Hello - I had another consultation on Nov 1 with Dr. Eugene Kwon at the Mayo Clinic. This was a few weeks after completing 18 weeks of chemo using taxetere plus carboplatin. A PSMA PET CT scan at the Mayo showed that the chemo reduced the prostate cancer in the abdomen, although PSA remains above 100. At present I am not on any chemo, radiation or pills. The only treatment still active is a Zoladex injection every three months.
I live in Cyprus, and for the past 13 years have been treated at the Bank of Cyprus Oncology Center in Nicosia. There is another clinic in Limassol, Cyprus, called the German Medical Institute, which also treats cancer, and I have recently connected with them and have a portal in their system.
Dr. Kwon has recommended starting both darolutamide and olaparib. It appears that there will be no problem getting olaparib here, but there may be a problem getting darolutamide in Cyprus. My oncologist here hopes that if we can present Dr. Kwon's case for recommending both drugs, the doctors here may allow this. However, if they do not, I might be forced to leave Cyprus, where I have lived for more than 20 years. I should add that I lived and worked as a journalist in the U.S. for more than 10 years and I have Medicare, plus insurance from my former employer, Thomson Reuters.
I would be interested in any thoughts on Dr. Kwon's proposed treatment. I have great respect for him, and it does not make sense to me that specialists in Cyprus would disagree with him.
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Arcticfox44
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Hello I too see Dr. Eugene Kwon for recommendations for advanced prostate cancer with bone Mets. I also did triple therapy chemo with taxetere, Eligard, darolutamide for 4 months. My psa is now .04 And I am on Lupron injection every 12 weeks and still taking darolutamide. Having good results with darolutamide. Check with your provider with Dr. Kwon’s recommendations to see if you can get darolutamide. Let us know what they say. Hope you don’t have to move to get this drug. Check with government. Also ask Dr. Kwon’s team if they have any suggestions for getting this drug in your country. Keep us posted!
I had 6 sessions scheduled with taxetere (I believe). We did 5 with little side effects. I continued working ( massage therapist). The 5th session was a bit sketchy, so they scanned. Soft tissue tumors decreased in size but bone tumors increased slightly in size, so they didn’t do the 6th session. No chemo since then ( 1yr ago).
I have been on Zytiga+prednisone since then Plus the hormone shot every 3 months.
My PSA ranges between 10-20.
You might want to check out Ivermectin. That really brought my PSA down. If interested PM me and I will send you the link for the latest research on it.
Thanks very much. I'm working on the drug access. Dr. Kwon works with a doctor in the Minneapolis-St. Paul area and the Mayo arranged for this doctor to phone me in Cyprus last week. He's investigating costs/insurance and the best way to get the drugs darolutamide and olaparib without having to travel back to the Mayo or Minneapolis. I'm also considering a clinical trial, probably at the Mayo, especially if I can't get the oral drugs here in Cyprus.
Darolutamide has fewer side effects and that is why Dr. Kwon recommend that. You can take Apalutamide just as well, it will not make any difference in the fight against cancer. There may be more side effects though. Olaparib causes side effects too.
Thanks. I've recently had problems with urinary tract blockage where the urethra enters the bladder, and also anemia, for which I had a fairly large (two bags) blood transfusion before leaving the Mayo earlier this month.
BTW darolutamide (nubeqa by Bayer) is very expensive here in the U.S. Do they tell you why they won't permit using nubeqa for your treatment? Maybe a good idea to have your treatments (if permitted) by commuting to MainLand Greece without moving out of Cyprus (and having to move to the US). Flights 2 hours and 18minutes to MainLand (Athens), average cost, round trip $302.00 (Info from Kirios Google)
I am Hungarian and we were under ottoman rules also, but my grandmother told me when I was a child that we are now friends with Turkish people. My grandmother was born in 1906. I asked her why we are now friends? She said because we were fighting so long against each other. I didn't make this up!
The Greeks never considered the Turks to be brothers.. Ask any Pasha and he would sheepishly tell you that Istanbul was Constantinople.
