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Re-puporsed drugs to treat NSCLC, ROS1-positive

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Daniel
(@daniel)
Admin
Joined: 6 years ago
Posts: 1058
 
Posted by: @dng050

Dear @daniel and @jancom,

This is the medications and supplements my brother has been taking while the cancer progressed:


Medications

  1. Crizotinib, 200 mg/day --> on/off depending on liver values (typically he would take 200 mg for a couple of days, and then go off for about two weeks waiting for the liver enzymes to calm down)
  2. Tenofovir, 25 mg (for hepatitis B)

 

Supplements:

  1. Turkey tail mushroom, 1 500 mg/day
  2. Melatonin, 15 mg/day
  3. D-vitamin, 1 600 mcg/day
  4. Vitamin K2, 75 mcg/day
  5. Honokiol, 1 000 mg/day
  6. Milk thistle extract (Legalon), 280 mg/day
  7. Modified Citrus Pectin, 10 g/day
  8. Artichoke leaf extract, 1 000 mg/day
  9. R-alpha Lipoic Acid, 240 mg/day (has gone off this yesterday since my brother complained he was taking too many pills)
  10. Specialised pro-resolving mediators (SPM), 2 capsules

 

Salvestrols and co-factors:

  1. Salvestrols, 10.000 points/day [started 28.07.2020]
  2. Vitamin C, 2 g/day
  3. Magnesium, 350 mg/day
  4. Biotin (vitamin B7/H), 425 mcg/day
  5. Niacin (vitamin B3), 420 mg/day
  6. Riboflavin (vitamin B2), 20 mg/day

Our original plan was to keep the cancer under control with a targeted drug while seeking adjuvant metabolic/alternative treatment. But after having failed crizotinib, we have not been able to proceed to the second step seeking out adjuvant treatment. Ours hands are full trying to apply for another TKI. Thinking that we might not get another TKI approved, we have been looking at other options as well just to be prepared, like regional chemotherapy with dr. Vogl in Frankfurt, hyperthermia witg dr. Herzog (also in Frankfurt), and immunotherapy with dr. Ralf Kleef (in Vienna).

If travelling is ruled out, and there are no TKI for us, I was thinking of giving my brother what I have, which is LDN, mebendazole, metformin, atorvastatin, dipyridamole, hydroxychloroquine, and cimetidine - depending on what his liver can tolerate.  

Kind regards,
dng050

Dear @dng,

Thank you for the clarity on the status, treatments and supplements used at this point.

This is not a suggestion but sharing my opinion that may be good or not:

From supplements point of view, in my opinion, you are missing some tips of the arrow such as Curcumin high dose. I would also say EGCG but not in this case due to liver challenges.

From a dose point of view, only one is at an anti-cancer dose level, i.e. Citrus Pectin. However, there is so much less science on that compared to others like Curcumin. So I would not put all or most of my eggs in that basket. Same for Salvestrols. They are in the same category. I like them, I would use them, but I would say they are more of a nice to have than a must have compared to others.

My specific view on each:

1. Turkey tail mushroom - good dose - very good one - its a supportive one in my view (i.e. not the tip of the arrow) - expected to help activate Tcells

2. Melatonin - good supportive dose - to become "the tip of the arrow" people use it at much higher doses

3. Vitamin D3 - good supportive one - is this dose in mcg or in ui? If ui is very low, if mcg is very high

4. Vitamin K2 - good supportive one

5. Honokiol - good supportive dose

6. Milk thilste - I would use 1g/day to support the liver

7. Modified Citrus Pectin - already discussed above - a good one but a supportive one - cannot be turned in "the tip of the arrow" even if increasing further the dose 

8. No opinion

9. RLA - supporting liver

10. No opinion

11. Salvestrols and co-factors:

- Salvestrols good

- Vitamin C good but supportive

- All the others supportive

In conclusion, I think the above is using good elements but

- mainly supportive, either because of their properties or because of the dose

- the strategy behind these combinations is less clear to me

In order to improve the above, while waiting for the other treatments to be approved, I would focus on:

1. Define a clear strategy (maybe you already did it?). Examples of strategies I discussed on this website are ph, strategy, cholesterol strategy, energy depletion strategy, pro-oxidant strategy
2. In that strategy chose a few either as part of that strategy or as miscellaneous, that will represent your "tip of the arrow", supported by strong science and using them at higher dose
3. Add to that supportive elements such as D3, Milk Thistle, etc. for liver, immune system, etc.

