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My sister-in-law was diagnosed with stage 4 metastatic cancer that spread to her brain and liver. After much testing, it was discovered that the primary source of the tumors is in her lungs, and remains there. She had the Gamma ray procedure early on to zap the size brain lesions, the ultimately had the most dangerous surgically removed.
She’s been undergoing chemotherapy treatments and has since been advised that it has been unsuccessful. She is now receiving Opdivo treatments every two weeks; just had the second treatment. Unfortunately, I ask her more questions than she asks her team of doctors, so I have no clue about her life expectancy with this new treatment.
What I want to know is how long these treatments will go on, and to what extent before it is knows whether it is helping?Reply
I am sorry to read of your SIL’s metastatic lung cancer. The answers to your questions “What I want to know is how long these treatments will go on, and to what extent before it is knows whether it is helping?” Is, as long as the Opdivo is working and that depends on the cancer. What I am saying is, if Opdivo shrinks your SIL tumors or even if they stop growing, your SIL will continue to take this drug. If your SIL’s tumors continue to grow then this therapy will stop.
Having said all that, I am not an oncologist. Your SIL’s onc. will do what he/she wants to do.
Let me know if you have any questions.
You are so wrong in your assessment here! I have been on Opdivo now for 1 yr for Metastatic Melanoma with metastasis to my Heart, Lung, and Liver. I was originally treated with a combo of opdivo and Yervoy, for 3 months (I was on a clinical trial at Karmanos Cancer Institute in Detroit so no cost to me). Then I went on a regimen of Opdivo (nivolumab) infusion every 2 weeks for the next 10 months (yes, at a cost of $20,000 per infusion). I did have to max out my insurance plan ($5,000) plus I pay $1,300 monthly insurance premium). As of today, I am completely clear of all the cancer – the Opdivo “melted” the tumors by harnessing my own immune system to recognize and go after the cancer. It is a true miracle. No amount of supplements, diet, etc would have given me this outcome. Before I started the treatment I was under the care of a chiropractor with a specific anti-cancer diet with supplements that was putting me in the best possible shape – So I was in good shape to begin with. Before the Opdivo, the lining around my lungs and heart were so inflamed from the tumors I had to have the fluid surgically drained, with drainage tube left in my heart and lungs as the inflammation from the Heart and Lung tumors was so aggressive – again I was on a specific anti cancer diet at the time! So….dont be so quick to take away people hope here….these drugs do work….I do believe the drug companies are gouging here with the extremely high costs….but you do what you have to do to stay alive. I would appreciate it if you would amend your article here to state, that yes, sometimes these drugs will save your life….some cancer come on very quickly, like mine did…..and despite a healthy lifestyle and anti cancer diet, you can still become very sick, and you need to act quickly to save your life….that’s what happened to me. So don’t diss the drugs…….they can be lifesavers! By the way I’m only 60 yrs old, and because of Opdivo, I am here to witness the birth of my Grandson….without the Opdivo I would not have survived the 18 months I have now lived since my diagnosis.Reply
Thanks for reaching out. Your story is compelling. You understand all sides of the issues. With your permission I would like to create a “profile in courage” of you on PeopleBeatingCancer.org. To do so I need your permission and your background- when you were first diagnosed, what stage, what therapies, etc. And anything else you would like to include.
Profiles in Courage on PBC give readers a more personal view of the patient experience.
Let me know if you are interested. Thank you for your time and attention.
Thank you David for your reply. Would you mind telling me what kind of non-toxic therapies you would suggest?
I am both a long-term cancer survivor and long-term cancer coach. If you are serious about wanting to learn about those evidence-based (supported by research) non-toxic, anti-bladder cancer therapies for your mom, the process would be for me to learn what therapies
your mom has undergone (chemo, radiation or surgery) to determine both those therapies that are integrative as well as therapies that are are cytotoxic to bladder cancer by themselves. Combined with anti-angiogenic nutrition, an anti-cancer lifestyle, bone health and mind-body therapies (yes there are evidence-based mind-body therapies for cancer patients) you will be supporting your mom as fully as non-conventional therapies can.
I will be direct, I ask those interested in cancer coaching to make a modest one-time, tax-deductible donation of $149 to PeopleBeatingCancer.org, an IRS approved 501c3 that I direct.
Let me know if you have any questions.
My mother has gone through chemo for bladder cancer. She is 81 years old and was otherwise in great health before chemo. I am trying to look into nivolomqb as her doctors in Argentina seem to have given up. I am not sure if it is because it’s not available or they just determined she’s too old to try other options but she doesn’t want to die and we don’t want that either. My questions would be, has this been tried for this kind of cancer that’s closely related to lung cancer? Do you know if it is available abroad?
As far as quality of life, hers is not good at the moment so if we could find anything that could make it better, we certainly would. Thank you.
Yes, nivolumab can help patients with advanced bladder cancer.
I have no experience with Argentina’s health system therefore I do not know if this therapy is available. As for improving your mother’s quality of life, I can suggest only those evidence-based, non-toxic bladder cancer therapies that may be available.