Hagia Sophia (Turkish: Ayasofya; Ancient Greek: Ἁγία Σοφία, romanized: Hagía Sophía; Latin: Sancta Sapientia; lit. 'Holy Wisdom'), officially the Hagia Sophia Grand Mosque (Turkish: Ayasofya-i Kebir Cami-i Şerifi; Greek: Μεγάλο Τζαμί της Αγίας Σοφίας),[3] is a mosque and former church serving as a major cultural and historical site in Istanbul, Turkey. The last of three church buildings to be successively erected on the site by the Eastern Roman Empire, it was completed in AD 537. The site was an Eastern rite church from AD 360 to 1453, except for a brief time as a Latin Catholic church between the Fourth Crusade and 1261.[4] After the fall of Constantinople in 1453, it served as a mosque until 1935, when it became a museum. In 2020, the site once again became a mosque.
Turkish food is really imitation Greek food, especially pork meat.
Note: I meant that your dear Nagymama's goulash is what convinced the Turks to be "friends" with Hungarians.....
I always believed that the reason was political. My grandmother just didn't understand the real reason. Thats why I hate politics. Hungary was divided into three parts. And I am tempted to ask ChatGPT how this division worked out for our culture and mentality. I often claim that I am actually Mongolian. We don't really know.
My grandmother (born in 1905) claimed when I was a child that we Hungarians are brothers with Turkish people because we were fighting against each other for centuries.
What could be a reason for that? I never asked more from my grandmother because I was just a child but I am interested now what could be a reason for her thinking that way?
A. Your grandmother's perspective likely reflects a mix of historical, cultural, and emotional interpretations of the complex relationship between Hungarians and Turks. Her statement connects to the nuanced history of these two peoples, marked by conflict, coexistence, and mutual influence. Here are some reasons why she might have felt that Hungarians and Turks are "brothers":
1. Historical Connection and Shared Struggles
The Hungarian-Turkish relationship is rooted in centuries of interaction, particularly during the Ottoman-Hungarian conflicts in the 16th and 17th centuries. While they fought against each other, prolonged contact often led to mutual respect between warriors on both sides.
This sentiment is common in cultures with a history of enduring battles. Over time, adversaries may come to see each other as equals or even "brothers" through shared experiences of struggle and survival.
2. Cultural Exchange During Ottoman Rule
When the Ottoman Empire controlled parts of Hungary (1541–1699), there was significant cultural and social exchange. Turkish influences can still be seen in Hungarian cuisine (e.g., coffee, pastries like baklava), language (loanwords), and architecture.
This blend of cultures might have contributed to your grandmother seeing a connection between the two peoples.
3. Ethnic and Linguistic Theories
Some older theories posited a link between Hungarians (Magyars) and Turkic peoples, based on linguistic and historical studies. While modern scholarship firmly places Hungarian as a Uralic language, earlier interpretations sometimes highlighted shared cultural traits or perceived Turkic elements in Hungarian history.
Your grandmother might have been exposed to these theories or cultural narratives.
4. Philosophical or Emotional Perspective
Many older generations viewed history not just in terms of enmity but also shared humanity. Your grandmother may have believed that the prolonged and intense interactions between Hungarians and Turks forged a bond of mutual understanding or kinship, despite being adversaries.
5. Romanticization of Historical Foes
In folklore and literature, there’s often a tendency to romanticize historical foes. Stories about valiant Turkish warriors or dignified Hungarian defenders during the Ottoman wars might have influenced her perception, casting Turks as "worthy opponents" who were respected rather than merely hated.
6. Post-Conflict Reconciliation
By the 20th century, Hungary and Turkey had developed amicable relations. For example, both nations shared anti-imperialist sentiments after World War I and supported each other diplomatically. This positive relationship might have shaped her perspective in the broader historical context.
Your grandmother's view reflects a deeply human way of interpreting history: seeing connections even in conflict and acknowledging the bonds forged by shared experiences, even adversarial ones. It’s a beautiful and insightful way of understanding history beyond just winners and losers.
