First Pluvicto Infusion Soon
My husband will be getting his first Pluvicto infusion in October. I am trying to obtain as much information as possible so I am able to help him along this long journey.
I appreciate reading the comments about the radiation exposure. Needless to say my anxiety level is at the top of the scale. My main concern right now, though, is how to carry on with our lives between the fusions, knowing that thebimmunity system will be low because of the treatment. The pandemic forced me into more self isolation than I needed and I want to have us live our life between infusions rather than to take extreme precautions because of the low immunity. So, I am interested in hearing how you handle those weeks. I know everyone’s experience is different, but if he feels well and lab tests are ok, what kind of “normalcy” can we expect? What do you do between infusion appointments “
Interested in more discussions like this? Go to the Prostate Cancer Support Group.
Sorry about the typo in my first post. It could not be edited…..I meant to say low immune system!
I didn't have radiation but did go through chemo treatment. I'm not sure how to answer your question. For me personally, (not the sharpest tool here) I just went about my business. I work at a health care place, I still sanitize the areas and rooms when needed. I didn't take extra precautions and truth be told,, I always said the chemo would take care of any thing out there. Again, maybe not the smartest choice but that's me. I do wish you and your hubby the best on his journey. Someone else will post and maybe offer better choices. Best to all.
Steve, I certainly appreciate your response. I am new to this forum, but I think you may have shared good thoughts and opinions with others!!
One nurse I spoke with did not seemed concerned about activities beyond the 7 day period and a second nurse told me to be very cautious (which I will be) but to limit what we do. I am an “over thinker” so don’t know what to make of that, Obviously, sitting around until May will not be good for our mental health. I know we will figure something out…..I just want to do the right things!
I know a lot of people that have had Pluvicto and the results are all over the place. It works well with 1/3 of people, mediocre with 1/3 of the people and not at all with 1/3 of the people.
Most people just have a few problems with it and can go through the full six sessions. Some people can only take one or two sessions without serious side effects and they either have to stop or have a reduced amount of Pluvicto combined with a change to the schedule to match what the person can handle.
One thing to know is that it does not work for everyone and that with people with certain genetic problems It is very ineffective. You should have both genetic testing and somatic testing done to see if there are genetic issues you have that will cause issues. Somatic testing is done on the blood or tissue, Genetic (hereditary) testing is done through a spit tube (or blood) and there’s even a way to get it done free but it does take about three weeks to get the results. If you have BRCA2 it tends to work a little better. If you have the genetic problem of RB1 or PTEN it probably will not work at all. That’s why you want to get genetic testing before doing it.
My husband has had both chemotherapy with docetaxel and very recent therapy with Pluvicto.
Pluvicto infusions, their effect on the immune system, and their side effects, are NOT like chemo infusions. The infusion itself doesn't take very long, around an hour. The side effects are much milder than those caused by chemotherapy. Most patients experience a dry mouth and dry eyes, and some have gastrointestinal side effects such as constipation or mild nausea. These are easily treated with Miralax and Zofran, respectively. Food doesn't taste terrible or metallic or chemical like after chemotherapy; it just isn't very appealing, and the patient may have a reduced appetite. Pluvicto doesn't have the same effect on the immune system as chemotherapy either. Lab tests are used to monitor whether the infusions are causing trouble with red blood cells, liver function, kidney function, etc. and the dose or interval of the infusions can be adjusted if necessary. My husband had lab tests a few hours to the day before each infusion, and then three weeks after each infusion, which is midway between one infusion and the next. He just finished his sixth and final Pluvicto infusion and never had lab results which caused a modification or delay in his treatments. Finally, please don't worry too much about radiation danger. It is preferable to sleep in separate beds and use separate bathrooms if possible for a few days, and to avoid having young children or pregnant people near the patient for a week or so. But there is no problem riding home together in a car after treatment, or flying home after treatment, or staying in a hotel after treatment. Your nuclear medicine team will have specific instructions for you to follow to minimize radiation exposure to others. Please don't think you need to buy a Geiger counter or isolate the patient for a week, as some men have argued on this forum. Do a search on the Prostate Cancer support group of Mayo Connect for Pluvicto entries, and pay special attention to the helpful entries by Colleen, who moderates the group for Mayo Clinic. She has laid out the current advice on radiation safely post-Pluvicto.
Please feel free to ask any other questions you have. Good luck to you both, and keep us posted.
Thank you, Jeff. The radiation oncologist did mention the 1/3, 1\3, 1/3 statistics. My husband had the genetic testing but not the BRCA2. I will ask about that again, though.
I did ask about somatic sequencing and he said that might be done later. Maybe that is the same as BRCA2. I will ask.
BRCA2 it’s just one of About 30 different problems they look for when you do genetic testing.
it’s too bad the doctor doesn’t realize that somatic testing is necessary to find out if you have the two genetic issues I mentioned (RB1 and PTEN that caused Pluvicto not to work.
Taking the somatic test after the fact is too late.
While your hereditary, genetic test doesn’t show anything a somatic test can show different results.
Right there with you! My husband goes for his consultation at the end of October and I am doing the same thing. ADT and lupron, 6 chemotherapy treatments and his body is wiped out!!! He is 72 and was a young 72. Very active and strong. Now his legs have lost a lot of muscle mass. Had several bad side effects from chemo. So I am following you and praying this works! Good luck and have prayers for you and yours your husband!
My husband is on lupron and zytiga. He had Chemo a few years ago and, with the exception of developing neutropenia, had no other side effects. This reminds me to ask about the neutropenia risk with Pluvicto. I have a list of questions to ask the medical oncologist that I gathered from the posts I received. At this time, he is in Spain, attending the EMSO conference. Maybe he will have updated information on Pluvicto to share.
Following each other might help give both of us the support we need.
The best to you and your husband during this next journey!
Thank you for your thoughtful and reassuring comments. The protocol your husband is following is similiar to the one we have….labs prior to each infusion, 2 scans after the first infusion, and a 3 week office visit after each infusion with the radiation oncologist.
I have a lot of concerns about the impact of the radiation, but, everything I was told by the medical folks here mimic what you are saying! Coincidentally, I had read Colleen’s post the other day. She reaffirmed all of this. After reading about folks using the Geiger counter, I asked about this and I was told, as Colleen had noted, that this can cause a lot more anxiety for folks who use them. Since my anxiety is already high, I will not be purchasing one,
I feel fortunate to have found this group and will reach out here, if and when, I need to hear from folks who knowledgeable and understanding!