Hang in there,
my husband was diagnosed with stage IV squamous cell throat cancer- received full radiation (43 treatments) and 3 rounds of cisplatin. Residual damage – ONJ- 2 carotid artery bleeds and loss of all soft palate. We found progression of the disease after 1 year and the dr is recommending Opdivo as only possibility since resection is not available and toxicity is too great. The insurance has denied the claim and the medical company is asking for medical records and financials upward to 35k?
What have been the real clinical trial results? Has Opdivo been really the cure drug or just the money drainer for those that are desperate?
Your comments are appreciatedReply
It sounds as if your husband has been through the ringer. I am sorry for this. Also, I have some idea how difficult it is to be a caregiver in this sort of case.
To answer your question “What have been the real clinical trial results? Has Opdivo been really the cure drug or just the money drainer for those that are desperate?” as you could interpret from my blog post, I think charging 000’s of dollars for a small chance of a few extra month of life is a travesty. I believe this is a huge problem for conventional cancer care in the U.S.
There are specific study results in the article linked below. This is a current study of esophageal cancer patients so the info is as close to your situation as possible. In short, 000’s of dollars for a 14% chance of a temporary tumor shrinkage. With “tolerable” side effects.
There is no mention, no hint of a cure. I do think that this is a small chance of additional time with a loved one. But at a high dollar cost.
My cancer (multiple myeloma) is considered to be incurable. While I have been in complete remission since 4/99 I have developed a plan B in case I relapse. My plan B consists of high doses of several evidence-based, non-toxic supplements shown to kill cancer as well as several non-conventional but pretty well-studied therapies. All fairly inexpensive.
My point is that there are many therapies out there with efficacy as good if not better than opdivo/nivolomab.
Researchers Explore Opdivo for Two Gastrointestinal Cancers –
Let me know if you have any questions.
Hang in there,
You bring up excellent points and the cost analysis of these chemotherapy agents vs. benefit needs to be addressed by our healthcare industry. So many are criticizing the ‘affordable care act’ as not being affordable- but the problem is not socializing medicine, the problem is that these drug companies get their treatment FDA approved and laugh all the way to the bank, while all Americans have to pay that $120,000 that is paid by insurance. What is absolutely reprehensible is that Opdivo is being marketed on prime time tv- extensively! Who is paying for this? The drug company? No way- we are- all of us, as these tens of millions that are being spent on advertising are part of why these companies are charging $143,000 for a year’s treatment.
All too often we equate getting a treatment like Opdivo with having more hope for cure, when there truly is not a cure, and in fact, these therapies can detract acceptable quality of life, making valuable days significantly miserable.
Well said Saul- do you have personal experience with cancer and or FDA approved drugs?
I was diagnosed in Sept. 2913 with Stage IV link cancer metastasis to my brain. I was given 3 weeks to live. I have been in clinical remission since Apr. 2014. I am about to begin Optivo. I am willing to pay my limit of $6500 out of pocket to add 7-11 additional months to my life. Quality is important but time may give me availability to a cure. I’m waiting for a cure. God knows my date and time of my death. I accept His choice. I refuse to go until I’m called Home. My problem is expensive Optivo or free clinical trial.Reply
Your comment tells me that you clearly understand the pros and cons of Optivo therapy. Further, if you have been in clinical remission since 4/14 after being given only 3 weeks to live you are doing very well indeed.
Between you and me I’ve never put much stock in the prognoses of oncology. I know too many cases where oncs were too conservative.
To clarify, are you saying that you were diagnosed with “stage IV lung cancer mets to your brain?”
Do you have a question for me or are you simply doing some research for yourself. Is there any research I can do for you?
Hang in there,
My husband has been diagnosed with lung cancer. He is presently undergoing half doses of chemo, but his quality of life is very poor. He is suffering from disabling fatigue to the point where I do EVERYTHING for him. Very unlike his former life. If we invested our savings in trying to save his life, would he feel any better than he does now? I will do anything to keep him with me, but I don’t want to prolong his life if the quality was not good. Quite a dilemma for all of us who love him very, very much. Please respond. Thank you.Reply
I am sorry to read of your husband’s lung cancer and all of the difficulties his cancer is causing. Let me say that I believe that cancer caregiving is in many ways more difficult than being a cancer patient.
Yes, chemotherapy is expensive even with the best health insurance. Yes, chemo and other toxic therapies cause debilitating collateral damage aka side effects. Depending on the type of chemotherapy I can offer research about antioxidant supplementation that is cited to reduce the collateral damage that chemo causes.
I do not know of supplementation for opdivo or keytruda. I do know of supplementation for other chemotherapy drugs. If you are interested in learning more you will have to give me the names of the chemotherapies that your husband is taking.
In short, you are facing the main difficulty of a serious cancer diagnosis (lung cancer is a serious cancer depending on the stage at diagnosis). I agree that quality of life is more important than length of life. I am sorry that I cannot offer many ideas that can address your dilemma. You are in an impossible position.
