First Lutetium Treatment

[RyderLake2]

Hello,

After many years on ADT and ARPI drugs, my prostate cancer is back. My medical oncologists have discovered several new lesions. I am now on the verge of starting Lutetium. The list of side effects provided to me is somewhat daunting. I have been told the risks and side effects include:

1). Temporary mild to moderate dry mouth.

2). Feeling weak or tired.

3). Loss of appetite.

4). Decrease in red blood cells, white blood cells and platelet counts.

I would like to hear from men who have gone through the Lutetium process what side effects have you experienced and do you have any helpful tips (i.e. sucking lozenges during the IV infusion). All comments from HU members are much appreciated.

[spencoid2]

I have only done the first treatment and will have the second tomorrow. My side effects were mild, mainly. Had no dry mouth. Definite fatigue for maybe 7 days but not the days I would have expected. I might have some moderate to severe radiation cystitis which presents similar to a UTI with pain etc but I might also have a UTI that was not successfully treated so difficult to know what is actually causing the urinary retention and pain. Might get some better ideas tomorrow when I see the "team". I have felt some relief from bone lesion pain and my PSA has held whereas it was doubling fast prior to Pluvicto

[Mcrpca]

My husband has had 3 infusions of Pluvicto. The first was followed by mild nausea. I notice his decrease in appetite, but he denies it. He’s not overly fatigued or weak. His CBC has definitely been affected but it doesn’t seem to be problematic. I was most concerned about dry mouth and altered taste but that hasn’t bothered him. He will have a PSMA PET scan at the end of the month which will hopefully show a decrease in metastatic disease. If not, I doubt they will continue treatment. My advice, exercise and laugh a lot. Good luck to you!

[Skifanatic]

I’ve completed six treatments. I’ve had very minimal to no side effects. One key, I think, is to drink A LOT of water (I drank about 100 ounces/day) starting the day before and for at least two days after. I kept exercising, which we know helps. Possible side effects have been dry mouth and eyes. Also, they will give you a card to identify you as a Lu-177 patient. Keep this with you if you fly as it helped me get through the airport in Krakow when I set off alarms indicating the possible presence of a nuclear weapon! Good luck, hope the treatments help.

[j-o-h-n in reply to Skifanatic]

Krack-OW, an appropriate name of a city checking for nuclear weapons....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 01/17/2024 7:28 PM EST

[Yank66]

My husband completed Pluvicto in August. Yes, he had fatigue, dry mouth, and decreased platelets and red blood cells. Take the recommendation on drinking water seriously-he has had some dental issues from the effects on his salivary glands. All side effects were manageable and most significantly, the treatment seems to have been effective and bought him more quality time. Our best to you and wishing you positive results.

[ttytle in reply to Yank66]

I was oligometastatic so expected increased SE as less cancer for the infusion to treat. Typically those with widespread metastasis have fewer SE. I had two einfusions. I had no fatigue or other serious SE, but I had mild nausea and dry mouth. The nausea lasted only a few days, but seven months later I am just now getting over the dry mouth. I had decrease in GFR (asymptomatic renal disfunction ) which since has returned to near normal. I was kept in isolation for 72 hours following each infusion, but was stoped at airport security for increased radioactivity and had to show my card given me at discharge. For me the infusions were shown to be quite effective based on PSMA scans and decreased PSA.

[skiingfiend]

Man, I don't have any advice for you, I'm not there yet, but I wish you all the best and hope you get a great response.

[LongTimeRunning]

I finished 5/6 treatments on the PSMAdditon trial.

- no issues with dry mouth

- never identified any specific weak or tiredness related to treatment

- no loss of appetite. In fact, very hungry day after treatment. The only thing I noticed was slight nausea the next morning. I couldn't tell if it was hunger pains or not, but after about 3rd treatment figured at least partially because of treatment. Went away quickly after eating,

- yes, decrease in RBC, WBC (especially neutrophils) and platelets. I didn't get the 6th treatment because neutrophils went down to 1.3. All these measures would take a hit after treatment and then slowly bounce back, except it seems after the 5th treatment when neutrophils are lagging. My baseline neutrophils weren't too high in the first place, but at least my platelets are coming back.

Meeting trial doc tomorrow to wrap up this stage of the trial.

[fishman357]

I have followed your honest and informative posts for some time and have connected with you as you had a very high PSA at dx as did I. You are also a fellow Canadian that has been fighting this horrible disease for quite some time. I'm sorry to hear you are now continuing your treatment journey with the start of Lutetium, but thankful there are still some arrows in your quiver going forward. I'm wondering how hard the access to this treatment was in BC and what the additional costs (if any) that was not covered by your provincial medical plan. I understand there is a private clinic in Burnaby that offers this treatment along with PSMA PET scans. Thank you for being an advocate and supporting local men and their families in all you do. I actually think we might have a friend in common that has also given his all in the support of men and their families in the Vancouver area. Not sure if you/I can DM but if so, please let me know how its done. Thank you

[ARIES29]

I had 2 sessions of LU-177 & had bad knee pain on the second treatment but the biggest let down was the PSA was back up to 19 after 2 years & $20K cost.

[fishman357]

I sent the below to you about a month ago, but as it turns out I had you confused with another gentleman who posts on this site and is from Vancouver. Not sure where you are from in Canada.

