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Jane Lee

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Everything posted by Jane Lee

  1. Hi Dura recipients Just thought I would give an update. I can hardly believe this. My lung specialist and the radiation specialist both consider that the tumour in the bottom lobe of the right lung has died from the radiation and chemo. But the radiation has caused that lobe to collapse so they can't actually see the tumour. I am assuming that because there is no sign that the tumour has spread or progressed that they think it is dead. Apparently. they do not do anything about the partially collapsed lung because it is too damaged from the radiation. Accordingly, the Dura kills any new tumours that might try to form because there is a very high likelihood of re-occurrence. At this stage, I refused to think about re-occurrence. What a shock, I read all these things on Dr Google about syringes and tubes to try to extrapolate the air or fluid in the lung to help it re-inflate and they don't do any of that in radiation cases - they just simply leave it alone. Wow, no oncologist for six weeks and the radiation specialist doesn't want to see me again. Only have to do the Dura once a fortnight and a blood test once every four weeks. It feels so surreal. I feel I am getting a second chance at life so I am staying on my current regime - no alcohol, no cigarettes, keeping processed foods to a minimum and as much walking as possible. They have even told me I can begin to lose weight (need it especially after putting on so much with the predisone). I actually wondering whether as a beginner to this lung cancer stuff that I am just being naive?????? Thank you all for your love, support and encouragement. It is so lovely to hear from people in the same predicament as yourself. I must have a look at all of the ASCO abstracts. Kind regards Jane Lee
  2. Kleo sorry to hear you have so much pain. I'm on the Durvalumab and have joint and muscle pains also but I have always put it down to the hypothyroidism. I never realised it could be a Durvalumab reaction.
  3. Thanks to all of you I feel so much better having people who are going through the same/similar treatments. It is such a relief to be able to express view/have discussions etc. with people who are experiencing similar issues. Thanks to you all I don;t feel so alone. My family is great and are very supportive but just hearing from you guys makes the fight worthwhile. Take care everyone. Kind regards Jane Lee
  4. Hi Barb The reason I will have to stop is that being on the Durvalumab is part of a clinical trial. Otherwise the cost is $180,000 (Australian per year). Because it is a 12 month clinical trial, stoppages don't count in the 12 month period. It is not 26 treatments (i.e. 26 fortnightly treatments) it is a strict calendar year trial. So the researchers can't afford to have people stopping and starting on it as it could skew their results. It is all the government was willing to fund so I guess to some degree I am in their hands and have to be grateful for small mercies. According to the research thus far, there has been two deaths because of patients who have had pneumonitis and been on predisone who have also been on durvalumab. So over here they are very cautious about patients having predisone when they are being treated with durvalumab. They also don't know when is the optimal time to stop the durvalumab i.e. is it six months, nine months, or 18 months. I hope this clarifies it a little more, I;m not a doctor so I hope I have explained it Okay. Given my partially collapsed lung I am concerned that on Wednesday the oncologist may put me back on the predisone but I am praying he won't. How are you feeling any way? I hope your feeling better. Kind regards Jane Lee
  5. Hi Charles My understanding of the predisone and durvalumab mix is that the two drugs counteract each other, hence neither work well together. (I'm not sure exactly how that works) . However my Onc. has told me that the Durvalumab stays in your system for up to six weeks. Whereas the predisone leaves you system very quickly. Because the predisone is an anti-inflammatory it is often better to get whatever that it is being used for under control in the first instance. The issue is that the predisone is a steroid and is so addictive. I've been told that if I have to go on the predisone again that the Durvalumab will cease completely. I don't know what happens after that. I am going to fight tooth and nail against ceasing the Durvalumab as I am fully aware that the Durvalumab is actually working for me at present so I don't want it to stop. Kind regards Jane Lee
  6. Hi Charles My thoughts are with you I have had some slight ups and downs with the durvalumab and been on and off the predisone. At this stage, my lung has partially collapsed but they don't seem too worried about it, so I have taken the view that if the onc isn't concerned then I am not going to be either. I will keep you in my prayers and hopefully it will all work out okay. Kind regards Jane Lee
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