be hopeful!

LivingHopefully x

  • Hi,

    I suffer from an Under Active Thyroid.

    Many year's ago, when I was first diagnosed. I was put on a certain dose of Thyroxine. They then test your blood again for T4. It is a bit hit and miss at first, until they get the right amount of dose. They have to be a bit careful, as too much Thyroxine can have the opposite effect which is "Graves Disease " which is, a racing heart.

    I felt much better pretty quickly, if I recall. Hope this helps.

    Kind Regards

    Snellijw

  • Hi,

    i have had lots of side effects from immunotherapy, i have advanced renal cancer, spread to lung and lymph nodes.

    i am also a single parent (20 year old and 16 year old) and would really like to make contact with other single parents x

  • Hi! I know you posted a while ago, just wanted to say that I too lost my adrenal gland function because of my immunotherapy drug Novilumab. I'm used to managing the steroid doses now, but it was very scary at first. My blood tests last week showed a sudden plummet in my platelets count, which is being investigated by the hospital currently. I don't think of these as side effects in the normal sense, but as serious health conditions in their own right. At times, I wonder if it's worth the risk of having the cancer treatment, given that I am a definite stage 4. Having the cancer is enough to cope with, apart from all the worry of which strange side effect will happen next!

    I think all you can do is to have hope, and trust in your doctors. I hope things have settled with your thyroid, and you're not feeling as miserable now.

    Hugs! Kate