STL Mike

I had to take prednisone for different side effects. I bounced around a lot on dosage. Started at 60, tapered then up to 80 tapered, then ended up at 120 tapered down to 20 f0r a while and finally tapered off. Besides the common dark stools I experienced the whole wheel ‘o side effects every time my dosage changed going up or down. Super wired up and active, eat everything in sight, no appetite, constipation, loose stools. Check out the possible side effects for prednisone I had pretty much all of them at some point. But I was on it damn near a year until things straightened out and I got off it.

My issue was nasty skin lesions on my feet and hands. Lost 4 toe nails on my left foot.

Same thing happened to me, After 1 year Nivo was NED so went off treatment. Next scan re occurrence in lower left lung. Back on Nivo for more treatment After about another year I went off and have been NED since Dec 2017 .

Doc told me sometimes the nasties are just too small to pick up with the CT scan.

Hang in there

Mike

I go to Siteman in West county ( Olive Blvd just west of 270 ) to see my Onc. ( Jesse Keller) My Derm is on main campus at Forest Park. ( David Chen ) I started with 4 combos of Yervoy/Opdivio followed by a little over 12 months of Opdivo every 2 weeks. I showed NED and Once took me off therapy. The next scan showed a new growth in lower left lung. Biopsy came back positive for melanoma. So back on Opdivo for another 16 months. Been NED since Dec 2017.

I don’t think Keytruda was around when I was 1st diagnosed July 2015.

Good luck and hang in there

Mike

I have noticed post before claiming supporting evidence for homeopathic cures. But this one takes the cake. At the bottom is an ad for an Oriental tour to get neural cancer remedies.

Pretty much if they are trying to sell you something as a cure for cancer be it vitamins, supplements or whatever I figure it;s got to be a BS scam.

I remember when the 1st flu shots came out. I was in the military and we had no choice but to get one. I got sick as a dog. I have not had a flu shot or the flu since then.

I did get pneumococcal vaccine last year since I have had pneumonia before.

From what I understand, the vaccines are pretty much a dice roll as to whether they will be for the strain of flu that shows up.
This is just my experience and opinion. Your mileage may vary.

Everyone here understands that feeling of helplessness and uncertainty. It sometimes takes a bit for the treatment to “kick in”.

Your oncologist should be able to prescribe something for those side effects. I am not sure where you are in the world but where I am the non high inducing part of marijuana cane be prescribed as an appetite stimulant.

I had issues coping with my initial diagnosis. I went to counseling with a psychologist who was part of the cancer center who dealt with cancer patients. That may be something both of you can look in to. Being a care giver can be as tough and in some cases tougher than being a patient.

Hiccups can be caused by many things. If they are persistent, without any relief the oncologist should be able to help.

Both of you should express your concerns to the doctor.

Well wishes to both of you.

Mike

I also read an article on that. Gave me pause for thought.

I recall my Onc telling me that the response I had to the Opdivo was better than he expected.

Having read that and remembering what the Onc told me I have to wonder if my crappy ( pun intended ) might have something to do with it. I spent 16+ years in the military and ate a lot of different things in a lot of different places. For example street taco vendors in Tijuana and street vendors in other places in the world . My rule about stuff dropped on the floor/ground was that if I got before some critter did it was mine. Drop a half eaten donut or cookie in the trash?…MINE!!

I am thinking that I gave my immune system a pretty good work out thru the years and I probably have several different microbes residing in my gut.

Don’t know if my gastronomic variety had any impact on my response or not. Just something that came to mind. Next scan is 20 Aug with labs and Once visit 21st. Be damn near 2 years NED.

I understand completely what you are feeling. I was diagnosed Stage 4 with mets in liver, lungs, adrenal, lymph and bone in 2015 when I was 64. I am widowed, no kids or close family. I too had to evaluate whether or not I wanted treatment. Conventional chemo I was told would give me 12 – 13 months. I already knew I didn’t want that. But I was fortunate that I was eligible in to a phase 3 trial of yervoy/opdivo combo followed by opdivo every 2 weeks.

My thoughts were I could go with the trial and if I didn’t like how it was going I would just quit.

The biggest side effect I had for most of the trial was fatigue. I was able to keep working until I retired in Jan 2018. The biggest issue I had was skin lesions and having to take prednisone. It was almost a full year of varying dosages and varying side effects. At that time in Oct of 2017 I was NED. My Oncologist said that taking the steroids and continuing the immunotherapy was not a good option. So I stopped the opdivo and went on the prednisone.

Now that I have been off immuno almost 2 years I still have fatigue but not as bad. I also traded in my old Yamaha on a Harley and I have a road trip planned. Was going to go in July but weather and a couple other things not health related have me looking at after Labor Day.

I can’t tell you what to do. I don’t think anyone can. It’s a very personal choice. For myself I decided to give it a try. It’s worked out for me.

Next scan is 20 Aug with visit to onc the next day. Like most everyone here I take it one scan at a time.