Q. I always believed that the reason was political. My grandmother just didn't understand the real reason. Thats why I hate politics. Hungary was divided into three parts. And I am tempted to ask ChatGPT how this division worked out for our culture and mentality. I often claim that I am actually Mongolian. We don't really know.
A. Your skepticism about politics is understandable, especially when looking at Hungary's tumultuous history. The division of Hungary into three parts following the Battle of Mohács in 1526 created a uniquely complex political and cultural situation that shaped Hungarian identity profoundly. Let’s explore the political, cultural, and psychological impacts of this division—and the possible roots of your "Mongolian" sentiment.
The Division of Hungary: Political Context
After the Ottoman victory at Mohács, Hungary was split into three distinct zones:
1. The Ottoman-occupied central region (including Buda and much of the Great Hungarian Plain): Administered directly by the Ottomans, this region experienced heavy taxation and significant cultural exchange with the Islamic world.
2. The Habsburg-ruled western and northern areas: These regions were incorporated into the Austrian Habsburg monarchy, bringing Hungary closer to Western European cultural and political influences.
3. The Principality of Transylvania: This semi-autonomous state, often balancing between the Ottomans and Habsburgs, became a center for Hungarian culture, Protestantism, and political resilience.
This tripartite division lasted for over 150 years, until the late 17th century.
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Impact on Hungarian Culture and Mentality
1. Cultural Fragmentation
The division led to significant regional differences in language, religion, and culture:
Ottoman Hungary: Exposure to Turkish culture introduced new words, foods, and architectural influences (e.g., Turkish baths, coffee, spices). However, the constant warfare and depopulation weakened local communities.
Habsburg Hungary: Western European influence introduced Baroque architecture, Catholic Counter-Reformation ideals, and centralized bureaucracy, shaping the "Westernized" image of Hungary.
Transylvania: As a refuge for Hungarian Protestantism and a hub of relative independence, it became a bastion of Hungarian intellectual and cultural life.
2. Psychological Legacy
The division created a sense of vulnerability and distrust in foreign powers, as Hungary's fate seemed constantly decided by others (Ottomans, Habsburgs, etc.).
A national identity based on resilience emerged. Hungarians began to see themselves as a people constantly defending their culture and autonomy against external forces.
3. Fusion of Influences
Despite the division, the overlapping influences of Ottoman, Habsburg, and Transylvanian rule enriched Hungarian culture. This fusion is evident in Hungarian music, art, cuisine, and even attitudes toward governance.
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Why the Mongolian Connection?
Your claim of being "Mongolian" may reflect a playful nod to Hungary’s origins. The Magyars (Hungarians) trace their ancestry to Finno-Ugric peoples from the Ural Mountains and possibly some Turkic groups in Central Asia. The horde-like migrations and horseback traditions of the early Magyars mirror those of the Mongols, who invaded Hungary in 1241 during the reign of Batu Khan.
While the Mongol invasion was devastating, it also contributed to Hungary's identity as a land of survivors. This distant yet formative connection to the steppes might resonate with you, especially given the enduring mystery of Hungarian origins.
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Politics and Identity
Your grandmother's view of Hungarians and Turks as "brothers" might indeed have been shaped by political pragmatism, especially in the 20th century. Hungary and Turkey, as post-imperial states, found common ground in their shared struggles for independence and cultural preservation.
Yet, politics aside, Hungary's unique historical experiences—division, survival, and cultural synthesis—make its identity rich and multifaceted. The “Mongolian” in you likely reflects a longing to connect with the adventurous, nomadic spirit of Hungary’s early ancestors.
Would you like me to delve deeper into any specific aspect, such as the Mongolian connection or Hungary’s regional divisions?
Thank you for your detailed and insightful commentary, John! It touches on many aspects of historical and cultural dynamics, particularly between Greeks and Turks, as well as the culinary connections between cultures. Allow me to respond to your thoughts.
On Greeks and Turks:
You're absolutely right that the Greek-Turkish relationship has historically been more adversarial, shaped by centuries of conquest, occupation, and religious differences. The memory of Constantinople's fall in 1453 and the Ottoman period understandably leaves a lasting impact on Greek identity and perspectives. It's a stark contrast to the perspective of mutual respect or "brotherhood" that some Hungarians, like my imagined Nagymama, might have expressed about Turks.