In addition to this feedback/view, I also shared sometime ago some research results that could be relevant to consider. Some can be applied some not because of the liver conditions. Here they are:

Looking at the literature in lung cancer and repurposed drugs here is a list that stands out:

1. Metformin
Prognostic influence of metformin as first-line chemotherapy for advanced nonsmall cell lung cancer in patients with type 2 diabetes.  https://www.ncbi.nlm.nih.gov/pubmed/21523768
Clinical outcomes in non-small-cell lung cancer patients receiving concurrent metformin and immune checkpoint inhibitors.  https://www.ncbi.nlm.nih.gov/pubmed/31645894
Metformin Prolongs Survival in Type 2 Diabetes Lung Cancer Patients With EGFR-TKIs.  https://www.ncbi.nlm.nih.gov/pubmed/31409137
Synergistic effects of metformin in combination with EGFR-TKI in the treatment of patients with advanced non-small cell lung cancer and type 2 diabetes.  https://www.ncbi.nlm.nih.gov/pubmed/26341687
Effect of Metformin Plus Tyrosine Kinase Inhibitors Compared With Tyrosine Kinase Inhibitors Alone in Patients With Epidermal Growth Factor Receptor-Mutated Lung Adenocarcinoma: A Phase 2 Randomized Clinical Trial.  https://www.ncbi.nlm.nih.gov/pubmed/31486833

2. Simvastatin
Statin improves survival in patients with EGFR-TKI lung cancer: A nationwide population-based study.  https://www.ncbi.nlm.nih.gov/pubmed/28158206
The effect of statins on survival in patients with stage IV lung cancer  https://www.ncbi.nlm.nih.gov/pubmed/27565929
Statins associate with improved mortality among patients with certain histological subtypes of lung cancer.  https://www.ncbi.nlm.nih.gov/pubmed/30527197
A randomized phase II study of gefitinib plus simvastatin versus gefitinib alone in previously treated patients with advanced non-small cell lung cancer.  https://clincancerres.aacrjournals.org/content/17/6/1553

3. Itraconazole
Phase 2 Study of Pemetrexed and Itraconazole as Second-Line Therapy for Metastatic Non-Squamous Non-Small Cell Lung Cancer  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3636564/
Repurposing Itraconazole Loaded PLGA Nanoparticles for Improved Antitumor Efficacy in Non-Small Cell Lung Cancers  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6955961/

4. DCA
Inhibition of pyruvate dehydrogenase kinase 1 enhances the anti-cancer effect of EGFR tyrosine kinase inhibitors in non-small cell lung cancer.  https://www.ncbi.nlm.nih.gov/pubmed/30213498
Anti-cancer synergy of dichloroacetate and EGFR tyrosine kinase inhibitors in NSCLC cell lines  https://www.ncbi.nlm.nih.gov/pubmed/27514773

5. Clarithromycin
Significant survival benefit to patients with advanced non-small-cell lung cancer from treatment with clarithromycin.  https://www.ncbi.nlm.nih.gov/pubmed/9209786
Macrolides sensitize EGFR-TKI-induced non-apoptotic cell death via blocking autophagy flux in pancreatic cancer cell lines.  https://www.ncbi.nlm.nih.gov/pubmed/26718641
EGFR-independent autophagy induction with gefitinib and enhancement of its cytotoxic effect by targeting autophagy with clarithromycin in non-small cell lung cancer cells  https://www.ncbi.nlm.nih.gov/pubmed/25858318
Anti-cachectic effect of clarithromycin for patients with unresectable non-small cell lung cancer.  https://www.ncbi.nlm.nih.gov/pubmed/11786660

6. Retinoic Acid
The enrichment of cancer stem cell-like cells (CSCs) has been considered to be responsible for tumor progression after an initial response to epidermal growth factor receptor (EGFR) tyrosine kinase inhibitors (EGFR-TKIs) in patients with non-small cell lung adenocarcinoma (NSCLC/ADC)  https://www.ncbi.nlm.nih.gov/pubmed/32293355  Our findings suggest that combination treatment with ATRA prevents gefitinib-induced enrichment of ALDH1A1bright/CD44high CSCs and enhances gefitinib-induced growth inhibition of NSCLC/ADC cells.
Retinoic Acids in the Treatment of Most Lethal Solid Cancers  https://www.ncbi.nlm.nih.gov/pubmed/32012980