You do what you think is right for you.

Best wishes

Mike

I started having toenail problems after about 18 months.. It started with the big toe nail pulling away from the bed on one side of the cuticle. Went to a podiatrist who removed it where it was just hanging on. ( ouch ) He gave me Silver Sulfadiazine cream for the affected areas and also recommended epsom salt soaks twice a day. I ended up losing 4 toenails on my left foot. I managed to keep one on the left and all on the right . At about the same time I noticed a slice on my hand had not healed in over a month. I also started getting what looked like blisters but they just peeled back and left an open sore. This was primarily 4 on my left foot and 2 on my left hand. I had a couple spot on my right foot. Also had some lesions on the inside of each cheek. Saw a dermatologist who did biopsies in 2 spots. Couldn’t identify the infection. So he gave me chlobetasol (sp?) cream and started me on prednisone. I did the prednisone at varying does for about a year before lesions cleared up. I am now 21 months since last Tx. Toenails still haven’t grown back. I have had red itchy bumps on both lower legs. Dermatologist wanted me to use chlobetasol again but co – pay is too much so I am using Triamcinolone Acetonide instead. It keeps the itching down for the most part.

I don’t get mani/pedi s and had not been barefoot in any public areas like swimming pools. No doubt in any of the Drs mind that this was brought on by the Opdivo.

You might want to see a dermatologist.
Hang in there

Mike

i was having some really nasty skin lesions on my feet that both the Onc and Dern attributed to the Opdivo. Thet wer both adamant that taking a steroid was a no no with the Opdivo ( this was Dec 2017 )  I was lucky enuff that I was NED since that Oct so my Onc took me off TX. I bounced dosages on the Prednisone between 5mg and as high as 120 mg for the next year before everything finally cleared up. I still have chronic joint pain and fatigue.  I seem to recal reading somewhere that onset of side effects can be as late as 3 years after initial treatment.  I don't recall how long they last but my Onc, Primary Care and derm son't seem overly concerned as long as it doesn't gey worse.  But then again I'm almost 68 so some fatigue and joint pains come with the territory.

The Onc had a secondary plan of two pills, forget the names ( I remember the cost/co pay was outrageous ), that would be the fall back if I needed more TX.

Dum nos vivere, et nostrum vivere

Mike

My initial diagosis was Stage IV, lung, liver, adrenal lymph and bone, unknown primary.  I did the Yervoy Opdivo every 3 weeks 4 times combo then Opdivo bevery two weeks.  I had treatment form Sep 2015 to Dec 2017.  I had to come off the Opdivo because of some nasty skin lesions and they planned on Prednesone as the treatment.  I had a clean scan in Oct 2017 and also in Dec 2017 when i went off the Opdivo.  Been NED up to and including today. ( knock on wood ).

I can only say it worked for me.

Mike

I was Stage IV, bones, liver, lung, adrenal and lymph. No brain mets. I was able to keep working for 2 years.  Had some side effects from Opdivo. The side effects and the Prednisone I was taking for them is when I had to call it quits.

I was lucky enough that I was able to schedule my treatments late enough in the day so if I worked through lunch I only used about an hour of sick time per treatment day.  On scan days I would usually take a vacation day so would have who;le day for scan then doc then treatment.

Family Medical Leave Act means your employer has to continue your insurance for 12 weeks.  I used all my vacation time, sick time and then went on FMLA for the 12 weeks.  I was fortunate enough to be old enough for regular Social Security so was not without income.

You can check at the social security website and play with dates to see what you can get dollar wise depending on when you choose to retire.

Mike

I have been using Siteman since my initial diagnosis in 2015. Fortunately I live in the St Louis Metro area.

Everyone takes their time to explain things and answer any questions.  The main campus of Barnes, Jewish, Christian hospital (of which Siteman is part) has specialists for whatever you need who deal with cancer/melanoma patients.  If you go to a derm, the derm will be one who deals with melanoma.

There are at least 2 satellite locations.  It depends which locations your doc services.  I am guessing you will go to the main campus of BJC.  They have a guest house there. I have never used it so am not sure how to sign up for it, but that would be an otion to overnight instead of 3.5 hours to get there and then 3.5 hours back.

Their cafeteria food is not too terrible either. For a hospital that is.

I can say that I am very satisfiesd with my exams and treatments. ( NED since Oct 2017, still doing CT every 3 months  )

 

Totally agree that getting to a cancer treatment center is the right course. The original Oncologist I saw for the diagnosis gave me 12 – 13 months on chemo ( satge 4 unknown primary. Mets lungs liver, bone, adrenal, lymph ). He sent me to Siteman. I got in on a stage 3 trial of the Yervoy/Opdivio combo. I have been NED since Oct 2017 and will be 4 years from initial diagnosis this Aug. The oncologists who specialize in melanoma keep up with the latest breakthroughs. Plus at a treatement center you pretty much have all the docs you need in one place. Derm, Radiology and all the scans and labs too.

Hang in there,

MIke