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Hi from Zimbabwe

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Hello everyone.

I do belong to other forums, but those are about bass fishing and tackle. Wanted to join here, to give my experience on the journey I am about to embark on, and to hear of the experiences of others,

I am 67 years old, and have always been in great health. Was a smoker for nearly 40 years, and quit 11 years ago.

Purely by accident, the doctors discovered I had a tumor in the lower right lobe. Had 2 biopsies, and a PET  scan. Adenocarcinoma, NSCLC  stage 4, metastasized into Cervical spine at C1, the ribs and sacrum.

I have the rare  gene, so am ALK positive. My oncologist, Professor Rapoport of the Rosebank Oncology Center in Johannesburg South Africa managed to have me approved by Novartis, for clinical trial of Ceritinib (Zykadia). The meds arrive in a couple of days here in Zimbabwe, as I am unable to travel to South Africa for the treatment. I'm expected to go down in around 6 weeks time for a further scan.

I would like to hear from others who have been on Ceritinib, rather than chemo, as to what your experience has been like, and how long some of you may have been on it. 

Hope you are all staying home, and keeping safe.

Best,

Terry. 

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Hello Terry, 

Nice to meet you!  I also have the ALK gene, was a healthy never smoker who was diagnosed after a bout of pneumonia. I had a persistent and progressive cough that went misdiagnosed for months because no one is looking for lung cancer in a 51 year old competitive athlete.   I had mets to the spine, ribs and right hip as well.   

Most of the ALKs are taking a drug called Alectinib, it is indicated as first line treatment here in the US.  There may be one or two people on the ALK Positive FaceBook page that took Zykadia.  The FaceBook group has over 2,000 members world wide.  ( I don't do FB).   There's also a website www.alkpositive.org which has some helpful information.  What's curious about ALK is almost everyone is diagnosed at Stage IV as there are typically no symptoms until the disease has progressed.  

Zykadia is in the same drug class as Alectinib, overall its a very effective drug. My cough disappeared after one dose.  Most of us have experienced fatigue and significant weight gain (20+ pounds).  Constipation can be a real problem, so a high fiber diet becomes really important.  

The discovery of these drugs called TKIs are a game changer for us, the ALKs are generally healthy other than the cancer (isn't that weird?)  In fact my lab work has never looked better.   Eighteen months later I'm doing really well.  The bone mets are gone, my lungs look normal, my oncologist thinks there is only scar tissue left in my lung.   

ALK is indeed very rare, there are two of us on this Forum, while I'm so sorry to hear about your diagnosis, this is a wonderful group of people I am so happy to call my family. 

Michelle 

 

 

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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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Welcome Terry,

I was diagnosed Stage 3A NSCLC (AdenoSquamous) in the Spring of 2018. After all the chemoradiation, and then being put on Immunotherapy (Durvalumab) for 8 or 9 months and then showing signs of progression, I convinced my ONC to have me biomarker tested. This resulted in finding out that I was PDL-1 Negative and ALK+. I was then switched over to the Targeted Therapy TKI Alectinib. Some side effects such as fatigue and shortness of breath I still have, along with constipation being my major complaint. I also have become very anemic while on Alectinib, and had two recent iron infusions which made me feel much better. A high fiber diet and a mild laxative such as Senna helps with the constipation. My suggestion is to make sure that your ONC stays up with the blood tests and request/demand that they be done on a regular basis, even if you feel good. Some of the things tend to creep up on you and then you find yourself treating other ailments in addition to the NSCLC (Over the past two years due to the treatments, I have developed medication induced thyroid issues as well as becoming anemic).  

Well enough about me. As Michelle mentioned, there are a few members here that are ALK+ such as Michelle and myself, so feel free to ask any questions. There is a private group on Facebook that is strictly for ALK+ patients and their caregivers. It is a very active group with around 2,000 members, many of which are international but I don't see any members from Zimbabwe yet. Please go to www.alkpositive.org and their private Face Book page for "ALK Positive Lung Cancer".  To gain access to the Facebook Page, first go to the www.alkpositive.org webpage. Follow the links to fill out the registration, then within a day or two, you will be granted access to the ALK+ Facebook page.  Note that many create a special facebook page first that limits the personal info, but I chose to use my real FB page. Then within 1 week you MUST introduce yourself on the ALK+ Facebook page or your access will be removed. They normally send you a reminder first. This FB page is full of very experienced and knowledgeable people and many of the topics are at an extremely high technical level. Several of the members have direct access to and contact with some of the top researchers and Oncologists around the world. The page has a search function so you can search out various topics of interest that has already been discussed. I will note that they are somewhat quick to tell you to search first, before asking a question that likely has been discussed many time before. Not too sure I agree with this, but I also understand not filling up the pages with the same discussion over and over again. Anyway, if you are ALK+, I do highly recommend joining that support group on Facebook. There are likely 10 to 20 posts every day with a wealth of information. There is also a membership map that you can locate members in your area that are also ALK+. As I mentioned, the group has members from all over the world and I'd say about 50% of the posts are "international". Placing your name and location on the map is recommended, but not required.

