2. Did Alectinib work nicely? Since then, what different remedies have you ever obtained?
Alectinib labored splendidly at first. My PET scan three months later, in June 2022, confirmed that each one metastatic lesions had been gone and the first tumor measurement was diminished by half, however in September my first CT scan confirmed development within the major tumor, and the follow-up PET scan confirmed this and in addition confirmed a brand new lesion on the T12 vertebra. Since there have been solely two spots – the first tumor and the T12 lesion, my oncologist urged treating T12 with stereotactic physique radiation remedy (SBRT) and the first web site with radiofrequency ablation (RFA) whereas protecting me on Alectinib.
The SBRT and RFA had been very profitable, however the most cancers didn’t cease there. The following PET scan in December 2022 confirmed development with new lesions in my mediastinal and belly lymph nodes. Moreover, an MRI confirmed a brand new 8 mm lesion within the mind. My oncologist concluded that Alectinib was not working and that I wanted to change to Lorlatinib.
It is price mentioning that through the RFA process additionally they took the chance to take just a few samples of my tumor and ship them for evaluation. The experiences got here again confirming it was nonetheless NSCLC, ALK-positive, TP53-positive, PDL-1 at 65%, and with out a MET amplification.
So, on the twenty first December, 2022, I switched from Alectinib to Lorlatinib, hoping it will work whereas I loved the Christmas holidays with my household. Nevertheless, a PET scan in January 2023 confirmed extra lesions within the physique, and the MRI confirmed that the mind lesion had grown from 8 mm to 12.5 mm. My oncologist concluded that Lorlatinib was not working both and that I wanted to begin chemotherapy, whereas utilizing mind SBRT (CyberKnife) to deal with the mind lesion.
So, I began chemo on the twenty fifth of January, 2023, and had the mind SBRT on 4th of February. The chemo was deliberate for 4 cycles with three weeks in between, with full dose of Cisplatin, Alimta (Permetrexed), and Avastin (Bevacizumab, an angiogenesis inhibitor), to be adopted by upkeep chemo each 3 weeks with Alimta and Avastin, however, for the primary chemo, Avastin was dropped as a consequence of interference with the forthcoming mind SBRT, and, ranging from the 2nd cycle, Cisplatin was dropped and changed by Carboplatin as a consequence of renal injury issues. The upkeep cycles had been primarily with Alimta solely, as I typically had different issues that prevented using Avastin. In whole, I had 8 chemo classes, 4 full doses, 4 upkeep chemo remedies, primarily with solely Alimta, with the final session on the seventh of July. This interview jogs my memory that, out of my 8 chemo classes, I missed Avastin 4 occasions. This could possibly be a key issue for the failure of this primary chemo line.
After the 4 full-dose chemo classes, a PET scan confirmed there have been 5 spots lit up, all lymph nodes, 4 within the mediastinal area and 1 within the belly space. My oncologist consulted the Medical Committee and determined to irradiate these within the mediastinal area with radiotherapy, whereas persevering with the upkeep chemo each three weeks.
15 rounds of radiotherapy had been finished from the thirteenth of June to the third of July, however in the long run, they not solely didn’t kill the most cancers cells, however additionally they precipitated a 3 cm ulcer in my esophagus! It was so painful that I couldn’t even swallow my very own saliva. I made a decision to return to Thailand in mid-July, when my esophagitis was at its worst, as a result of it is laborious to search out good providers in Europe over the summer time. In Thailand, an esophago-gastroscopy was instantly organized, biopsy was taken from the ulcer, and CMV (cytomegalovirus) was discovered, and I used to be hospitalized for per week to obtain antiviral medication.
The massive disappointment was that, once I got here again to France on the finish of August 2023 for my common check-up and oncologist session, the PET scan confirmed most cancers development with many extra lymph nodes affected. Fortunately, the MRI confirmed nothing to fret about within the mind. My oncologist concluded that this primary line of chemo was not working, and that, given my excessive PDL-1 expression, it will be price it to attempt the mixture of 2nd line chemo plus immunotherapy.
So, on the twenty first of September, 2023, I obtained the primary infusion of Carboplatin, Taxol (Paclitaxel, which works in a different way from Permetrexed), and Keytruda (Pembrolizumab, an anti-PD-1 inhibitor). This time, 4 cycles of those full-dose medication had been deliberate, and, if profitable, they might be adopted by immunotherapy (Keytruda) alone, each 6 weeks. A mid-term test in November confirmed very encouraging outcomes with many vibrant spots proven on the dear PET scan disappearing, however just a few new spots exhibiting up.
