First Double Dose of Opdivo

Ted, I'm sorry you're going through this. So far none for my husband but he's only had a couple of infusions, and we don't know if he's getting the larger dose of nivo or smaller dose with 1/3 dose of ipi. 

But as to arm sticks, I think a lot has to do with the nurse's skill. No one ever misses my husband's veins, but a less experienced nurse couldn't get a vein at all for one infusion – she had to bring someone else in. He ended up with a 6" bruise. After that he's asked for the experienced nurses for labs and infusions. And being super hydrated may help. I have terrible veins, and start pushing water a couple days before blood work. 

My husband just (today) has his second double dose. The first was similar to your reaction- the normal side effects but a little stronger and faster.  Today the doctor wrote for the double dose over half an hour rather than over an hour as he was used to. He had some different reactions. Some neck pain that moved to his head and a feeling of unsteadiness. The pain passed as the infusion ended but he reported feeling a little "drunk" for an hour or two.  I suggested that we request the infusion over an hour the next time but he really liked getting out more quickly. We will see….

He is lucky to have a port so usually has no issues except a couple times when they couldn't get a blood return. 

Once a month will be such a nice change over every other week. At our local infusion center, he is the only one doing the double dose right now.  His primary oncologist at the Hillman Center in Pittsburgh, is moving everyone to the double dose as quickly as insurance approvals permit. 

I haven't gone to the once a month program yet. However, I am intersted and trying to get additional information on how this changes an individiuals reaction. So, on that front – thanks for the update.

On the having a hard time getting stuck. On my first round of Opdivo, I got stuck every 2 weeks for 35 treatments. At around treatment 20, the nurse started having problems sticking me. My veins had started to scar. We wound up usins some more "sensitive" areas and I didn't have any additional problems. After being off treatment for a year, the scaring (or whatever it was) has pretty much resolved and I am back to the normal arm sticks.

I'm certain that there is some skill involved in the poke, but I think some of it is just luck.  I've had very experienced-looking nurses, who have just had problems.  I passed out on the first infusion, as they were using a big needle and had to do a lot of "adjusting".  Didn't really hurt that much; I think it was an automatic reaction or something. What are you going to do?  Not like I'm going to bitch at the nurses; I couldn't do that job, period.   They all seem unbelievably sweet too.  Too sweet.  Must be something lurking there.

Regarding side affects, I'm still disappointed in the whole thing after the build up.  I generally come home and hit the stationary bike.  Try to hold off for running for a day or two.  I still think that this is a bad sign, because these expensive drugs seems to be going through me like water off a duck's back.  Can't think it's doing much.  Come on you big ipi wimp.  I'm ready for you. 

Hi Ted, for almost the whole first year of treatment, I would track down same nurse who used to be on the IV team at the hospital. Her name is Lise and she has a 100% track record of getting my vein on first try. Now, fast forward to summer vacation time and Lise decides to go on vacation, so I had to get over my fears and let others play with my veins. I strongly feel that there should be a big white board with all the nurse name listed and their weekly stats posted, so we could pick the nurse who is having the best week. Now, we would make this even more fun by putting some small wagers on the board. You might be wondering who has time to come up with such a crazy system, well after 108 treatments that have each required at least one poke+ blood work 66 times plus 40 picks for scans (brain Mri every 3month, chest abdomen every 3months, 6 weeks for first year of trial) for a grand total of 214, I have found a need to make the needle events more interesting.  Believe it or not, I used to have no fear of needles, now I have fear of new nurses who want to give my arms a try, like it is some bucket list check off for them. Oh, bye the way, my idea of giant white board was not adopted by the Ottawa General staff, even after many request. Best Wishes!!!Ed 

I just had my second double dose, number 44 so far. I really didn't have any different side effects than normal. I do have a port which I am glad because I am a very hard stick. They prescribe me numbing cream which I apply 30 minutes prior, sometimes I feel no stick at all. I got smart and started applying it before my labs, works great. I did have to have the end of port cleaned off last month, they went up my vein thru my groin and put a noose around the end of the tube and cleaned it off, works great again.