7. Bisphosphonate
Oral bisphosphonate use and lung cancer incidence among postmenopausal women  https://www.annalsofoncology.org/article/S0923-7534(19)34891-4/pdf

8. Mebendazole and Fenbendazole
Fenbendazole acts as a moderate microtubule destabilizing agent and causes cancer cell death by modulating multiple cellular pathways  https://www.nature.com/articles/s41598-018-30158-6

Other relevant drugs that may be effective against lung cancer: Tigecycline, Ceftriaxone, Sertraline and Fluphenazine, Imipramine and Promethazine, Trifluoperazine, Penfluridol, Potassium antimonyl tartrate, Mebendazole  https://www.hilarispublisher.com/open-access/drug-repurposing-for-the-treatment-of-lung-cancer–a-review.pdf

In general, looking at the drugs that may work and relevant mechanisms discussed in the literature I would say that there are two major keywords that require special attention in lung cancer:
– cholesterol / mevalonate pathway inhibitors
– angiogenesis inhibition

Indeed many of the above drugs such as Metformin, Simvastatin, Itraconazole, Bisphosponate fit the cholesterol perspective (or strategy) also discussed on my website here  https://www.cancertreatmentsresearch.com/reduce-cholesterol-in-cancer-cells-to-fight-cancer/

Here is another study indicating the same:
Lung cancer cells survive epidermal growth factor receptor tyrosine kinase inhibitor exposure through upregulation of cholesterol synthesis.  https://www.ncbi.nlm.nih.gov/pubmed/32123859  ketoconazole treatment inhibits upregulation of mitochondrial cholesterol and thereby overcomes EGFR-TKI resistance in lung cancer cells.

This is why, I would probably focus my strategy on cholesterol inhibition using drugs such as: Metformin, Simvastatin, Itraconazole, if possible Bisphosponate which can also help against bone mets (but comes with potential side effects), Dypiridamole and Valproic acid for the following reasons:

Inhibiting HDAC1 Enhances the Anti-Cancer Effects of Statins through Downregulation of GGTase-Iβ Expression.  https://www.ncbi.nlm.nih.gov/pubmed/28481295  Valproic Acid is a HDAC inhibitor  https://www.jbc.org/content/276/39/36734.full

You can always check drug interactions here  https://reference.medscape.com/drug-interactionchecker?src=google
The above are ideas but you always need to check for your specific case what could fit and what not.

Supplements acting on this (cholesterol inhibition) line are HCA, Citrus Bergamot, Lycopene, Flaxseed lignan extract SDG, Honokiol, Omega 3, Plant sterols.

Next to this I would also add Mebnedazole or Fenbenadzole as angiogenesis inhibitors. Stronger angio-genesis inhibitor is Thalidomide, also discussed on my website, but I think it’s much easier to start with Mebendazole of fenbendazole.

As “miscellaneous” I would consider Silver Solution as discussed here. It could help a lot  https://www.cancertreatmentsresearch.com/a-silver-bullet-to-kill-cancer/

There are indeed other strategies that could be tried and some depend on your access to intravenous treatments, but I think the above is already enough to think about. Please have a look and if you have questions please let me know.

I understand it’s a lot and there is is no need to consider all, but you may be able to select some ideas from the above and if possible discuss them with a health care practitioner in case he/she is willing to support with implementation.

I hope this helps and if you have questions please let me know.

Kind regards,

Daniel

 

 

 

 

 

 


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Daniel
(@daniel)
Admin
Joined: 6 years ago
Posts: 1058
 
Posted by: @dng050

Dear friends,

@jcancom, the articles you referred to looked quite intriguing. Ideally, my brother would have continued on crizotinib since he de facto has responded incredibly well on this drug. I am, however, a little bit intimidated by the experimental nature of those projects.

@daniel, our plan now is not paradigme shifting. Basically, we continue with the same supplements with some minor tweaks in dosing. E.g. my brother was taking 15 mg melatonin (liquid) at night hitherto, but today I am thinking about starting him on melatonin powder 40 mg. We will get answers next week whether our entrectinib application will be approved. Even if there is a positive outcome, we have to wait about 8 weeks for the meds. 

