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Nanny

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Hi all,  I have been a member of Lungevity for a few years now. I have not shared much or been involved too much.  I have missed 2  Forums as they are virtual now and they seem to happen on the only weekends I am busy with family.  I do go through and read the blogs, other people's stories and advise.not but I have not shared too much.  I have always been a private/quiet person but I do enjoy people - a rather strange combination.  

I was diagnosed in Nov 2017 Adenocarcinoma of left lung, Stage 4, EFGR positive.  What a blow!  Prior I was a healthy 56 year old  health conscious, nurse, runner, lover of yoga&pilates, bicycle riding, swimming ,should I say very active. With  encouragement from my oncologist who told me  that I was a candidate for a trial drug Altruda, I started immediately. For the next few months I suffered from colitis - hospitalized 2 times, then my 3 month CT scan showed blood clots in my non effected lung, and a worsening in my cancer.  The trial drug was stopped and I was put on 2 chemo drugs IV given weekly for 2 months and then I was put on Keytruda for 1 1/12 years.  My joints became very sore and difficult for me to manage,  I was and still am being treated for chronic pain due to chest pain.  The pain meds did nothing for my joint pain.   I have been very lucky so far with 1 1/12 years of no new growth!  Last winter I started to have neck pain which I thought was arthritis.  About a month ago I started with whooshing sound mostly in my right ear but also now in left.  I have also started with headaches daily. The pain in my head is taking over my lung pain during the night.  I have been sent to a new oncologist/neurologist who has ordered a spinal tap for tomorrow, and a spinal MRI 6/13 with a follow up visit the next day as well as an appt with visit with an ENT with Audo & Tymp testing.  

Now I again am feeling scared and alone.  Unfortunately, I have been living a rather solitary life except for my hubby and my favorite buddy my dog.  I have not been able to work (even though I have tried) due to fatigue and stamina issues due to side effects from my treatment.  I try and keep things upbeat with my other family and friends.  Now it seems as if some people feel that I have done so well that I have beat the cancer and  I should be going on with my life.  I don't know maybe having a friend with Ca is a downer.  I try not to be. 

I plan to continue with following the blogs, updates and stories.  I hope I not only find some support for myself but I also would love to help anyone of us if I can.  Anyone have any input, thank you in advance for sharing.

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Hi Nanny, glad you posted. First let me say that I love your town. It's my favorite place in CT. My husband and I used to visit there and Mystic as much as possible when we lived in NY. 

Going through a new battery of tests and waiting for results will certainly be stressful. If you do need more treatment and are still EGFR+, you might be able to take a targeted therapy pill which can be very effective and well tolerated. I hope you get some quick answers from your new doctors. 

I have used a Caring Bridge site since my diagnosis in October 2019 to update family and friends about my health. I've found it easy to communicate my point of view, and people have been very supportive in that platform. If someone is uncomfortable dealing with their friend with cancer, they don't necessarily have to be face to face with me. Maybe this could be a resource for you. 

Please let us know how your tests go. We are here for you. 

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I'm so sorry you are worried, Nanny.  Hopefully there are other, non cancer related reasons for the pain and whoosing you are experiencing but it is a good thing they are being proactive and trying to rule everything out. Please keep us updated!

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Thank you. Will do!  I just finished my spinal tap and everything is OK except for a splitting headache. The procedure wasn’t that bad at all

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Nanny,

Welcome to the forums (again).  A negative test is always good news and just means that the search must continue to find out the reasons for all that is happening to you.  I can understand that you are scared, but as long as you are posting here you will not be alone.  You covered so much ground in your post and you're dealing with a number of ailments.  They could be cancer-related or perhaps they are not.  Either way you need to get these things addressed.  The good news is no growth in your cancer the past 1.5 years; the not so good news, you seem to have a myriad of symptoms that are robbing your health, energy and joy for life.  I cannot say that I've gone through what you have, but I would be interested in what might happen if you added Palliative Care personnel to your medical team.  I have heard of my fellow survivors here who have done that with good results.  You need to get all these symptoms sorted out and addressed individually so that you are in better shape to face the therapy you need to keep that cancer stopped dead in its tracks.

Lou

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