- April 25, 2018 at 2:39 pm
I had my first once a month dose of Nivo with the larger dose. No new side effects, just immediately noticed that my usual side effects came on faster and were amplified. The body aches and pain were pretty nasty and the fatigue….ugh. I have been skipping work the day of then going back to work the day after. It was very hard working yesterday feeling like I had been run over by a bull dozer. But better today, now I feel like a bob cat ran over me instead. Looking forward to just once a month though….another subject. Has anyone suddenly gone from being an easy stick to having difficulties? I have always been an easy stick/blood draw, had to get stuck 5 times on Monday. YUCKY!
Fight on everybody,
- April 25, 2018 at 5:11 pm
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.
- April 25, 2018 at 5:53 pm
The funny thing is I always use the same lab and have had the same infusion nurse. Both of them are very experienced and they actually seemed to hit the vein and it didn't want to give blood. I always hydrate extra before my infusions because I hate getting stuck. I have big beautiful veins that everyone always does well with so that's what was really weird. This has never happened. Thanks for your advice….for those that don't know better, hyrdration sure is important for labs and for infusions and staying well during treatment! blessings to you and your hubby!
- April 25, 2018 at 6:58 pm
You won the prize: tough stick and tough side effects. I hope the bobcat didn't have sharp claws. Ha. And may it be better next go round, both in side effects and veins. My one measly vein departs in a snit if touched wrong, so my husband says better him than me. I sure hope it goes much better for you next time.
- April 25, 2018 at 6:46 pm
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.
- April 25, 2018 at 11:03 pm
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.
- April 26, 2018 at 4:18 am
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.
- April 26, 2018 at 1:51 pm
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
- April 26, 2018 at 4:44 pm
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.
I go in the morning for my first double dose. This will be #7. I have been on the every 2 week rotation. Still very nervous about tomorrow. I have just had the fatigue for the first 24 hrs or so after my ifusion, wondering how things will go now! Crossing my fingers and hoping for the best.
- April 27, 2018 at 3:17 am
Yes, absolutely. I am Stage IIIC. I just did my double dose of nivo this last friday, it was #7. It basically knocked me on my butt for about the first 24 hours. Very winded feeling. I finally started feeling myself late Saturday evening….have you done the double dose?
- April 30, 2018 at 12:58 am
- April 30, 2018 at 9:36 am
Hi jjk17, I think this new guy majaops was asking hukill above you who is at treatment # 44 what his situation is. It is sometimes hard to know who is responding to you the way the system is set up. I love it when anon's answer anon's, it can get really hard to follow then, I would like to give the anon's #'s in those special situations.
After 26 treatments of Opdivo done 2 times a month, I was switched to 1 a month treatments at a higher concentration. I’ve had a tremendous response to my treatment. Was diagnosed stage 4 with disease that had spred to my lungs, liver, lumbar spine, lymph nodes, both hips, bony pelvis, soft pelvis, psoas and thigh muscles. After 15 months of treatments almost all of my tumors are completely gone and the few remaining are greatly reduced in size and exhibit extremely low activity. I was very fortunate and experienced minimal side effects from my treatment. Basically Flu Like. Fatigue, joint and muscle aches which lasted up to 7 days. I’ve only had 2 stronger treatments, but it seems like my symptoms have lasted up tp 14 days now. Not enough to knock me down, but strong enough
- August 12, 2019 at 5:29 pm
to know it. A few more treatments will give me a better idea. At any rate, I only wish that every patient was fortunate to have the response and little side effects I’ve experienced. Those going thru this journey have hope. There are positive results out here.
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