Anyway, welcome to group and feel free to reach out at anytime.

Ron

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Hi Terry, 

Good to hear from you!  Please keep us posted on the how the trial goes for you.  Be particularly mindful about the fatigue and your skin tone.  Initially, I had really severe fatigue and then my dentist pointed out to me my skin looked a little yellowish.  My medical team thought I was fine, but the lab results proved otherwise, elevated liver enzymes.  (I've had this dentist for 10 years so she was a better assessor of my baseline!).  Anyway, I had a brief drug holiday, five days, then resumed treatment at a lower dose.  It's important to know that these drug therapies are one size fits all dosing, then you get adjusted which in no way affects the efficacy of the drug.   After my first six week scan the bone mets were gone and the primary tumor shrank more than 50%.  Some people have no evidence of disease at the six month mark (seriously YES!!), while most of us have a "chipping away" experience where the drug whittles the cancer away.   

I don't know how the health system works over there, however there are other treatment options available as well.  The odds are in your favor with science on your side! 

Michelle 

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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.

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Hi Terry, when she goes to sign up for the Facebook Alk+ page, make sure she identifies herself as a caregiver. The membership is screened and limited strictly to ALK+ patients and their caregivers only. Like I say, most seem to create a new facebook page with very limited info on it, for confidentially reasons I suspect. Although obviously a social media, this Facebook page is tightly controlled and the "social aspects" of it are extremely limited. It is primarily an exchange of medical information, advice, recommendations and experiences. Much of it is so technical that it makes my head spin. 

Looking at the ALK+ Facebook membership map (once again, placing name and location on the map is strictly voluntary), the closest ALK+ person to you is over in Namibia. 

-Ron

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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.

 

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Thanks Ron. I'll bear that in mind. 
I am good at technical with fishing reels. Not so much with medical jargon.

Terry.

 

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Terry- Michelle will be able to provide a better answer, however these ALK+ TKI medications are a Maintenance Medication, not a cure. While the tumors may shrink and even disappear it is not normally considered that you will be or are cured. Typically you must take these TKI's until you show progression, which many will do so after some time period. Some have been on them for years with no progression, and some, only months before progression. Stopping the TKI's will very likely result in a very quick progression of the cancer. The ALK+ cancers also tend to mutate and find a way around the current TKI meds. The good thing about the second and third generation TKI's is that they penetrate the blood/brain barrier and help reduce the possibility of metastasis to the brain. When progression does occur, depending on the progression and where, another TKI may be prescribed, or if we're real lucky, a cure has been found.

-Ron

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Hi Terry, 

Ron is correct, the medication is for maintenance, I’ve been taking them for 18 months.  My labs are monitored every six weeks and my CT scans have been spaced out to four months.  It was a very gradual spacing out of visits. Once you get through the first few months, the transition to maintenance mode happens and ALK is treated like a chronic condition.  
 

You know another thing to keep an eye out on is how your feet & hands feel, especially if they start to feel swollen.  I have to take a water pill & potassium five days a week due to water retention.  My shoe size didn’t change but none of my shoes fit the same way so I wear crocs. 
 

I agree with Ron the FB page is very technical however there is another “regular” group on FB called ALKies Unlimited started by a woman in Kentucky, USA.  That’s more along the lines of a support group.  
 

Believe it or not one the the big challenges of ALK is that we look so healthy, people will forget you have cancer.  Great news in that no one will give you “the death stare” but you will need to get really good at guarding your energy buckets.   
 

How far is Zimbabwe from Johannesburg?  We looked at the globe to get a sense.  Ask away anything you want! 
Michelle 

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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. 