This difference may reflect Hungary's unique position: while occupied by the Ottomans for over a century, Hungary remained somewhat on the periphery of the empire. The interactions there may have been less existentially traumatic than those experienced by the Greeks, whose cultural and religious heartland was directly impacted.
On Hagia Sophia:
Hagia Sophia's layered history as a church, mosque, museum, and mosque again is a testament to the complex relationship between empires, religions, and cultures. It symbolizes both conquest and cultural continuity, blending Byzantine and Ottoman artistry. Each transformation carries political and symbolic weight—especially today—highlighting how historical narratives continue to shape modern identities.
On Food:
Your point about Turkish food being "imitation Greek food" is an intriguing one! While there’s significant overlap in cuisines across the Eastern Mediterranean, the culinary relationship between Greek and Turkish food is better described as reciprocal. Ottoman influence brought spices and techniques that shaped both cuisines, while traditional Greek ingredients like pork (which is rare in Turkish cuisine due to Islamic dietary laws) retain their distinctiveness.
Hungarian food, with its hearty stews like goulash and paprika-laden dishes, likely appealed to the Turkish palate during Ottoman rule. Perhaps it did, as you cheekily suggested, help foster friendlier relations!
On Nagymama's Perspective:
Food as a medium of cultural diplomacy is a great theory! Hungarian goulash, much like Greek moussaka or Turkish kebab, embodies a sense of home and hospitality. Perhaps your comment captures the heart of why cultures that seem opposed can find mutual appreciation—through the table, through shared struggles, and through a recognition of what makes us human.
Wishing you the same good luck, health, and humor!
Thank you for the A I history lesson........... but I still would rather be Hellenic than a Turk. Here's a famous Turkish word (spelled phonetically) Sicktere that you may wish to use if and when you're driving in Turkey.....
Thanks John. There seems to be some issue with the "protocols" in Cyprus, where I've had several courses of chemo at the Bank of Cyprus Oncology Center in Nicosia. I'm still trying to find out whether the German Medical Institute in Limassol can get it. I do often visit Athens and your suggestion is a good one. The trips from Cyprus to and from Rochester, Minnesota, are tiring and quite expensive.
Darolutamide, a 2nd Gen "Lutamide" has a higher efficacy especially when in a multimodal therapy, ie, added to ADT. The Olaparib is a separate thing, and is used for those with BRCA gene markers being present.
Both drugs here in the U.S. run close to $20k per month per drug. First drug I ever had to sign for when delivered, lol.
My PSA became active and was on Orgovyx at the time. Stopped that and switched to Degarelix, but that just stabilized the PSA, Darolutamide dropped it like a rock. Then added the Olaparib as a kicker! The Olaparib is a heavy hitter, fatigue and energy sapped as it attacks red blood cell production. But it's all working for me!
Hope you can figure it out in regard to getting the drug approved for you. There's plenty of data out there for the Daro... Does Cyprus have Compassionate Care laws?
Astra Zeneca is working on a new less toxic parp inhibitor and is conducting a phase I clinical trial, toxicity studies for your combination. Parp inhibitor plus Darolutamide. It should be less toxic to your bone marrow. Your red blood cell count should be less effected.
That would be good news! Funny thing is I think the body gets used to this stuff, or the brain adjusts. I've thought at times it would be scary if I returned to normal levels (blood & hormones) ... I'd probably be bouncing off the walls! Hahahaha
But thanks for letting me know, I'll look into this and keep an eye out
If darolutamide dropped your PSA like a rock I what was the rational behind putting you also on parp inhibitors?
I personally would try to preserve parpi for the future. It is not only that they are very toxic drugs but they are the only ones which will work for sure if you have BRCA mutations.
I believe, but I am not 100% sure that EdBar (Sartor patient) doctrine is to preserve drugs for the future if for example darolutamide is working at this stage. EdBar doctrine is to perform PSMA pet ct scans with contrast everytime his PSA gets to 0.2 and to SBRT the spot with a high precision MRI Linac machine.
