Opdivo caused hyperqrowth of tumors

Joan M

I had one infusion of Opdivo on July 1, 2020.  I ended up in the hospital on July 4th due to low oxygen levels and extreme tiredness caused by one treatment of Opdivo.  I also had a headache for several days and was treated for  pneumonia but the hospital I was at didn't diagnose or treat the reaction to Opdivo even though I told every doctor about how my symptoms started when I got the infusion.  I was very upset that my local oncologist didn't come to see me in the hospital because we had discussed the possible side effects and what I was supposed to do-report symptoms and  go to ER.  I was in for almost  two weeks du which my tumors increased by 20%.  that in itself showed the rare reaction but was not diagnosed by local doctors.  Instead they told my family that my cancer had mutated and I was basically going to die soon  according to my daughte,   One doctor said the trip to Mayo was a waste of time.  

I was put on IV antibiotics and oxygen and had a heart monitor.   Almost had a heart attack too while there.  While  there I was able gore an orthopedic surgeon who diagnosed a tumor that had gone to my pubic bone and a break in the same bone.  That explained the extreme pain I had been experiencing in my left groi and thigh.  He referred me to the doctor at Mayo who had treated a different bone tumor last year.  so I traveled to Mayo one week to confirm diagnosis and the next for radiation .  

unfortunately an X-ray and a follow up appointment with the orthopedic dr shows the bone fracture isn't healing and the bone cancer may have spread.  So I have been really upset since hearing that and starting to lose hope.  esp because the bone tumors are so painful.  It gets to a 10 plus level that is unbearable if I'm not over medicated and passing out off and on all day.   

I've been told for four and a half years that my cancer is slow growI gotta.  Last spring I was told I probably have 10:years left and that lonsurf would help keep,the tumors from growin.  

After holding hope for a cure it makes me so angry that the immunotherapy that has helped so many people beat cancer caused my slow growing cancer to go crazy and now possibly shortened my life to a few months if I'm lucky.  

I will be back to Mayo this week and hopefully learn something about my current condition if there's any hope or just need to plan a funeral.   Very upsetting because my daughter is getting married in a few weeks.   I also have a grandson due beg of October.   Trying hard to fight oncoming depression so I can  enjoy the time I have left.  

good luck to,those of you fighting cancer and caretakers.  Im happy to have my husband home with me for now and family close  by to help.  My granddaughter who loves to spend time with me if nothing else to use my Apple tablet.  Lol. I love that girl. 

please read the warnings and don't always think the bad side effects won't happen to you.  

 

Joan 

Real Tar Heel

I'm sorry to read this and I

I'm sorry to read this and I wish things could be better for you. What you're going through sounds excrutiatingly painful.

It's frustrating to be living in a time of wild technological advances when cancer remains such a mystery.

Perhaps cancer researchers need to say that there is a link between a cure for cancer and perpetual erections, maybe that will pump some money and urgency into research

It seems like our doctors don't know so much but they are saving lives and extending lives.  New treatments are hitting the market but when you look at the research, they give you 2 or 3 months more than the control group. Is that really an advancement? What's 3 months when you want to make it to see the grandkids start school?

I hated chemo and I think my treatment caused my blood sugar and BP to go bananas, never had issues before. But, would I still be here now if I hadn't had it? Docs warn us of some side effects but do they know all of them? What have they missed? How can we know with no training? We come here and talk to each other...

TBH I'd love to have my docs be able to say, 10 years definitely, after than no promises. I'd chill so hard, lol. But they never know anything for sure. They're responsible for what they tell us. I'm unhappy that your doctor gave you such a definite figure because they can't guarantee a thing. They can give us hope but they can't give us a date. My docs had curative intent at first, and while that's still their goal, we know recurrence is more likely than not.

I wish you luck.

Canadian Sandy

Joan.....I'm so sorry that

Joan.....I'm so sorry that your having such a hard time. I hope things get better shortly. Doctors don't know how long we have left so keep on hoping you'll be around for awhile.

Your in my prayers.....keep the faith!

Annabelle41415

I'm so sorry

You are experiencing awful difficulties and I'm not sure what to say to give you advise.  You are right about the warnings though and even doctors don't tell you everything.  Hoping that you get some answers soon.

Kim

PamRav

Sad to hear

You are going through very rough times.  I hope that Mayo will have something positive to offer, and that your pain can be controlled   Wonderful that you have your loving family around you  

sending positive energy and prayers your way.  
pam 

Trubrit

This is horrific news

I am especially sorry that you are in so much pain. Pain alone can wear you down to nothing, it can drain you of the hope you so need right now.

Have you asked about Fentanyl? It is the most powerful drug, but something that might knock your pain down. 

Don't listen to any stats or numbers, they mean absolutley nothing in this fight. You may outlive or underlive those numbers; they do nothing but bring you down and suck hope from you. 

You are in my thoughts and prayers.  Cyber hugs!

Tru

 

beaumontdave

[Content removed by CSN Support Team.], there's nothing

[Content removed by CSN Support Team.], there's nothing remotely fair about this disease, and I'm so sorry it's taken a hard turn because of this treatment. I wish you better results, and less pain and fear, if it can turn one way, one should be able to believe it can turn the other way. I've been in the place where I could only hope and be ready for whatever came, but the pain and fragility weren't mine to bear. I hope you find the strength to deal with this turn in the road................................................Dave

Trubrit

beaumontdave said:

[Content removed by CSN Support Team.], there's nothing

[Content removed by CSN Support Team.], there's nothing remotely fair about this disease, and I'm so sorry it's taken a hard turn because of this treatment. I wish you better results, and less pain and fear, if it can turn one way, one should be able to believe it can turn the other way. I've been in the place where I could only hope and be ready for whatever came, but the pain and fragility weren't mine to bear. I hope you find the strength to deal with this turn in the road................................................Dave

Naughty Dave...

