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  3. RonH


    Port - With so many blood tests and infusions ahead, definitely get a port.
  4. Roz- Definitely bring it to the attention of your Onc, however according to the lab results I receive, the "Reference Range" for TSH is 0.178 to 4.53 is with in the normal range, however I see on the internet, that there are other "reference ranges" such as 0.4 and 4.9 . It may depend on the specific lab, I don't know. I would suspect that being at or below the far low end, they would also check your T3 & T4 numbers. DFK - You are correct. As far as I am concerned the ONC/Labs should have been checking my TSH long before they actually started to. I started Durvalumab in early November of 2018 and the first time they checked TSH was in late May of 2019 and only then discovered that I had a TSH level of 44.03. (A check by my PCP back in March of the previous year had me at TSH=3.17, well within the normal range). Per my online readings, Durvalumab sending people into Hypothyroidism , or in some cases, Hyperthyroidism, is fairly common and therefore should be a fairly routine blood check when on immunotherapy. Tomm & Charles - As I noted in earlier posts, once started on levothyroxine, my TSH levels started dropping and after a short while, within10 days to 2 weeks or so, I could tell my energy levels had significantly increased. I am currently on 75 mcg, and working my way up to the proper dose. The results I have from 7/15 has my TSH down to 34.13. I was told by my Onc that they only test TSH once a month (i.e., every other Durvalumab infusion appointment), and normally only adjust dosages every 4 - 6 weeks, so this past Monday 8/12 they should have checked my TSH / T3 / T4 levels again. The results are not back or published to where I can get to them yet and it's been 5 days now. Part of the problem is that the lab that my Onc uses is in their Oncology facility but is not able to do the TSH testing there, so that lab sends the samples off to their corporate labs in another state for those tests which delays things. I believe my Onc and I will have a heart to heart discussion during my next appointment with him regarding blood testing, to include why I am not getting my Cortisol level tested. I have noticed that between the ONC, then the Infusion Nurses who access my port and draw the blood samples, then the lab on site itself (who as mentioned is a independent lab with their equipment in the ONC's facility), and then the main lab actually doing the thyroid panel analysis , that you have to keep an eye on them to confirm that you are actually getting all the tests that the Onc ordered. Of course during the next appointment on a Monday, I will formally be getting my latest CT and Brain MRI results back from him (from the scans the Friday before), and I am also scheduled for Durvalumab #19 that day, so I may have other things on my mind depending on what I hear. Robert - Congratulations. Enjoy your well deserved rest but be sure to check in and keep us updated. Thank you so much for leading the way and providing so much advice and for sharing your experiences with us who are not far behind you as well as with those just starting out in the journey. -Ron
  5. Sad to hear this, I hope your Mom will get well soon asap. Choosing between mom and baby is the hardest thing any girl can do in her life. But you have to be strong in this case, as if you lose your emotional balance you will lose your baby too. According to me you should call Elder care people, who are ready for taking care of elderly parents at home NJ, they will be there all time with your mom to care for her.
  6. Wow, and to think my last TSH reading was 0.19. Having it re-checked soon because quite obviously, it's low. Hang in there everyone!! Ro
  7. Tomm and Charles Great on #9 done and TSH levels going south. If memory serves me correct, you, Charles and Ron H had high thyroid levels picked up later than sooner??? As Tomm has impressed upon all of us, TSH should be regularly monitored with treatments. I have TSH and Cortisol drawn every two weeks, some of my fellow infusers have them drawn every four weeks. Only when TSH is abnormal high, will T3 and T4 levels be done. TSH-Thyroid stimulating hormone is secreted from your pituitary gland. TSH stimulates the thyroid to produce T4 (Thyroxine), a thyroid hormone. When your T4 is low ( a side effect of Durvalumab) the pituitary gland senses that and increases your TSH levels to produce more T4. You may still have a high TSH level but your synthroid medication is replacing your thyroxine (T4).......just a little FYI. For me, it helps to know some of this minutiae. My fatigue seems to come and go and I can’t nail it to any particular day. Peaks and valleys so pacing myself works for me. My voice remains hoarse and I still lack pitch and volume. Been on Prilosec (for acid reflux) almost a month with no improvement in my voice. ENT referral for vocal chord evaluation not until November. I've taken it upon myself to discontinue my steroid inhaler that was prescribed for me after my pneumonitis diagnosis in May. A common side effect of inhalers are voice hoarseness and my inhaler is the only change in my regime since starting Durvalumab in January. I'm grasping at straws here but willing to eliminate the obvious. Getting #16 Durvalumab this coming Tuesday with DLCO pulmonary test. I've been pushing myself with exercise and even though I know that my lungs is not a muscle, I truly hope my pulmonary function has improved.....we shall see. Carry on. With Blessings and Gratitude, DFK
  8. Charles, I was started on 75 mcg when they saw my TSH 139 ... I checked Dr. Google to see how long it takes to start working and it said some people start to feel the effects in a week or two ... or a month or more. I choose the week option. I was very low energy for a week and then... better every day now. Hope your new higher dose gives you a speedy recovery
  9. Tomm, WOW! 113 is still way high. I couldn't plan on getting behind the wheel of a car with my levels that high. My TSH has come down to 40 something and getting a little closer to normal but clearly still affects my overall abilities, strength and energy levels tremendously. Just had to up the replacement hormones to 75 mcg. per day before number 11 on Tuesday and evergy has improved a little but still has a ways to go. good luck and glad to hear you are improving.
  10. Infusion #9 done yesterday with new energy update on blood work from #8 TSH was 139 and now 113 the others numbers got better too but this is the one that messed with me a lot. I started taking vothyroxine , (synthroid) and within a week I felt much better and ready to go to the Farmers Market tomorrow. Everyone NEEDS to have your thyroid checked!! Fatigue very light and no side effects that I know of.. enjoy your summer
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  12. Just saw that there was a "Clinical Trial" section here. Anyone with updates or info on KRAS in NSCLC?? (Specifically KRAS G12 D, not the G12C) thanks, Ro
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  14. Lin wilki


    To place a port or not? What’s the consensus of the group
  15. Good morning - I just posted to the new member site My name is jenn. My mom has newly diagnosed iiia lung ca. No symptoms. Otherwise healthyexcept some hypertension. She starts cisplatin / gemzar today. 1st cycle / 1st treatment with hopes of shrinking for surgery. About me: 35 y/o daughter ... currently 6 months pregnant, working full time, raising a toddler with my hubby an hour away from her 😥 I read forum about joining her for her long treatments (no one wants prego at the infusion center), my OB really doesn't want me doing 1hr each way. I'm just so torn. How can I help her and take care of myself? She has my dad and friends but I want to help but feel so limited - like I'm choosing my baby over her. If she does have surgery (praying!) ... it will he 2hours away so I'm not sure I can go with being so close to delivery. I dont want to stress her out but she us so stuck in her head right now sometines i think her (and my dad) forge rim pregnant. I understand they hhcaveca big problem on tgeit hands but u have a big worry too! Any suggestions to help copeor get to assist her/ him
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