I will keep an eye on my brother during this waiting time. I will consider adding LDN. If his condition worsens, I might suggest to him that we go to Germany, either to dr. Herzog in Frankfurt, or to Vienna at dr. Kleef, to get "light" treatment in hope of containing the cancer. I was thinking perhaps IVC, IV curcumin, mistletoe, and perhaps hyperthermia, etc. to strengthen my brother's immune system, but no "big guns" like immunotherapy, chemo, or radiation. I am anxious that such treatments would push the cancer to mutate and, thus, render it resistant to entrectinib even before we have started on the drug.

So, basically this is waiting time for us, praying and hoping that the application will be approved and that the medicine will arrive in time for my brother. Fortunately, we have received some positive initial signals that the application will be approved, but nothing certain yet.

Kind regards,
dng050 
 

In addition to my last post look at this:

A doctor and lung cancer patient writing on this blog (CancerTreatmentsReserach) in 2017. Her name anne sofie boldsen https://www.cancertreatmentsresearch.com/unlocking-zincs-potential-to-fight-cancer/#comment-5656

We haven't heard from her after that but here is a talk she had in 2019 at an university in Denmark I think. It could help you get a bit more view on what others (even medical doctors) to treat themselves successfully. I just found the video after I wrote my last post and was nice to see that he is referring to some drugs I also included in my post. https://www.youtube.com/watch?v=bGO--keuHGA

Kind regards,
Daniel

This post was modified 1 year ago 2 times by Daniel

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Jcancom
(@jcancom)
Joined: 5 years ago
Posts: 558
 

@dng050, I completely understand what you mean about being intimidated by the experimental nature of the suggestions. Ideally everything would have multiple phase 3 trials and there would be a clearly defined path forward.

The problem is that almost all of the ideas that are discussed here are not in that category. 3-BP has been described as the most powerful single agent cancer treatment ever found and yet there is not even a phase 1 that has been started with it. Many of the other approaches that we discuss have even less clinical history.

With metastatic cancer, doing nothing and taking no risks is not a viable strategy. We have seen time and time and time again people who never even tried many of the highly reasonable and largely benign treatments such as citrate, vitamin C, Fenbendazole ... ... ... that are mentioned here. They wanted to be safe and carefully consider each of these. Vitamin C is high dose orange juice, it has been used for possibly upwards of a century in cancer. From what I understand D has his own home pharmacy stocked with treatments such as those.

Most of what we consider here could best be described as off-road. D has mentioned times in the middle of the night when he was not sure whether he had made a mistake in a treatment. There would be no one that could help if he had, he knew this, and yet he continued. It is good to be clear about this.

However, in this context, one can only base decisions upon rational judgment. Formulating crizotinib remains quite a strong choice. You know that crizotinib is effective for your brother. Also of importance you know that it is a targeted therapy. Does this not mean that it will only be active in cancer cells? Further, formulating it will direct the treatment mostly to the cancer cells. We have seen with other formulations that dose reductions of >100 fold have been achieved. With such tiny doses it becomes difficult to imagine that liver side-effects could emerge. You could always titrate up.

I hope that you find this suggestion helpful. I realize that you want to make the best possible choice for your brother and you do not want to make a mistake. However, in this choice no certainty exists. There is a veil of ignorance that exists for everything. The least uncertain choice would seem to be with crizotinib which has been through phase 3 testing and has been approved by the FDA and has shown to be effective for your brother. The formulations that I mentioned have been used (e.g., chitosan has been used for decades and is considered GRAS). The liposomes that Manuone mentioned also have extensive research behind them. I acknowledge that uncertainty does exist for how the treatment would interact given a new formulation. Such a change in formulation would likely require decades of clinical trials to establish safety and efficacy. This might be where you could carefully consider the risks and benefits without the aid of the results from such clinical trials. The choice here is not an easy one where some other treatment could be pointed to as having complete clinical trial information. For example, I do not believe that Fenbendazole has ever been clinically studied in cancer.     

I understand that it is overwhelming. Yet, sometimes when people want to be safe and reject good risks, they can wind up being less safe and take bad risks. As you noted ROS1 turbocharges the cancer cells; you need a strong anti-cancer rebuttal. Formulating crizotinib seems like a good risk to take. However, this needs to be a choice that you make in the night, just as with D, with the knowledge that not taking a risk can be just as dangerous as taking one. 