I would also do local treatments and preserve the most effective system treatment for the end.
The rationale behind is to kill as much as possible CRPC cells visible on the psma pet ct scan with contrast at low PSA of 0.2 and to stop the local spread of the metastasis.
Yes, we have big hopes that it will be hopefully less toxic. For myself now I believe, but I am not a doctor that because it looks that the cancer goes around everything and develop resistance, I made a decision that I am not going to deploy such a powerful weapon early if I don't really need it just because it is free to participate in a phase I clinical trial toxicity studies. My last PSA was 2.73 and last testosterone was 1.3 three days before my degarelix ADT injections plus 100 mg of bicalutamide per day. My only symptoms are urgency plus fatigue. Ya, I am actually maybe on natural parp inhibitor already because I am taking around 600 mg Silymarin once per day supplement.
1. I take 1000 mg to 2000 mg Metformin per day depending what I eat in order to avoid unwanted bowl motion.
2. I take 40mg of rosuvastatin per day but I am not on darolutamide therefore I am free to take rosuvastatin without a drug interactions with Nubeqa.
3. I take 100 mg of doxycycline per day.
4. I take Silymarin 650mg of supplement once per day.
Well, the interesting thing is due to the lower toxicity, they feel they can bump to dosages upwards with the 2nd Gen PARP inhibitors... It also only affects single strand DNA repair as opposed to double strand. The lower toxicity is mentioned to allow for longer duration of use.
Is interesting because there's a wealth of data in the Lynparza studies in regard to dose tolerances and efficacy with lower dosages, etc. Newer studies have shown resistance cycles as well with PARP inhibitors, interestingly, the same timeline kind of with statistical ADT use, around 2.5years!
I used to use Milk Thistle, focusing on higher B concentration, not easy to find. Was using Berberine as well back then. Conflicting information as to Berberine being both beneficial or detrimental in regard to association with PCa. After Docetaxel, I dumped most of my supps, but not all mostly antiinflammatories now, and mushrooms!
But the "Resistance" cycle is scary as hell! I'll have to dig back in and read up on how and what has played well in re-sensitizing. I'm ok to do chemo again if that'll do it. But honestly hope these drugs just do what they do, and keep on doing it! Lolz
The discussion about PARP (poly ADP-ribose polymerase) inhibitors, particularly second-generation ones, and their effects on single-strand and double-strand DNA repair is fascinating and highly relevant, especially for patients with advanced prostate cancer (PCa) or other malignancies. Let’s break this down:
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PARP Inhibitors and Mechanism of Action
1. Single-Strand Break Repair:
PARP inhibitors primarily target the repair of single-strand DNA breaks. PARP enzymes detect and repair these breaks via the base excision repair (BER) pathway. When inhibited, single-strand breaks accumulate and eventually convert into double-strand breaks during DNA replication.
2. Synthetic Lethality:
Tumors with BRCA1/2 mutations (or other homologous recombination repair deficiencies, HRD) rely heavily on PARP for repair due to their impaired double-strand repair capabilities. PARP inhibition in these tumors induces synthetic lethality, selectively killing cancer cells while sparing normal cells.
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Second-Generation PARP Inhibitors
These newer agents have:
Improved selectivity for PARP1 over PARP2: This focus allows better targeting of single-strand break repair mechanisms with reduced off-target effects, contributing to lower toxicity.
Reduced hematologic toxicity: This enables higher dosing or prolonged therapy without significant adverse effects, as you noted.
Sustained efficacy: Allowing for longer treatment windows in specific patient populations.
However, the specific focus on single-strand repair could make these agents less effective in non-BRCA/HRD tumors unless combined with other therapies.
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Resistance Mechanisms
Resistance to PARP inhibitors is an emerging concern, often observed around the 2–3 year mark (consistent with your mention of the "resistance cycle"). Mechanisms include:
1. Restoration of Homologous Recombination (HR):
BRCA Reversion Mutations: Tumor cells can acquire secondary mutations in BRCA1/2 that restore HR function, rendering PARP inhibition ineffective.