The ultimate verdict got here once I had accomplished all 4 cycles plus one Keytruda alone infusion: my PET scan on the twenty third January 2024 confirmed vital development within the lymph nodes with new lesions within the neck space and within the decrease proper lobe. The hope for immunotherapy to work was damaged, and my oncologist urged that I rechallenge with Lorlatinib whereas going by way of the pre-selection course of for just a few scientific trials. So, I’m once more on Lorlatinib now, and I hope it really works this time.
So, you see, over the previous two years, I’ve tried a lot of the superior most cancers remedy choices: TKIs, chemotherapy, RFA surgical procedure, SBRT, CyberKnife, radiotherapy, immunotherapy, and I’ve realized so much.
I’m completely happy to say that, regardless of the heavy remedy and the unwanted effects, I’m nonetheless in good condition, each bodily and mentally.
3. Clearly, you went by way of so much over the previous two years. You talked about the esophageal ulcer attributable to the radiotherapy that made you undergo so much. Have you ever skilled different main unwanted effects with all these remedies?
Sure, I additionally had extreme sore pores and skin within the belly and chest space shortly after the RFA process in November 2022. This was as a result of the process requires a big needle to penetrate my again to achieve the tumor within the lung, so this punch broken nerves on the best way. The ache lasted for a month earlier than it step by step went away.
I went to the emergency room twice final 12 months as a consequence of an infection by Gram-negative micro organism by way of my chemo port, which they eliminated and reinstalled three weeks later.
I tolerated the 2nd line of chemo plus immunotherapy remedy comparatively nicely. The foremost unwanted effects had been attributable to Taxol. My hair began to fall out considerably two weeks after my Taxol infusion, so I needed to shave my head. However my hair began to develop again a month after the final Taxol infusion. I virtually have all my hair again now, and the hair is way softer than earlier than. One other facet impact from Taxol is numbness in my toes. It began 1.5 month after the final Taxol infusion. It’s only within the toes, not fingers. It was very extreme, and I nonetheless haven’t recovered from it.
After I was on Alectinib or Lorlatinib, I additionally had unwanted effects like pores and skin rash, fatigue, constipation, neuropathy, and so forth., however in comparison with these of TKI, unwanted effects from RFA, chemotherapy, and radiotherapy could possibly be extra severe. One lesson I realized from all these is that we the sufferers must actively handle the unwanted effects ourselves. Many docs give attention to killing the most cancers cells however ignore the unwanted effects that might additionally take our life.
4. You may have had fairly a novel remedy journey. What have you ever discovered most difficult thus far? And, conversely, have you ever discovered any surprising “blessings” in being thrown on this most cancers journey?
Probably the most difficult factor thus far has been discovering out what drives my most cancers development. We have now been working after the most cancers one remedy after one other with none respite. It’s disappointing to see that, after so many various remedies, my medical workforce has not but discovered a approach to put ‘the beast’ beneath management. I’ve had 3 tissue biopsies and a pair of liquid biopsies thus far, all confirmed it’s NSCLC, ALK-positive, however none has detected every other vital targetable mutation, and it’s not delicate to any ALK TKIs. Regardless of having a excessive PD-L1 (95% within the January 2024 biopsy), immunotherapy doesn’t work both. So, there should be one thing else that’s driving the most cancers development, and we have now not been capable of finding this ‘one thing else’.
By way of ‘blessings’ I discovered in my most cancers journey, I acquired many:
1. Initially, I’m so fortunate to be within the French social safety system, through which the state takes care of my remedy prices, and I’ve entry to the very best treatment with out having to fret about the associated fee and associated paperwork. It is a nice assist for us most cancers sufferers in France.
2. Secondly, I really feel very blessed that I’ve a house that’s so near the very best European most cancers hospital the place I’m adopted by a prime ALK specialist and the very best medical services obtainable.
3. I’m additionally blessed that I can have entry to medical care exterior of France, for instance, in China, Thailand or within the UK, as a result of I’ve world insurance coverage that covers these nations. That is helpful as I journey so much and I nonetheless hope to journey when my scenario will get steady. My Chinese language origine additionally helps me entry conventional Chinese language drugs for remedy of day by day well being points.
