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    Greystone Park, Borrowdale
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  • Status
    Lung cancer patient/survivor
  • Interests
    Bass fishing. Rugby.

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  1. Good night Michelle, Tell your hubby that as our slang for Alcoholic is Alkie, that I am a teetotaler ! Learning to boil eggs is a challenge, I'll keep trying ! I will check out the GO2Foundation, and try this GiGong. Anything to help with this pain. My chest pain has increased immeasurably. Increasing the number of CBD drops in my nebuliser from 4 to 6. Doctor says I can take it whenever the pain becomes unmanageable. I prefer to stick t a 4 hourly regime. Happy Easter. Hope the weekend is great. Thanks my friend. Best, Terry.
  2. Good Morning/ Evening Michelle, Love the open ended choice of greeting ! When I saw the radiation oncologist for radio-therapy, she explained that the extent of the mets was too far gone to be of any significant benefit. No one has even mentioned Zometa to me, so I will speak to my Physician here for this. Would be great to be pain free, although the CBD does help. I still do stretching to keep the blood circulating, and walk around our garden to keep the cardio happy. On your positive feedback I can't wait to get some physical exercise. Being a "mutant" appeals to me Michelle. Often wondered why I was not affected by kryptonite !!! As for forgetting meds, that will never happen. I am so obsessed about taking them at the same time everyday , with food, that both Sherry and I set our timetables around them. Let's all carry on ! Best, Terry.
  3. Hello Michelle and Ron, I am sure that every one of us will have different experiences, so don't expect the 3 of us would be the exception. Took my meds yesterday with food, and feeling so more normal today. Definitely the only logical way to go. Can not fathom out why the pharmacist insisted they be on an empty stomach. Oh well, that will hopefully sort that hiccup out. The CBD oil I am use contains no THC so there is no HIGH, or addiction. I get it from a pharmacy, and it does help. I have been on Tramadol and Morphine, but they do not take the pain away. They also make me light headed, a feeling I am not at ease with.Each day I find that managing the pain is more important than anything else. I was doing Pilates and light weight training until recently, but was told by my radiation oncologist to be very careful of exercise, as my bones are compromised. She suggested wearing a neck brace when driving. In the recent past I was doing deep needle therapy for what I thought was a muscle spasm in my left shoulder. It turns out to be met pain. I will continue to read up on whatever information I can find, without overload, but you two have been a positive in my path to understanding and coming to grips with my disease. Thank you so much. Best, Terry.
  4. Hi Michelle and Ron, Appreciate your positive comments and advice. Funnily enough, I have asked my specialist physician that first found the tumor , to take on my care. The oncologist in Johannesburg has not said anything, so I am guided by the Novartis web site, and your guidance. I did speak to the pharmacist about taking the meds with food, and she was of the opinion it should be 2 hours before meals. Everywhere I have looked it says with food, so I'm going to go with the advice of the Pharma site. I spent some time digesting the information on that link thanks Ron. Will be interested to see what route I go after Ceritinib. Maybe carry on ad infinitum ! I sometimes feel like the oncologist has too much on his hands and leaves it to me to find out what the treatment entails. I'm on day 4 today, and felt very nauseous. I suppose as toxins build my system will learn to deal with them. The bone met pains are another story. What are your experiences, if any, with this. I'm on CBD oil, which is based on others experiences, and not any medical professional. You all be safe, and be well. Best, Terry.
  5. Hi Guys and Gals, Eventually received my Meds on Saturday, after a 2 week wait. Planes not flying during shutdown has taken it's toll on many. I started the course immediately, 2 hours between meals, as prescribed by my oncologist. The Novartis web site recommends that they be taken with food, so I am querying this with the onco. Had no reactions after the first two days, thank God. Wish me luck, as I move forward. Best. Terry.
  6. Hi Michelle, Again I am grateful for the comprehensive response to my queries. Sure sounds more and more like us ALK+ people are blessed. Your husband must be a good man to support you as he has. Us Brits are like that ! Love my coffee and tea, and can't find a sugar substitute that doesn't leave a horrible taste in my mouth. I hear you about sugar. My Sherry has enforced a NO SUGAR diet on me, and I am complying. I am sure I will adapt to my new lifestyle. Living in Zimbabwe, I have had to do this most of my life, for one reason or another. Survivors ! Thanks again. Best, Terry.
  7. Hi Tom, Thanks so much for the informative feed back. I was once in hospital for 3 weeks and had really bad constipation that was worse than the operation! A question I need to ask is, is Ceritinib considered to be a chemo drug ? Should I expect the white blood cells to be compromised ? Tom I have the sweetest tooth that is humanly possible, and I am completely off all sugars. Please tell me I can have ice cream during treatment 😉 Stay safe everyone. Best, Terry.