Best Wishes, J

  


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dng050
(@dng050)
Joined: 2 years ago
Posts: 46
Topic starter  

Daniel, I think dr. Anne Sofie Salicath passed away in the spring of 2020. I saw that in a Facebook post from Lars in Norway. Thank you for sharing her lecture, which I think had several interesting points. In one of her last posts on Facebook, apparently she made a mistake of having iron infusion, whereafter the cancer progressed significantly. The oncologists did not know of this connection and advised her on taking iron infusion to treat anemia.

With regards to curcumin, it is one of the supplements of which I have the most favourable impression of. But due to uncercainty as to whether it inhibits or induces CYP3A4, which also metabolises crizotinib, we have not taken it. Also, there was a finding that curcumin promotes tumor under certain conditions, which significantly heightened our caution.

Article: "Lung tumor promotion by curcumin"

@jancom, does Manuone sell the liposomes? Do you know how I can get in contact with him?


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Daniel
(@daniel)
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Joined: 6 years ago
Posts: 1058
 

Hi @dng050

Thank you for the update on dr. Anne Sofie Salicat. That is sad to hear. This often happens: cancer patients walk on a thin line from a health point of view and often hospitals make such mistakes that are enough for the cancer patient health to start rolling fast down. This is why I this whenever possible always is best to go to academic hospitals as the chance is higher that they know and care more about managing the patient and not the protocols.

Regarding Curcumin and CYP3A4 I understand your point. I will need to research more this area. There was a study here in the Netherlands indicating something in this direction (in relation to combining it with hormonal treatments for breast cancer) but the results were not conclusive in my view. But I agree, whenever there are doubts just skip. There are enough "tools" out there with good potential.

Regarding the study on Curcumin and tumor growth, I want you to know this: in science if you search enough, you will find an article supporting any statement you like. This is why when we are performing research we are looking for patterns not single data points. It's like looking at clouds of information and trying to understand which way they move. 

To give you a feeling on where this article you cited stands:

1. During the past 10 years there were 34258 studies on Curcumin according to PubMed
2. During the past 10 years the article you mentioned was only cited 15 times

Therefore this is an intensively researched area and in this easy context the article has a very low impact of 1.5/year. This means that the scientific community considers the results published in this article of low relevance.

Of course we have to consider any piece of info that comes to us (and keep it in mind in case we see it latter fitting to some patterns) but we need to assign the right level of relevance.

Kind regards,
Daniel

 

 


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Jcancom
(@jcancom)
Joined: 5 years ago
Posts: 558
 

@dng050, the discussion about Manuone's liposomes is one the below thread especially the 28/07.2020 8:06 post where Manuone provides answers supplied by the company about their liposomes. This company appears to have decades of experience with their product and have expert level knowledge about how they would interact in the body.

I still like chitosan, (because it dissolves in acid environments), though these liposomes are clearly intriguing. About all that appears to be necessary in terms of lab equipment is a magnetic stirrer. Manuone referenced an online magnetic stirrer that only costs ~$35. Apparently, about all that is required is add drug add liposomes and stir (though the amount of drug to add would be quite a small amount; perhaps start off with a dose thousand fold lower than unformulated oral dose.)

Ping Manuone for a consult.

https://www.cancertreatmentsresearch.com/community/metabolic-inhibitors/combo-metformin-and-syrosingopine-looks-awesome/paged/31/

Best Wishes, J


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MichalH
(@michalh)
Joined: 2 years ago
Posts: 15
 

Dear dng050

If you cant get another TKI approved but you know it should be effective for your brother’s current mutation or just want to try it,  you can buy generic version of TKIs from India / Bangladesh (much cheaper). Thats what I did for my mum when she could not get further approvals  for afatinib and  osimertinib. She did well on generic TKIs.  I used bonhoapharmacy.com   and had good experience with them – they are really reliable and  you can be sure they deliver good quality medications.


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dng050
(@dng050)
Joined: 2 years ago
Posts: 46
Topic starter  

Thanks a lot, MichalH. I was not aware these generic TKI's were available. I tried to find TKIs relevant to my brother's mutation (ROS1), but could not find those. That would be entrectinib or lorlatinib. I guess these TKIs are too new to be available as generics. I also tried www.emergencydrug.com, but no luck there either.