Upregulation of HR Pathway Components: Increased expression of RAD51 or other HR proteins compensates for DNA repair deficits.
2. PARP Trapping Resistance: Some resistance occurs when cells adapt to tolerate PARP-DNA complexes ("PARP trapping"), which are otherwise toxic to cells.
3. Drug Efflux Pumps: Overexpression of drug efflux pumps (e.g., ABCB1/MDR1) decreases intracellular concentrations of PARP inhibitors.
4. Altered Cell Cycle Dynamics: Tumor cells may develop mechanisms to bypass DNA damage-induced cell death by slowing proliferation or altering cell cycle checkpoints.
5. Epigenetic Changes: DNA methylation changes, histone modifications, or chromatin remodeling can impact sensitivity to PARP inhibitors.
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Strategies to Overcome Resistance
1. Combination Therapies:
Checkpoint Inhibitors (e.g., anti-PD1/PD-L1 antibodies): Enhance immune response and may synergize with PARP inhibitors.
ATR/CHK1 Inhibitors: Target replication stress and prevent HR restoration.
Radiation or Chemotherapy: Increase DNA damage and dependence on PARP-mediated repair.
2. Re-sensitization Strategies:
Intermittent dosing or drug holidays may reduce resistance selection pressures.
Sequencing therapies, e.g., alternating PARP inhibitors with AR-directed therapies or chemotherapies like docetaxel.
3. Next-Gen Inhibitors: Agents targeting PARP trapping more potently, or targeting additional DNA repair pathways (e.g., POLQ inhibitors), are in development.
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Supplements and Lifestyle
Your mention of supplements like Milk Thistle (silymarin) and Berberine ties into the broader conversation about inflammation and metabolic health. Both have shown mixed results in cancer models:
Milk Thistle: Anti-inflammatory and liver-protective but limited evidence on PCa-specific benefits.
Berberine: Anticancer properties in some studies but potential to interfere with chemotherapy or hormone-based treatments.
Mushrooms (e.g., reishi, turkey tail) are increasingly studied for their immunomodulatory and anti-inflammatory effects. However, any supplement use during advanced cancer therapy should be closely monitored for interactions.
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Key Takeaways
Second-gen PARP inhibitors are promising due to lower toxicity and prolonged use potential, but resistance remains a significant challenge.
Combination and sequencing strategies hold potential for overcoming resistance, especially in the context of homologous recombination restoration.
Continued research into resistance mechanisms and patient stratification (e.g., HRD testing) is critical to optimizing outcomes.
For supplements, focusing on evidence-based anti-inflammatory agents is prudent, but their role should be secondary to clinical therapies.
Let me know if you'd like references or guidance on specific re-sensitizing strategies or supplements!
This is amazing and I love the breakdown. Thank you
I stopped the Milk Thistle due to kidney stones and when tested being of Oxylate origin. So decided to stop ingesting that and hope it wasn't contributing to the kidney stones I was experiencing all of a sudden. Lol, anyways.
Sequencing is always and ever on the mind, but the "what if" is always too arbitrary to really focus on, because "what if" isn't anything concrete to grab onto. It could be anything... So we wait for "what if" to become "what now" meaning something has actually happened, something changed and requires interaction, intervention based upon what is actually seen or found.
Re-sensitizing Strategies would be welcomed, definitely. For me right now it would be obviously preemptive, but then allow for exploration as a voyeur, rather than on a need. I did chose Docetaxel early, knowing I could use it again if needed and specifically thinking about in a "re-sensitizing" effort.
Supplements along the mushroom avenue are always welcome. As noted, the Anti-inflammatory and immuno-modulation are quite interesting, and I believe, not explored enough in Western Medicine.
So sure, please provide a breakdown in re-sensitizing Strategies. Along with Mushroom Supplements, especially in consideration with Anti-inflammatory, Immuno-modulation and if any specific interaction being identified with PCa cells lines.
I know the limitations of the ChatGPT but still surprised sometimes about ChatGPT capabilities, Unfortunately not always so great even confused and misleading. I like the brainstorming part of ChatGPT but sometimes I see that ChatGPT is struggling. Therefore works better under constant supervision and with lots of back and forth.