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Terry -

By the time I was found to be ALK+, Alectinib had already been approved by the US FDA as a First Line Treatment in 2017 for ALK+ NSCLC here in the United States. Also as of May 26, 2017 the FDA also approved Ceritinib for first line use here. Therefore for at least myself, the ONC's were already prescribing these second generation TKI's so the clinical trials were already over. (I believe there are some clinical trials ongoing where they combine these TKI's with other treatments to see if that improves survival rates). There is also a third generation TKI available if or when these second generation drugs start to fail. It is called Lorlatinib (Lorbrena). I don't know, but I suspect your ONC and the manufacturer is calling your Ceritinib treatment a clinical trial because it may not yet be approved in Zimbabwe or South Africa as a treatment. (That is purely a guess on my part).

Yes I must buy the medicine, but my insurance covers most of it since the medications have become FDA approved and are no longer "experimental". (I still work full time and therefore have decent insurance). The before insurance cost for Alectinib is about $15,000 USD per month. The manufacturer does have a copay assistance program as well, so my out of pocket expenses are minimal now. The manufacturer also has a program to help those uninsured but I am not aware of the details. I am not too sure about next year when I turn 65 and have to go on the government run Medicare program here in the US.

Stay in touch.

-Ron

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Hi Terry,

Same here for me. I have private health insurance which pays for the treatment.  I personally wouldn’t hesitate to do a clinical trial in the future. 
 

There is hope for many of us with lung cancer. With the ALK gene, as Ron said, we have a couple of treatment options in addition to traditional chemo.  This is really a scenario where we potentially have many good years ahead of us:

https://ecancer.org/en/news/15242-patients-now-living-a-median-6-8-years-after-stage-iv-alk-positive-lung-cancer-diagnosis
 

While targeted therapy is the best route, IV maintenance chemo with Alimta can be effective too.  Try not to think about the pills being the only option.  Many of the ALKs cited in this article were on Alimta for a few years before targeted therapy.  
 

Ron- I’m 53 and will transition to Medicare next year (Social Security Disability) I figure our copays will be about $700 a month after the deductible. I spent yesterday  on the phone with our legislators with the American Lung Association.  We learned there are two bills for Cancer Drug Therapy (HB 1730 & S 741).  If you have some time call or email your representatives to get them to support the Bill. Our Congressman didn’t know about the House Bill!  Power of the phone to preserve our retirement savings!!

Michelle
 

 

 

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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, 

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Hi Terry,

Perfectly understand the time zone issue. Regarding the MRI's, it probably varies greatly between patients and cancers, but I've only had two. The first during my initial diagnosis and staging determination in early 2018. The second was over a year later when I showed signs on a CT scan and a PET Scan of progression. A lung tumor that was thought to be eliminated by the chemo and radiation, started to grow again (per a CT and then confirmed by a PET Scan), and a new lymph node became involved (but the original ones regressed). The second brain MRI indicated still no brain metastasis, but the new lymph node involvement eliminated the possibility of stereotactic radiation to kill the lung tumor. So it is my understanding is that the brain MRI's are for initial staging and when metastasis is suspected. If someone also has brain tumors, I suspect the MRI's are more frequent. My understanding is the CT's and PET scans do not work well on the brain, hence top the Brain MRI's. (I truly hate the brain MRI's as I am mildly claustrophobic). When the time comes, let me know and I will let you know how I get through the MRI's. I have CT's every three months, normally chest only.

I never heard of anyone saying to avoid milk and milk products but I do know from experience that cheese certainly does not help with the constipation issues. Other than that, that is news to me. In fact, for the Alectinib, they recommend taking it with a high fat meal as it helps with the absorption. I usually have something with cheese or butter before taking the Alectinib. You should check what they recommend with the Ceritinib.

My ONC has always advised that time is of an essence with cancer treatments. In fact he said it was up to me, but back in 2018 he recommended that I cancel my vacation plans for the following month so I could start treatment as soon as possible. But we are all at the mercy of the system so we just do the best that we can do, but I wouldn't voluntarily delay things, but I wouldn't panic either over short delays. The risk of getting COVID-19 by traveling now probably outweighs the risk of a short delay with treatments. (Just my opinion as an engineer, not as a medical professional).

Later - Ron

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Hi Terry, 

No need to apologize for anything ever in this group.  We get it and are glad you can be a part of us irrespective of the time zone! 