I'm thinking you used a strong word to describe how hearing about Joan's news, felt to you. 

But, we love the mods, and I'm glad they can just delete what is naughty and not everythign. 

Tru

Joan M

Update after new scans From Mayo

Hello everyone, thank you so much for your kind and caring words.  

Yesterday I met with my oncologist at Mayo Clinic, Dr. Jin.  My new scans show some mixed results after the hypergrowth caused by Opdivo after the July 1st infusion.  The scans done a month ago showed that the Opdivo actually caused some previously too small to see tumors to be visible, and the smalol one to grow ito a measurable size.  

THe August 20 scans which were a month later show many of the  tumors have stayed the same size as the July 22 scan which was after they grew by 20% from the Opdivo.     Some have shrunk slightly which  the docctor said is from reduction in inflammation caused by the immunothherapy after i was on predisone for a month.   

The most upsetting outcome was that the bone tumor  in m superior pubic ramis, which  I received radiation for at Mayo last month is actually growing slightly as is the bone tumor in my inferior pubic ramus which was radiated last year also at Mayo.  These tumors have caused a great amount of pain in the past which was minimized by the radiation.  Sadly the radiation oncologist, Dr. Haddock,  said they may not be able to use much more radiation in the public area due to fears of damaging my bladder and other vital orgais in that area.  

Dr Jin said the best option for me now is to try Lonurf and Avastin but said the statistics are not good - only 1.5% response rate and only for4 to 5 months.  He recommends finding a trial when that stops working.    

Today I will be undergoing an ERCP to replace my gallbladder stents.  I will also need a stent in my bile duct because there is now a tumor in my liver which is putting pressure on my bile duct.   

Please pray for a successful procedure and that the Lonsurf and Avastin combo will work for me for years to come.  I am not ready for the end stage conversation even though I've had this awful diisease more than four years.  Not sure if I'll  ever be ready for that.

God bless you all who have been deallin with cancer as patients or caregivers.

Joan  

Joan M

Trubrit said:

This is horrific news

I am especially sorry that you are in so much pain. Pain alone can wear you down to nothing, it can drain you of the hope you so need right now.

Have you asked about Fentanyl? It is the most powerful drug, but something that might knock your pain down. 

Don't listen to any stats or numbers, they mean absolutley nothing in this fight. You may outlive or underlive those numbers; they do nothing but bring you down and suck hope from you. 

You are in my thoughts and prayers.  Cyber hugs!

Tru

 

No Fentanyl prescriptions yet

That may be something I will need in the future.  I've been using oxycodone and OxyContin however my doctor is prescribing lower douses than I need (only 5mg of oxycodone and 10 mg of OyxContin) so I have to take 2 or more pills sometimes and then run out.  I usually only have access to one or the other, so am not able to take both to get the immediate release pain relief and the long acting for overnight.  Doctors are afraid to order OxyContin for any length of time so Im glad  to get anything.

I'll  have to go to a pain management doctor to deal with what may be become worse if I cant get radiation for bone tumors in pubic area.  The tumor in the superior pubic ramus caused a frature which is close to the left hip joint and has caused me to begin a wheelchair until it heals. Unfortunately it is not healing properly so I will be in the wheelchair for an indefinite period of time.   

SnapDragon2

Not sure if it would help but

Not sure if it would help but after my surgery it was prescribed to take the oxycontin (10mg) with advil wait 2 hrs and take a tylenol.  Maybe check on something like that with your drs for pain management.

I am so sorry you are going thru this.  No one should have to endure the pain of it if possible.

Annabelle41415

Joan M said:

Update after new scans From Mayo

Hello everyone, thank you so much for your kind and caring words.  

Yesterday I met with my oncologist at Mayo Clinic, Dr. Jin.  My new scans show some mixed results after the hypergrowth caused by Opdivo after the July 1st infusion.  The scans done a month ago showed that the Opdivo actually caused some previously too small to see tumors to be visible, and the smalol one to grow ito a measurable size.  

THe August 20 scans which were a month later show many of the  tumors have stayed the same size as the July 22 scan which was after they grew by 20% from the Opdivo.     Some have shrunk slightly which  the docctor said is from reduction in inflammation caused by the immunothherapy after i was on predisone for a month.   

The most upsetting outcome was that the bone tumor  in m superior pubic ramis, which  I received radiation for at Mayo last month is actually growing slightly as is the bone tumor in my inferior pubic ramus which was radiated last year also at Mayo.  These tumors have caused a great amount of pain in the past which was minimized by the radiation.  Sadly the radiation oncologist, Dr. Haddock,  said they may not be able to use much more radiation in the public area due to fears of damaging my bladder and other vital orgais in that area.  

Dr Jin said the best option for me now is to try Lonurf and Avastin but said the statistics are not good - only 1.5% response rate and only for4 to 5 months.  He recommends finding a trial when that stops working.    

Today I will be undergoing an ERCP to replace my gallbladder stents.  I will also need a stent in my bile duct because there is now a tumor in my liver which is putting pressure on my bile duct.   

Please pray for a successful procedure and that the Lonsurf and Avastin combo will work for me for years to come.  I am not ready for the end stage conversation even though I've had this awful diisease more than four years.  Not sure if I'll  ever be ready for that.

God bless you all who have been deallin with cancer as patients or caregivers.

Joan  

Procedure

Sorry that my post is a day later than your surgery, but I'm praying that all was successful yesterday.  I'm sorry that you are going through all this.  Wishing you the best in the upcoming treatment that you will have.

Kim