Side effects/

Posted By
Sharon93065
6/19/2017 5:15am
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Replies: 6

Hi, I am 70 years old and live in Simi Valley, So. California.

I have a Viking River Cruise booked and paid for Nov 9th.  Keep changing  my mind on canceleing it.

I had a melanoma mole taken off of my page in 1991,  Plastic surgeon took out a hung, it was Clarks type II.

In Feb i was sick, went to Dr and told her I'm going on vacation with my daughter and grandchildren next week, and i don't want any surprizes.  She called a week later while i was in Texas to say it looked like I had pneumonia, and prescribed antibiotics.  When i got home and several weeks later I read the xray report, it said pneumonia or lung mass.  Well i had a physical and another xray and it said lung mass ct scan recommend.  Then  Petscan. I 'lighted' up.  Lung, lymph nodes in chest, abdomen, groin, armpit,  and a large lump on my back that i had thought was a fatty tumor.  CT guided needle biopsy from lump on back came back melanoma.  What we thought was lung cancer was  metastatic melanoma.  I am still in shock. Everyone else is more upset than i am.  Maybe because I'm just  not ready to go see God  yet.

After doing nothing but reading and googling for weeks until our first appt with oncologist, Dr Wang, Kaiser Woodland Hills, said.  "Not curable, but promising results with Immunotherapy."  I'm glad  I bring my daughter to my visits because she remembers everything he says.  On second visit he said bood news, I tested positive for the Mutant Gene.  So after 4 rounds of Opvido, Yervoi 3 weeks apart, I will be eligible for Targeted Therapy.

I've had my first treatment and no side effects, waiting for the shoe to drop.  Will it be  bad after the 2nd and 3rd?  I've read how everyone gets so sick they are hospitalized???

My cousin was at UCLA and was talking to a melanoma patient, that was swollen  up and had autoimmune disease from the treatments, but was cancer free!  And he had many tumors.

I had booked a Viking River Cruise to Paris for Nov 9th wondering if I should cancel?  Was everyone able to do the 4 treatments?  4 treatments of Yervoiand Opdivo, then continuing with Opdvio.

Ed Williams - (6/19/2017 - 10:00am)

Hi Sharon, here is a video link to Dr. Michael Postow of Memorial Sloan Kettering of New York talking about Immunotherapy side effects and how to treat them (current). It is hard to give you specific advice because every one is so different in how their bodies react to Ipi and Nivo. Best Wishes!!!Ed  http://learn.peerviewpress.com/p/index.html?collection=150204255-2-2&pre...

Sharon93065 - (6/19/2017 - 12:46pm)

Thank you I am more hopeful.

Sharon93065 - (6/19/2017 - 12:46pm)

Thank you I am more hopeful.

Hi,

I'm stage IV and have also done the immunotherapy.  My story in brief is below.  I hope it is helpful.  

I was able to do 2 treatments of Yervoy/Opdivo before I had any side effects.  I had over twenty tumors when I started.  I went on steroids for four months until my side effects were under control.  I ended up with almost all the tumors shrinking.  I had one brain met pop up while off treatment and had surgery to remove it but then it started growning back.  I started radiation and went back on Opdivo only and so far am doing fine with it.  I've seen many posts of people tolerating all four combo infusions.  My oncologist said 50% of those who had side effects on the combo experience side effects on the Opdivo alone.  I just had my sixth infusion today and so far I only have some mild itching. 

Again good wishes to you.  May your journey be easier than expected.

Jennifer

Hukill - (6/20/2017 - 9:51am)

I had 5 combo doses and 17 nivo alone. I have had 5 or 6 side effects at the same time but none were severe and I never missed a treatment. So be happy if side effects show up because your body is reacting to the drugs.

Mat - (6/20/2017 - 10:38am)

I tend to be pretty conservative when it comes to travel while on treatment.  I personally would not consider leaving the country while in the early phases of ipi/nivo.  I certainly wouldn't consider being on a cruise ship.  But that's just me.  If you decide to go, I would consider looking into special medical insurance.  Good luck.