OK- about the FaceBook group.   Most of the members are under the age of 50.  Here in the US it was discovered the "young ALKs" upon diagnosis  had a higher presentation of  brain mets therefore they have brain MRIs more frequently.  For the rest of us, if there were no brain mets upon diagnosis then the brain MRI interval is every six months.  The reason for this is the second generation TKIs we are taking penetrate the blood brain barrier pretty well providing very good protection against brain mets.  

I totally understand the concern about the drug delay.  I only had to wait four days and it was enough for me to really be on edge.  Hopefully this will provide some piece mind, ALK is generally considered a slow spread disease.  Once the meds get going, they work really fast.  

As for milk, and milk produce.  There's a fair amount of controversy as to what to eat when you've been diagnosed with cancer.  The doctors are not well versed in nutrition, the dietitians were often trained decades ago and aren't up on the latest and greatest of targeted therapies. 

When I was diagnosed, I had two oncologists, one medical and the other one integrative.  The Integrative Oncologist's job was to figure out how to address the side effects of the TKI.  As Ron and I said, constipation is a real problem.  Unfortunately I had to eliminate all milk products from my diet and the the constipation was resolved.  There is a school of thought that milk products create internal inflammation which makes it easier for the cancer to grow.  I looked at the NIH studies myself and saw mixed results.  I gave it up gradually, the last thing to go was the half and half in my coffee, boy that was really hard! 

On these TKIs, water retention as I said before is an issue so now you will need to watch your sodium intake like a hawk.  Sodium in loaded in a lot of things.  I try to stay below 1,000 mg of salt.  Breads, wraps and anything packaged is loaded with salt. 

My integrative oncologist gave me a sugar goal too-.all of the food/drinks have less than six grams of sugar per serving.  

Believe me none of this happened overnight.  At the time Alectinib was pretty new so not a lot was known about the side effects.  It was mostly trial and error (mostly error!). 

Since Ceritinib and Alectinib are the same drug class, I'm willing to assume the side effects are going to be very similar (as was the case for the 1st generation TKI).  I don't take my medicine on an empty stomach.  The package insert said to take with food and a high fat.   I screwed up exactly once, didn't eat enough food and was nauseous the whole day.  Never again. I need at least 700 calories to take this stuff.  Probably too much info, but better to learn from those of us who have been down the road!

Michelle 

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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.

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Hang in there Terry, keep us posted as best as you can.  Between Ron and I we've pretty much figured out to how find the "new normal"  No question is too small, the only dumb questions are the are the ones that don't get asked.  Trust your instincts, because ALK is so rare, we often know more than the doctors because our health is our full time job.

Here's a good resource that worked well for me with the TKI (especially the chia pudding- FIBER)

https://www.rebeccakatz.com/the-cancer-fighting-kitchen

Over the next few days, do what you love, that alone will help you to feel better!    Carry on. 

 

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2 minutes ago, Rower Michelle said:

Hang in there Terry, keep us posted as best as you can.  Between Ron and I we've pretty much figured out to how find the "new normal"  No question is too small, the only dumb questions are the are the ones that don't get asked.  Trust your instincts, because ALK is so rare, we often know more than the doctors because our health is our full time job.

Here's a good resource that worked well for me with the TKI (especially the chia pudding- FIBER)

https://www.rebeccakatz.com/the-cancer-fighting-kitchen

Over the next few days, do what you love, that alone will help you to feel better!    Carry on. 

 

Yea Terry, sounds like some fishing might be in order while you wait for your meds! 🐟

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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.

 

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Terry,

Am fortunate to have a wife who is both a registered nurse and dietician. My lung cancer is squamous cell and targeted therapy does not have effect on squamous. But, during chemo, my appetite departed. Everything tasted horrible, and I was losing weight at a time when I most needed calories to sustain life. Strangely, I found I could taste the peppermint in my toothpaste. That discovery resulted in Martha making peppermint chocolate ice cream and she added crushed peppermint Oreo cookies to boost calories. My weight loss was quickly reversed. 

I have a theory about lung cancer. Before targeted therapy and immunotherapy, many of us did not hang around long enough to report long term side effects. For example, my neuropathy called "taxol toes" was supposed to be short lasting; it is not short lasting in me. I also found constipation to be a real problem and while the milk fat in ice cream generated calories, it also caused constipation. So use laxatives to keep thing moving. One more thing. Know that your immune system is compromised. We are struggling with COVID-19 but with your white blood cells under chemo assault, any garden variety cold could put you down. Isolate to the extreme during treatment.

Stay the course.

Tom

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