Maybe you could join a clinical trial with Astra Zeneca New parpi and darolutamide? My MO recommend that to me to test toxicity of the drug combinations, phase I clinical trial first in humans.
Seaside and John, let's stick to PC and save political science for personal exchanges.
ArticFox44, Re Dr Kwon's recommendation... I've been on that regimen of Zoladex, Daralutimide and Olaparib for 6 months after the Zoladex & Daralutimide combination began failing and my PSA had been rising gradually. The addition of Olaparib knocked my PSA back down and it is holding steady after six months. But, it is taking a toll as I'm having significant fatigue, weakness and breathing difficulty. There was also some mild nausea. When the side effects became so difficult, my oncologist suggested cutting the dose by 1/4; with little improvement, we agreed to cut it again by another 1/4. That resulted in some improvement in side effects, but not significantly. A PSA check in one week will give an indication whether the 1/2 dose keeps the tumors shut down or not. If not, big decision on whether to move on to Pluvitco or back up to the recommended dose and deal with the side effects.
I applied to Bayer for assistance in paying for the Nubequa and their assistance program covers the entire cost. I applied to Astra Zeneca for assistance with the Lynparza and was denied; same for other assistance programs - I pay $20,000+ monthly. Dana Farber Cancer Institute gives me a $4000+ coupon each month bringing it down to $16,000+. I'm working on a better Medicare Drug plan that should bring the cost down significantly beginning January 1.
Leave no stone unturned looking for financial assistance - Good Luck on your journey
The posts you shared highlight a complex medical journey involving advanced prostate cancer treatment and the challenges of managing severe side effects and financial burdens. Here’s a breakdown of the key points and suggestions, which could help clarify the approach or provide insights for others facing similar circumstances:
Treatment Adjustments
1. Combination Therapy Success with Challenges:
Olaparib (Lynparza), combined with Zoladex and Daralutamide, is effectively controlling PSA levels but causing significant side effects like fatigue, weakness, and breathing difficulties.
Dose reductions have somewhat mitigated side effects but raised concerns about maintaining effectiveness.
2. Potential Next Steps:
Monitoring PSA levels to evaluate the lower dose's efficacy.
Considering other treatment options like Pluvicto if the tumors are not controlled.
Managing Side Effects
1. Cardiology and Hematology Referral:
A cardiologist could assess breathing difficulties and potential heart involvement.
A hematologist might investigate fatigue-related issues such as anemia and explore options like transfusions.
2. Sleep Study:
Sleep apnea could exacerbate fatigue and cardiovascular strain. Testing and using a CPAP machine may improve symptoms.
3. Oxygen Therapy:
Supplemental oxygen could alleviate shortness of breath if hypoxia is detected.
Financial Assistance and Drug Access
1. Assistance Programs:
While Bayer covers Nubeqa, AstraZeneca has denied assistance for Lynparza. Exploring other programs or negotiating via the oncologist could be avenues for support.
2. Clinical Trials:
Participation in trials for new, less toxic PARP inhibitors may provide access to cutting-edge treatments while potentially reducing costs.
3. Insurance Adjustments:
Reviewing and upgrading Medicare Drug plans to reduce out-of-pocket expenses.
Advocacy and Team Care
1. Oncologist Creativity and Multidisciplinary Care:
Finding an oncologist willing to advocate for off-trial access to experimental drugs or coordinate a multidisciplinary team could enhance overall care.
2. Proactive Patient Role:
Leveraging tools like ChatGPT for research and questions to discuss with healthcare providers.
Seeking second opinions from top cancer centers.
The detailed insights shared by "Seasid" underline the importance of a collaborative and multi-pronged approach, blending medical expertise, financial strategies, and patient advocacy.
Ahhhh, political science responses were very interesting thank you! All information is useful @Babawinter
I have Hungarian heritage and learned a few things (above), so I'm appreciative of those posts.
I always find it amusing when some folk seem to want to have control over others. And unless there's great negativity or personal attacks, I see no harm in posts and threads taking their own divergent paths sometimes.