  8. Hello Michelle and Ron, Thanks for the positive messages. I will pass on the kitchen stuff to Sherry, I can't boil an egg properly ! Unfortunately all our waterways are shut down so no fishing, and no rugby to watch on television. I will have to watch repeats ! Being happy is something that comes naturally to me. Chatting with my Sherry, talking to my son and daughter and grand kids here and in Australia makes me happy. Have tons of friends to chat to, too. Continue to be patient Terry 😇 Best, Terry.
  9. Hi Michelle and Ron, You guys rock ! I have learnt more about what to expect and the positive results from you two than I did from my Onco and the patient navigator. I suppose the fact that I chose to chat about rugby with my Argentinian Onco, rather than ask pertinent questions was my fault. It was too big a shock when I was told, so my defense mechanism went into rugby chat. I was not asked to have a brain MRI, or told it may be necessary at a later date. Having had a number of MRI's in the past for my lumbar and cervical problems, I know what claustrophobia feels like Ron !!! Knowing nothing other than what I was able to garner from the Novartis web site left me lost in a sea of questions. The net is endless, but no so much for ALK+ patients. Finding this forum, and getting to meet the two of you has been a revelation. It looks like my meds are still stuck in South Africa as of Thursday, so expect they won't be here till next week now. Nothing much happens over weekends, especially in Africa. I will let you know as soon as they do arrive, and will speak to the nutritionist at my oncology center regarding diet. Want to do this as best as can be done, with as few side effects as possible. Thank you booth so much. Have a wonderful weekend, and chat soon. Best, Terry.
  10. Hi Michelle and Ron, Once again my grateful thanks for your advice. Yes Ron you are correct about Ceritinib not being registered in South Africa, I had to obtain permission from the South African medical council for the drugs to be permitted into the country for clinical trials. Still waiting on the courier to bring these up, as we have border closures that severely affecting customs clearance. Patients ! My wife, Sherry, noted that the Facebook group recommended that brain MRI scans are performed at regular 2 to 3 month intervals. Has that something you have experienced ? Seems a waste of resources to look for something that does not show on a PET scan. One of the proteins I enjoy is milk and milk produce. Been told its not good for cancer. The nutritionist at my oncology center said it was. Any comments ? As it's been six weeks since my initial diagnosis, should I be concerned by the delays I'm facing. I'm a firm believer in things happen for a reason. Due to 7 hour time difference, you will forgive me for being online at different times to you all. Grateful thanks, again. Best. Terry,
  11. Hi Michelle and Ron, Thanks again for the advice and guidance. I do understand that the meds are a treatment and not a cure. Perhaps an extra year of life could see advances in the health industry and a cure could be found. My ability to get tested and have scans done are an issue I will have to deal with, one day at a time. We are neighbors with South Africa, and here in Harare we are an hour and a half away by plane from Johannesburg. Did a couple of trips down last month, but that was before the Covd-19 shutdown. One last question,for now. Did you both have a clinical trial with your meds ? If so how long was this for. Then did you have to buy the meds, and if so were you covered by your medical insurance. I understand the cost of Ceritinib is around $8000 a month. Grateful thanks. Terry.
  12. Thanks Ron. I'll bear that in mind. I am good at technical with fishing reels. Not so much with medical jargon. Terry.
  13. Hi Michelle, I'm sad to say that the healthl system in Zimbabwe is very poor, hence the need to use South Africa for my diagnosis and treatment. Was supposed to travel down to start the meds, but with the Covid-19 pandemic, our borders are closed and I am unable to travel. My oncologist was good enough to agree to courier the meds up to me, and with a local physician will liaise over blood testing. It remains to be seen what the world looks like in 6 weeks time, and if I am able to travel. How long did you take your meds for Michelle. I was granted 6 months by Norvitis. Is it usual to go past the initial six months ? Questions. So many questions ! Cheers, Terry.
  14. Hi Ron, Great to meet you. My late father was also Ron. I am not a great fan of Facebook, or social media. Might ask my wife to join up, as she is more social than me ! I feel a close affiliation with others that are ALK+, as it makes us feel more special than mere mortals 😀 Appreciate the feedback and advice. Best, Terry.
  15. Hello Michelle, Thanks so much for the positive feed back with your experience. I'm already feeling more confident knowing that I can share information with others in my position. In my case I didn't have any symptoms. No cough or pain. Must admit to having serious skeletal pains, that were always considered to be sporting injuries/arthritis. Having lost nearly 40 pounds in the last 2 months, I am now a mere 240 pounds, so any weight gain is not a problem for me. Would appreciate following your progress. Wishing you a complete recovery. Best, Terry.
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