I have been through chemotherapy, big setbacks, complications and side effects from medications. What I am learning from this 10 year journey is that even thought we have all this new medications there is more and more of incidents of side effects. They are hard to detect from a small trials but once you offer the medication to wide public the side effects become more obvious.
We need those medications as they are helping but I do not want to lie to myself that we are one big experiment for the drug companies and very profitable one. They do not know the long term consequences of the medications. They do not know the dosages. The only hope for us is that the next generations of drugs will be less harmful.
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pragnar
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I share your hope that we will have newer and better drugs in the future. We are seeing that now as many novel drugs have less side effects than chemo options and we are seeing second generation novel drugs like acalabrutinib that has less side effects than ibrutinib. There are second generation venetoclax drugs in the works now.
I agree the pharmaceutical companies are move driven by profit than for any altruistic reason. I see that as a good thing though, its capitalism at its best. The market for the cost of treating Cll and related leukemias is measured in the billions of dollars. That is the incentive for pharma companies to spend millions of dollars in research and development to develop new and better drugs for cll.
It sounds kind of morbid to put it this way, but I feel fortunate to have a big market cancer. People with more rare and unusual cancers and illnesses do not create a big enough market to incentivize pharma companies to spend on development, much less fund immensely expensive clinical trials. As a consequence, people with more rare cancers lack the treatment options we have.
Do no get me wrong, I have no love lost for big pharma. Its more of a business relationship. I have leukemia and I need the best drugs possible to treat me, I need big pharma. Big pharma needs me and people like me to justify their investment in new drugs. Its an unholy alliance.
The side effects of some of the drugs we take do suck. But the side effect of not having these drugs is death for some of us, just keeping it real. Ibrutinib might well have all sorts of long term side effects that manifest ten years or more out. Most people in the original clinical trials for ibrutinib probably only had a few years to live having exhausted other treatment options. Whatever side effects ibrutinib has ten years out would be worth it to them.
Thanks for raising a topic of considerable concern to many of us.
Further to Cajunjeff's reply, while side effects are a significant problem which can unfortunately be the reason for a considerable percentage abandoning treatment (about 20% ceased taking ibrutinib, because it either stopped working or the side effect profile was unacceptable), progress is being made. There are at least 20 BTK inhibitors available now, with 12 in clinical trials and 2 FDA approved for CLL: healthunlocked.com/cllsuppo... Those later generation BTKi drugs are better targeted and hence are generally proving to have a lower side effect profile, thereby realising the drug company's hope of producing a successful alternative offering. Ditto for venetoclax. A prior version (navitoclax - ABT-263) adversely impacted platelet counts. Unfortunately, that competition isn't (yet) reducing prices, which is in part due to the fact that CLL has orphan disease status in the USA and Europe, to encourage the development of new drugs which otherwise would not be considered viable.
I think part of the reason for side effects being perceived to be increasing is that we are all (thankfully) growing older. FCR used to be the 'gold standard' treatment for CLL, but was not recommended for those over 65. There isn't that age limit on the newer drugs.
With respect to dosages, these are worked out in phase 1 of a clinical trial, where brave volunteers try a range of dosages to determine what dose is required to be effective and whether that dosage can be achieved with what is considered to be an acceptable degree of side effects and adverse events. There is definitely more need for carefully constructed trials to determine whether some patients can successfully manage their CLL on a reduced dose treatment once their tumour load has been significantly reduced. There have been a number of reduced dose ibrutinib trials, but frustratingly, they haven't recorded patient weight/BMI, so we still lack clear guidance on whether it is safe for a given patient to reduce their dose. Also, don't forget that it is usual to take a range of support drugs to reduce the risk infection (prophylactic antibiotics and antivirals), tumour lysis syndrome, anti-nausea/diarrhoea, atrial fibrillation, etc. These also can cause side effects!
"All we are saying, is give peace a chance........."