4. I’m uniquely blessed with a daughter in medical college who is in a position and so available to help me in my struggle in opposition to the illness. I’m very completely happy to see her dedication to most cancers analysis, as she has been admitted to a PhD program at Cambridge College this autumn.
5. I’m so blessed with a companion who’s the very best prepare dinner, so succesful in dietary issues, taking good care of me the entire time and serving to me in managing the unwanted effects so successfully.
6. Final however not least, I used to be knowledgeable by my daughter of the existence of ALK Constructive FB Help Group, and I joined this group in addition to the French FB group and located these sufferers’ assist teams extraordinarily useful.
5. I perceive you retain nicely on prime of all the most recent developments in ALK most cancers analysis. What do you think about most promising for the way forward for ALK, and what do you hope to see for your self and different ALK most cancers sufferers within the close to and within the longer-term future?
I’ve been studying papers like many people do. By way of newest developments in ALK analysis, I feel the joint paper revealed in early 2023 by the world’s prime 3 feminine ALK specialists, Jaime Schneider, Jessica Lin, and Alice Shaw, titled “ALK-positive lung most cancers: a shifting goal”, summarises them nicely. By way of new drug developments, we have now plenty of scientific trials, essentially the most distinguished of which is NVL-655, and I’m very completely happy to see it shifting into part II now. As well as, Alice Shaw’s speak on the 2023 ALK Summit talked about three most promising areas: Anti-body Drug Conjugates (ADC), Radioligand remedy (RLT), and Immune Cell Engager (ICE). Plus, I consider the ALK vaccine can also be a really promising space.
Whereas we’re all desirous to see sooner progress in most cancers analysis and drug growth, we have now to face the truth that analysis resulting in a brand new drug takes a very long time and requires loads of assets. As a affected person with a life-threatening illness, I’m extra all in favour of short-term yields and quick measures that could possibly be deployed to beat ‘the beast’, to lengthen my progression-free survival, as an alternative of ready for five or 10 years for the brand new medication to be obtainable.
So, what do I hope to see for myself and different ALK most cancers sufferers within the close to and within the longer-term future? Properly, right here is my want record:
1. I hope to see extra scientific trials resulting in extra new accepted medication for us.
2. I hope to see the availability of adjuvant medication/options that we are able to take along with an present TKI to beat its resistance and enhance its efficacy.
3. I hope to see extra scientific trials in drug mixtures, for instance, a TKI with a chemo drug, to see if a number of medication mixed may be simpler by way of their synergistic results than when deployed alone.
4. I hope to see and follow methods by way of which we are able to co-exist with most cancers long-term. This may require a distinct method to the most cancers remedy than the full elimination of most cancers cells. If I can co-exist peacefully with the most cancers, why we could kill it in any respect prices?
5. I additionally hope to see a extra personalised holistic method to treating our illness with a package deal of medication and measures tailor-made to my private situations. This package deal would come with the continuing most cancers remedy, be it TKI, chemo, surgical procedure, or radiation, but in addition directions about what I ought to eat and drink each day to strengthen remedy efficacy. It could additionally embody the dietary supplements (resembling nutritional vitamins, curcumin, ginseng, inexperienced tea extract, and so forth.) I ought to take, the bodily workouts I ought to do each day, and so forth.
6. I additionally hope to see extra energetic affected person participation. I consider that we sufferers shouldn’t passively go away our well being solely to the medical workforce. The medical workforce’s process is to kill the most cancers cells, however our mission is broader: therapeutic and survival. We have to totally cooperate with the medical workforce to make our physique and spirit sturdy sufficient to assist the medical remedies, to heal from its unwanted effects, and to attain long-term survival with top quality of life. There are various issues we are able to do on this respect.
7. Affected person participation begins with affected person consciousness. I hope to see each newly recognized most cancers affected person given a affected person most cancers guidebook. It could discuss what this most cancers is, what are its attainable causes, what are the obtainable drug/remedy choices and their attainable unwanted effects, what are the obtainable social assets, together with affected person assist FB teams that may assist, and so forth. It’s crucial for a newly recognized affected person to not be left alone and feeling helpless and determined.
It is a lengthy record. I consider these are good subjects for reflection about our future.