Kind regards,
dng050


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MichalH
(@michalh)
Joined: 2 years ago
Posts: 15
 

Hi dng,

It seems these two TKIs are really new, therefore no generics available yet.  I dont have much experience with ROS mutations. My mum has EGFR mutation (I am a founder of EGFR exon 18 facebook group). But what is actually the progression mutation here ? I understand that ROS1 is the original mutation  and now your brother is having progression on ROS1 blocking medication, right ? Is ROS1 still highly present despite progression?  


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dng050
(@dng050)
Joined: 2 years ago
Posts: 46
Topic starter  

MichalH, actually there is no progression. It is just that my brother's liver cannot tolerate crizotinib - his liver ALT has rised to about 500 (normal range 10 - 70) on standard dosage. When going off crizotinib, the cancer has unfortunately grown back to what it basically was at the time of dx. But according to our oncologist, my brother still reaps benefit from crizotinib (intermittent low dose) while we wait for the processing of our application for entrectinib (which is also a first line TKI for ROS1).

Kind regards,
dng050


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MichalH
(@michalh)
Joined: 2 years ago
Posts: 15
 

dng, thank you for your clarification.  Intermittent low dose crizotinib  seems to me a good strategy for now. Maybe you will find a way to rechallenge this drug with a full effect later again . My mum rechallenged afatinib after a break on chemo and no treatment. 

If liver is the problem, why not to try the best formulation of silibinin -  formulations with Eurosil 85. What brand of Legalon is your brother taking?  Is it "Legalon Forte Madaus" or just regular Legalon ? Legalon Forte Madaus has increased superior bioavailability such as in Legasil and Legalon E (these two are with vitamin E). The Spanish research team used silibinin Eurosil 85 formulation in Legasil in their research with brain mets with NSCLC and they established that this formulation has the highest bioavailability/penetration in the brain and I guess it could  be best for liver too.


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dng050
(@dng050)
Joined: 2 years ago
Posts: 46
Topic starter  

MichalH, we were using the "ordinary" Legalon. I was not aware of the difference between Legalon vs. Legalon Forte Madaus. So I went on eBay and bought ordinary Legalon, before I read this page ( https://cancergrace.org/forum/silibinin-effective-brain-metastases-lung-cancer-1294931 ) in detail and discovered that the crucial Eurosil85 formulation is only used in Legalon Forte Madaus. I just realised this last week, so we have now placed an order from a German pharmacy for Legalon Forte Madaus.

Another advantage of Legalon Forte Madaus is, as you mentioned, the CNS penetration. This is the more important since the standard of care in Norway does not schedule regular MRIs of the head unless there are any symptoms. 

I am saving all the tips I get from you and others on this page, so that I can take a fresh look at them at a later time. I have thought about the idea of rechallenging crizotinib.

Kind regards,
dng050


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MichalH
(@michalh)
Joined: 2 years ago
Posts: 15
 

Is entrectinib used more widely in some cancers ? If so (or even if not), you can ask other patients on forums for leftovers of entrectinib. Some people might possibly have them and send to you. I have been able to get  afatinib leftovers  for my mum and was surprised how helpful other patients were.

Thank you and Daniel for mentioning Anne Sofie Boldsen Salicath earlier in the discussion (and for linking her speech on youtube that I did not know of) . She was a most helpful person and is really missed by others on forums.  She    once said on an EGFR registers forum that medications have "no expiration". So you can even use expired TKIs without a problem.  We tested this with my mum. We actually used expired afatinib (1-2 years after expiration date)  in the beginning of my mums rechallenge and it worked very well.


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MichalH
(@michalh)
Joined: 2 years ago
Posts: 15
 

dng050, I started the  silibinin thread on cancergrace and inspire (where I am as daxys). I communicated with dr. Bosch-Barrera and my mum has been taking Legalon Forte Madaus for almost 2 years now. Her brain metastases has been stable (after stereotactic radiation on silibinin). Her liver enzymes have always been in normal range.

Dr. Bosch-Barreras team is doing a lot of research with silibinin and they also found it could help prolong the effect of some TKIs (in vitro mostly).


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dng050
(@dng050)
Joined: 2 years ago
Posts: 46
Topic starter  

I tried to ask for entrectinib in two Facebook groups (one for ROS1 and one for ALK), but was stopped in one group. The moderator said it was not allowed because the group could be shut down by Facebook. I got no success in the other group. It seems to me that entrectinib is so new on the market that not many people have had access to it. Given the sky high price of entrectinib, I am afraid my brother's application will be turned down (but I remain in hope of a positive outcome).