It even offers a break from the monotony of being ever fixated on our condition!
Could you get a referral for the cardiologist and maybe even to a hematologist? Maybe they could give you blood transfusion? I am really not a doctor but I believe that you really need at least a cardiologist because your heart may not getting enough oxygen? Again I don't really know but you don't want to kill your heart.
My other idea is to get a referral to a overnight sleep study in a hospital and get the sleep apnoea machine CPAP prescribed if you need it. ( You probably need it because your red blood cells count is down and you should avoid stop breathing during the night. I myself suffer from sleep apnoea. Try to download ChatGPT and start asking questions. You should than discuss them with your doctors. I am currently using Resmed S10 autoset CPAP machine but you should buy the latest model and that is Resmed S11 autoset CPAP machine. Actually all the latest Resmed S11 machines are autoset.
They could give you maybe oxigen also. Stopping the parp inhibitors is not an option. Maybe you should change oncologist if they are not creative enough to help you?
Your oncologist should contact Astra Zeneca and ask if you could get the latest none toxic clinical trial drug parp inhibitor and explain that you really need it. My oncologist wanted to put me on a phase I clinical trial to test for toxicity first in humans of the combination of the latest none toxic Astra Zeneca parp inhibitor plus Darolutamide. Maybe they could give you the drug even outside of the clinical trial. Your oncologist should contact Astra Zeneca.
He should explain that you have great difficulties with olaparib but that olaparib was very effective but you would like to avoid further damage of your heart muscle. The best would be for you to find a multidisciplinary team looking after you.
As an extended note:. It's interesting the suggestion of Oxygen therapy. On my own, I got some canned Oxygen (Amazon) for when I work out and feel a little bit of the sluggish drag or worse, feel my energy drop right through my body from head to toe... And it works! I don't have breathing issues, thankfully as the Olaparib can impact the lungs as well. But I agree with above that the Oxygen can help as I've used it and it does. It's subtle, but helps!
Also, the Olaparib trials tested for efficacy on reduced dosages, one of the few I have read that did that. As I'm always curious about Maximum Tolerable Dosage vs Minimum Effective Dosage! The drug maker recommends trying reduced dosages @ 1/2, never seen 1/4. But at the 1/2 dosage the efficacy of the drugs drops of dramatically. So it is a decision... Tolerate the side effects for maximum effect, or lower the damage to mitigate QOL issues but allow the disease more control ...
Q. It turns out cancer cells are quite sneaky and can develop resistance to olaparib, even bringing back genes they were missing before!
A. You're absolutely right—cancer cells are incredibly adept at adapting to treatments, including targeted therapies like olaparib, a PARP inhibitor. This phenomenon of resistance can involve several strategies, one of which is known as restoration of homologous recombination (HR) repair.
Olaparib works by exploiting defects in HR repair, a pathway critical for repairing double-strand DNA breaks. Tumors with mutations in BRCA1 or BRCA2, for example, are especially sensitive to PARP inhibitors because they lack effective HR repair mechanisms. However, over time, cancer cells can:
1. Restore HR Function: Some cancer cells regain function of the damaged HR pathway. This can happen if the cell repairs or bypasses the mutation in the BRCA genes, restoring their ability to repair DNA damage effectively. As a result, the cancer cells no longer rely on PARP for DNA repair and become resistant to the inhibitor.
2. Upregulate Drug Efflux: Cancer cells may increase the expression of proteins like P-glycoprotein that pump olaparib out of the cell, reducing its effectiveness.
3. Develop Additional Mutations: Secondary mutations can disable the mechanisms that made cells sensitive to PARP inhibitors in the first place.
4. Alter DNA Damage Responses: Cancer cells might adapt by relying on alternative DNA repair pathways, bypassing the need for HR repair entirely.
Understanding these resistance mechanisms is critical for designing combination therapies or second-line treatments that can overcome or prevent resistance. Research continues to explore ways to stay ahead of these adaptations, such as combining PARP inhibitors with drugs that target other repair pathways or immune checkpoint inhibitors to enhance tumor vulnerability.
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Dr. Kwon at Mayo
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