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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.

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Terry,

Good to hear that your meds made it. As much difficultly as I have sometimes getting some of my meds mailed to me, I can only imagine having to get them across international borders, especially with the ongoing COVID-19 Virus.

Your wife Sherry probably saw the attached link on the ALK Positive Facebook site, but if not it is a very good paper on the various TKIs available for ALK Positive patients. Hope the link works.

https://www.uptodate.com/contents/anaplastic-lymphoma-kinase-alk-fusion-oncogene-positive-non-small-cell-lung-cancer?fbclid=IwAR0G1DwN_TImnsug5GLOHVbn_Ge2i_xrbXuNy0v9Bqo_9DDiKGCjFJaDZ4E#H3

Just be sure to have your local MD keep up with the various blood tests and keep an eye on trends, such as if your TSH is slowing rising, or your red blood cell count is slowly dropping. Not to say that either is a side effect of your meds, but things that slowly crept up on me over the past two years,

All the best. Keep us posted.

Ron

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That's good news Terry. Pretty soon I imagine patient in the Northeast US might start having similar issues with the airplanes grounding themselves in the hot zones.   

You might also ask for a consult with the cancer pharmacist about the best way to take the meds, or even better yet, the Pharma company usually has a pharmacist on staff for free patient support.  They're often a better source of info than the docs.  

So now it's forward march, down the hatch.  You're on your way to recovery.  Let's go! 

Michelle 

 

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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.

 

 

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Sorry I can't be of much help, I never experienced nausea with any of my treatments, not during the chemo, nor during the immunotherapy nor now with the TKI. In fact I actually gained weight during each. There were a few times I didn't feel quite right, but I would not say I was ever nauseous. But I've always heard not to take the TKI's on an empty stomach, one because the food helps with absorption of the meds and two because it reduces the chance of nausea. I would agree with you, follow what the manufacturer says. I have heard that sometimes one needs to take a short break from the meds to give their body time to adjust, but that should be  discussed with a medical professional. I had to take 5 weeks off after about a month on Durvalumab as my liver function tests (AST and ALT readings) went high. After they returned to normal I restarted the meds and never had a high reading again. Like you say, the body system may learn to deal with the meds after the initial shock.

Also can't help with the bone met pains as I am fortunate to not have met to the bones. Even if I did, and even though CBD oils are now legal in the state I live in for medical use, my employer has banned them. Since my job requires random drug testing, and termination would be a result of positive test results, I couldn't risk loosing my job and insurance. I do have a retired friend that uses CBDs for pain relief, he says it helps a great deal with his back pain (which is not cancer related).

All the best. -Ron

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Huh, taking a TKI on empty stomach.  Doesn't make sense to me either.  I didn't eat enough calories for breakfast exactly one time as a result, I was very nauseous the whole day.  The Pharma company is generally a much better resource than the local hospital staff.   Often times they have free patient support lines for queries.   Poke around and see if you can find. 

As for the bone met pain, I haven't had CBD oil, but it is something I would consider.  I had small scattered spinal mets which I receive acupuncture for.  I haven't had acupuncture since the virus hit and I do notice a difference.   I was suspicious at first, but I think acupuncture has been pretty effective at keeping the TKI side effects at bay. 

If you're interested there is a GO2Foundation Lung Cancer Living Room on Alternative Treatments posted on YouTube where medical marijuana is discussed in some detail.  It's legal in some of the US.  You might want to look at some of the other Living Rooms on YouTube, although we ALKs are in the minority there is sometimes pretty useful information.  

Another thing to try for bone mets in myofacial release message (no deep tissue message!) or yoga.   There's been some studies that yoga improves bone density.   I take calcium and vitamin d supplements.    All of my bone mets have resolved.   

 

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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.  

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Good Morning/Evening Terry, 

I'm really truly sorry about the pain you're experiencing.  The pain meds are just not helpful for many people, sometimes causing more problems than they solve.  I run the support group for the Kansas City Metro, mostly full of "mutants" like us.  All of our group members with bone mets have seen their pain significantly reduced/disappeared with radio-therapy.  It didn't take too many sessions to start to feel the benefits. 

Are  you also taking Zometa, the IV medication for bone healing too?  A lot of our group members receive IV therapy every three weeks.  

Weight bearing exercise may be on hold for a while, but after some time, you'll get into the normal routine.  So normal, you might forget to take your pills.  (I know, how can that happen right???  It does.).   Try to develop some type of visual cue or ritual to serve as verification that you have the meds on board.  

Carry on!

Michelle 

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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.

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Hi Terry, 

I told my husband Tim that I met a Brit ALKie in Zimbabwe who can not boil an egg properly, he got quite the chuckle out of it. He can't make a hard boiled egg, and forget about a soft boiled one. 

   Really do push for what else can be done to strengthen your bones, keep asking.  You could also contact the GO2Foundation here in the US that is very familiar with mutants like us,   https://go2foundation.org/about-us/contact/  Ask them what the US protocols are for ALK with bone mets.   Information is power, informed patients live longer.   @RonH knows this well.  He's fearlessly marches into his doctor's office armed with best practices.  

Under the heading of looks utterly ridiculous but helps to keep the blood circulating, here you go- it's called GiGong Tapping.  In the beginning of this I was willing to try anything, as long as there was some sort of science behind it that made sense. Here's a short video sample.  You can YouTube around Gi Gong and find some others.   

Tap your way back to good health!

Sleep well, as I get ready to start my day, 

Michelle 

 

 

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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.

 

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Hi, Terry, you can also call the Lung Cancer HELPLine for suggestions.  Here is information about this free service that is available for patients all over the world https://lungevity.org/for-patients-caregivers/support-services/lung-cancer-helpline  Hope you have a great Easter weekend!

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