The message remains unchanged 50 years on. Whichever country we live in, if we used the military budget to look after the people, then imagine what our health research and healthcare systems could be like. And education, and housing, and parks, and aged care............etc.
Oh look - there is a flight of pigs passing across the sky outside my window right now.
I feel your frustration. I’m in a clinical trial and realize I’m a guinea pig. I have 3 pages of possible side effects for ibrutinib and venetclax for waldenstrom. I developed one: afib. It’s a heart condition that can be treated with meds so they’re added to my treatment and now start seeing a cardiologist.
But, I believe a lot of progress has been made this century with blood cancer treatment due to trials. We’re all short term in trials and long term effects can only be determined with more people and years after trial.
I realized that I was a guinea pig when I signed on in 2016 for my Phase 1 first in human CAR T that was being tested for safety in incremental increase of Dosage for my grade 2 stage 4 Follicular NHL at NIH. I was given only a low dose of my Re-engineered T cells back to me. I had only low B/P from that and a 3 year Complete Remission in 2016 to 2019. Unfortunately my Follicular NHL came back in 2019 and I had another biopsy and testing done again at NIH and it was still Follicular and had not transformed into any other kind of Lymphoma. So, according to my 2016 CAR T trial protocol, I was allowed to get another dose of my 2016 re-engineered T cells back. So CAR T team gave me a second dose of my previously frozen (from 2016) re-engineered T cells back to to me but this time at a much higher dose since now (in 2019), 19 other patients had now gone before me. This second time in 2019, I got 10X the dose of my previously frozen and now 3 years old re-engineered T cells back. This second time, I had again 9 inpatient days but this second time, in 2019, I had 5 days of fevers of 103+ degrees. This second time was before COVID so my team had all the lab people who worked on my re-engineered T cells come in to meet me. Plus, Dr. Steven Rosenberg also came in twice and he was one of the NIH pioneers of CAR T. Everyone thought, including trial docs, and me and husband that now I will get a very durable CR since this time I did have fevers of 103+. Unfortunately, this second time I only got a 6 month CR . And my NHL did come back but only in two small places, one near my spine and one near my Aorta. So trial team did an aspirational biopsy and my Follicular NHL had transformed into larger, more aggressive B cell Lymphoma. So I went on NIH VIPOR trial in summer of 2020 and am now in a 13 month CR. I did not mind being an experiment as it has kept me alive and relatively well and I do feel that with all the blood work and check ups, my NIH teams have learned a lot about my Lymphoma. Today, I ride my bike 12 miles a week and am still alive to really enjoy life.
If billionaires like Richard Branson & Elon Musk used their money on medical research instead of on vanity projects like space tourism , who knows a cure for CLL & other Cancers could be found in our lifetime
I agree. In fact, I’d shutdown all space projects for the next hundred years. Don’t get me wrong; I am fascinated by space and everything to do with it, but NASA’s budgets would make significant inroads in saving THIS planet, and a 100 year hiatus in their spending wouldn’t make a dent in their overall (super-long term) objectives. And if there’s anything left after climate change has been dealt with, they can cure cancer, too.
True. Odd the prices are considerably lower in other countries.
I felt Ibrutinib was killing me, although it did get my Cll under control. I developed side effects not even listed. I know they were side effects because as soon as I started Alacabrutinib they were gone. A miracle.
Although Alacabrutinib isn't the answer for everyone, so far is a blessing for me. It has finished the job Ibrutinib started continuing to bring my lab work deeper into the normal range. After a year of taking Alacabrutinib even the bruising, the least of my worries, went away. I do have an occasional slight headache which quickly goes away.
I am very grateful for the research of doctors and pharmacies who discovered these medications which have basically saved our lives. Also fortunate they are available to us and I am able to afford them.
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Encouraging results from son of Ibrutinib studies (Acalabrutinib/Calquence)
Slowly healing cuts - does honey offer some help
My first appointment at MDAnderson and then the trip home.
Don't give up just enjoy each day!
Do we all qualify in UK as High Risk and NHS letter?