Please let me know if you have any questions.
Have you looked into immunotherapy? Sometimes drug companies will help you with your finances I know a girl that flies into my city every month to get treatment and it doesn’t cost her a thing I’m lucky I have excellent insurance also we juice we have a great juicer and we juice organic carrots beets celery Tumerick ginger and garlic every day we bought the omega juicer it was a little more but we bought a less expensive one and it quit working in a month I really think juicing helps with fatigue because I rarely get fatigued but boy when I get fatigued it’s awful and I feel for you I know my husband is the main caregiver now and it is taking a toll on him as cancer patients can be quite difficult at times no matter how positive we try and be just hang in there and keep Trying there’s people that are praying for you that you don’t even know , please be positive I know it’s hard ,look into drug companies that pay for cancer treatment and try juicing and hang in there .Reply
not only is the cost outrageous but what is the quality of life that is extended? if you are saved by the blood of Jesus Christ you do not fear what each and every one of will face and knowing where you will be and awaiting your loved ones makes these meds odious at best.Reply
As a mother and wife fighting for her life with stage four melanoma I can explain a little bit about the quality of life that you have while on Opdivo. Every three weeks I receive an infusion that lasts about an hour through a port in my chest Of Opdivo ,after that infusion I receive an infusion of a drug called Yervoy that takes about an hour and a half between the monitoring the port cleansing it takes about six hours in the infusion clinic ,that to me is six hours of hope that I can live a longer life and be there for my 15-year-old son and my husband .
Why would God give me such an incredible opportunity? Because I accepted Jesus Christ my Lord and Savior in my heart as a little girl I’m extremely grateful and I thank the Lord every day that I have this opportunity to be around my son and my husband just A little bit longer .
This miracle drug has shrunk a softball sized tumor in my leg to the size of an almond in two treatments , it has a given my family hope and if I have to do Opdivo for the rest of my life in order to remain living that’s what I’ll do I’m not afraid to die but I would never let my son see me give up . I count my lucky stars every single day and my quality-of-life is excellent but I guess it’s all about positive attitudes first I think people with positive attitudes who are grateful , have a better quality of life whether they have a terminal illness or not . If you should ever have the unfortunate experience of having a loved one with cancer please be a positive force in their life and remember to be grateful and I think you’ll live a lot longer in general and so will they.
Your way off on the money. Even a 60/40 plan has a limit of 6,500 then you pay nothing.. Most plans are between 2,000 to 6,500 max!Reply
My judgement is clouded by my family’s health insurance being a $10,000 deductible. But $6,500 it is. Are you saying it is okay to pay $6,500 for an average of 4 months of life over a less expensive therapy? 4 months with collateral damage?
thanks for your input.
Your math is correct but your logic is not.
If the drug’s list price is $143,000 annually per patient, then the insurance companies normally pay something less than $143K.
With a 20% cost-share for this chemotherapy, you will have to pay about $28,600 only if the insurance company has failed to negotiate a discount on the drugs.
What is Medicare allowing for this drug?
The Medicare cost-share for patients is 20% for Part B drugs, and most cancer drugs are covered under Part B.
Thanks for your comments. So I understand your post, are you saying that I am incorrect in saying that patients will pay 28k for these drugs? My logic or the point of the post was to try to explain to cancer patients that spending money, even 10k, for a chemotherapy that caused serious collateral damage and gave an average of 4 months of life should be questioned.
I welcome your input. If you think that this logic is incorrect I would like you to weigh in.
What are the costs for chemo vs taking a pill a day (Opdivo)? Why won’t the drug companies make it more affordable for a cancer patient so that they can have some more time on this earth with family and friends.Reply
You are asking one of the great questions of our time. Keep in mind that both chemo AND Opdivo are both expensive. The answers to your question involve 1) your health insurance coverage (does your plan cover opdivo?) and 2) what chemotherapy regimen are you considering? A key consideration should be what are possible integrative therapies for your chemo regimen. In other words, there are antioxidant supplements such as curcumin and resveritrol that have shown the ability to both enhance the efficacy of a conventional chemo such as oxyplatin while reducing toxicity again of oxyplatin.
What chemotherapy are you considering?
My mother has just been diagnosed with lung cancer. She lives in the UK. Where do I take her to receive Nivolumab? Iknow it is going to be expensive but she is my mum. The NHS does not administer the drug but I want my mum to live.
Any help would be grateful.
I am sorry to read about your mom’s lung cancer diagnosis.
Two things. Opdivo/Nivolumab is being marketed as a melanoma therapy. More importantly, your mom needs to be genetically tested to determine her status or possible response “PD-1 inhibitor”therapies.
“Ono is marketing Opdivo—whose generic name is nivolumab—in Japan as a treatment for unresectable melanoma, a deadly form of skin cancer.”
Have her go to Karmanos Cancer Institute in Detroit Michigan. Great doctors and they have this drug!Reply
If you choose to agree to a PIC please include info about your experiences with Karmanos.
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