Kind regards,
dng050


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Daniel
(@daniel)
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Hi @michalh,

You are very welcome! Indeed, I also found a study many years ago, performed by the US army, showing that after 10 years drugs are still active at a level of about 80% if kept in normal conditions. I tested this and its true, they are still active years after expiry date.

Kind regards,
Daniel


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dng050
(@dng050)
Joined: 2 years ago
Posts: 46
Topic starter  

UPDATE NOV 2020

Dear all,

An update on my brother's current situation for those who are interested:

About three months have passed since I last posted on this forum. My brother applied for entrectinib, but a change of events made that unnecessary. I stumbled upon an article which found that "Entecavir could increase the exposure and reduce the elimination of crizotinib in lung cancer patients" ( https://pubmed.ncbi.nlm.nih.gov/31740393/). I brought this to the attention of my brother's oncologist and another doctor taking care of my brother's hepatitis B.

The doctors decided to change my brother's HBV medication to tenofovir, although the oncologist said to me that they did not believe this would pose any difference. But lo and behold, my brother's elevated liver enzymes (ALT up to 400 - 500) came down to normal levels again (below 70). So my brother could eventually get back to normal dosage of crizotinib (250 mg x 2/day). His latest CT scans (taken in October) showed positive progression.

The lesson for me following these events is that even the unlikely might happen in the field of medicine, and that few of us have the answers. Sometimes we just have to use the method of trial and error.

The next challenge awaiting my brother now is an appendectomy next week. I have been afraid that this might not be good for him due to his lung cancer and reduced BMI (167 cm height, 58 kg). But he says he feels in good condition and want to follow the advice to get the appendectomy done. I have read some articles, amongst those one which was posted by Daniel on this site, on certain sedatives to be cautious about when undergoing surgery while having cancer. The goal is to avoid high risk of metastatis. I have advised my brother to talk to the surgeon and the anaesthesiologist about what sedatives to avoid. As I understand, he should avoid, amongst others, morphine and ketamine, and also anaesthesia in the form of gas.

If anyone has experience or advice they want to share regarding cancer and surgery (not in relation the tumor), I would be grateful.

Kind regards,
dng050
 


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Daniel
(@daniel)
Admin
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Hi @dng050,

It's great to hear your brother is better. Your experience is a very good example of why we are here: "unlikely might happen in the field of medicine". In order this to happen we need to learn and extend our view regarding treatment options.

Indeed, sometime ago I shared a review consolidated by an anesthesiologist at a cancer center in Amsterdam discussing the various anesthesia options used during surgeries and their impact on subsequent evolution of tumors in cancer patients. 

In general, I would say that whenever possible, if the surgery is not urgent (like removing dangerous tumors, etc.) it's best for cancer patients to postpone the surgery. Not so much because of the drugs used for anesthesia but more because of the inflammation triggered by the intervention.

Kind regards,

Daniel


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johan
(@j)
Joined: 3 years ago
Posts: 638
 
Posted by: @dng050

UPDATE NOV 2020

Dear all,

An update on my brother's current situation for those who are interested:

About three months have passed since I last posted on this forum. My brother applied for entrectinib, but a change of events made that unnecessary. I stumbled upon an article which found that "Entecavir could increase the exposure and reduce the elimination of crizotinib in lung cancer patients" ( https://pubmed.ncbi.nlm.nih.gov/31740393/). I brought this to the attention of my brother's oncologist and another doctor taking care of my brother's hepatitis B.

The doctors decided to change my brother's HBV medication to tenofovir, although the oncologist said to me that they did not believe this would pose any difference. But lo and behold, my brother's elevated liver enzymes (ALT up to 400 - 500) came down to normal levels again (below 70). So my brother could eventually get back to normal dosage of crizotinib (250 mg x 2/day). His latest CT scans (taken in October) showed positive progression.

The lesson for me following these events is that even the unlikely might happen in the field of medicine, and that few of us have the answers. Sometimes we just have to use the method of trial and error.

 

Well done!!


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Manuone
(@manuone)
Joined: 4 years ago
Posts: 149
 

@dng050 I'm very happy for your good news 🙂
In the end we reach a point where we must be the ones to draw our own conclusions


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