However, I have followed your honest and informative posts for some time and have connected with you personally as you had a very high PSA at dx as did I. You are also a fellow Canadian that has been fighting this horrible disease for quite some time. I'm sorry to hear you are now continuing your treatment journey with the start of Lutetium, but thankful there are still some arrows in your quiver going forward. I'm wondering how hard the access to this treatment was in BC and what the additional costs (if any) that was not covered by your provincial medical plan. I understand there is a private clinic in Burnaby that offers this treatment along with PSMA PET scans. Thank you for being an advocate and supporting local men and their families in all you do. I actually think we might have a friend in common that has also given his all in the support of men and their families in the Vancouver area. Not sure if you/I can DM but if so, please let me know how its done. Thank you

[RyderLake2 in reply to fishman357]

Hello,

I live in the Fraser Valley region of British Columbia. I have now gone through the first infusion of Lutetium at the BC Cancer Agency in Vancouver. No side effects...nothing! Worst part of it was sleeping downstairs, wearing Depends, and using a separate bathroom. Aside from being referred to as the "Downstairs Lab Rat" by family and friends there were some funny experiences. I never thought I would live long enough to have my wife buy a geiger counter and wand me every day to see how radioactive I was! If you are considering Lutetium my recommendation is go for it!

[fishman357]

So glad to hear you are tolerating this treatment and haven't lost your sense of humor in the process. Without the latter we are totally lost to this disease. Were you involved in a trial or did your MO source this treatment for you? Wondering about cost and if this is covered in BC under your provincial health plan? I live in Ontario and my MO has said Lu-177 should be available here in the next year. Although I'm not there yet, here's hoping for the next guy that needs it. I was dx at the VPC with Dr Gleave and have a very good friend in Don Konantz who spends the summers in our area. Do you happen to know Don? He has also done an amazing job at helping/supporting men and their families dealing with PC.

Thanks for your reply, I appreciate it and will continue to follow your amazing journey with hope and best wishes

[RyderLake2 in reply to fishman357]

Hello,

When I realized I hadn't answered your question, I sent a follow-up email which might have got lost. I am working with two computers right now transferring data from my old computer to my new one. Anyway here is your answer. Health Canada has approved Lutetium only after chemotherapy. I have never had chemotherapy. Remember, just because Health Canada has approved a drug does not necessarily mean the provincial health system is willing to pay for it. I was investigating going to Germany or elsewhere for Theranostic treatment when my Abbotsford medical oncologist (BTW a great doctor) put my name forward for a clinical trial at the BC Cancer Agency (BCCA) in Vancouver. It is called SPLASH and is investigating Lutetium pre-chemotherapy. Since this trial gives me more options down the road I volunteered and was fortunate enough to be selected. Only ten men were invited from BC and I was lucky enough to be the tenth and last one selected. When I started the trial in September 2022 I was placed on Arm B (Standard of Care). The BCCA team put me on Zytiga (abiraterone) plus Prednisone. I had been on Xtandi for the previous five years so Zytiga was a new drug for me. That gave me another sixteen months. The clinical trial allows for a crossover so because of a rising PSA I was switched to Arm A (Lutetium). Other than monthly trips into Vancouver, now every two weeks I haven't paid for anything. The trial sponsors Point BioPharma have even paid for a hotel, parking, and meals on occasion. Sorry I don't know Don Konantz. I do know Dr. Martin Gleave and many of the folks at the Vancouver Prostate Centre. Hope that helps!

[fishman357 in reply to RyderLake2]

I am curious, however, remain hopeful that your LU treatments are working well and you are not experiencing any adverse SE from it. Also hoping for a decline in your PSA if that is what's judging this new treatment to be successful for you or not. There doesn't seem a lot of men from Canada on this site and on this treatment (seems to be more from the US), so I am very interested in your current journey. In June I will be 3 years into this with a starting PSA of 900+ and no symptoms other than peeing a lot at night. I am currently undetectable with Lupron and Appalutimide as my 2 treatments. This is why I am following you closely as my journey seems to be a bit similar to yours. My MO has said Chemo will probably be the next step if and when PSA starts to go up or there is radiographic progression. I should also mention I am still in the sensitive stage of this disease. I have read some wonderful posts on this forum about the success of LU in some men which also offers some degree of hope for me and others in the future. Its weird, but, without knowing you, I think of you often and how your making out in your journey. You've done so well and offered so much good advise to many on this forum since I joined, and for that I thank you very much. Look forward to many more positive posts from you in the future

Take good care,

[positive-thinking in reply to fishman357]

We are from Canada , we live in the Yukon but all the treatments , tests , oncologists, scans are in Vancouver B.C . Yukon follows everything that B.C does ( including listing medications with our province ) . My husband is almost done last chemo soon. Hope you are doing well

[RyderLake2 in reply to positive-thinking]

Thank you,

We are currently in Vancouver staying with our daughter’s family. Tomorrow morning (Tuesday) we go to the B.C. Cancer Agency for my second infusion of the radiopharmaceutical Lutetium. So far, touch wood, no adverse effects. I have been to the Yukon once and on another occasion to Inuvik in January. Impressed both times. Only hardy people choose to live in Canada’s north.

[positive-thinking in reply to RyderLake2]

Good luck to you with your treatment, you sound like an amazing person and I wish you the very best. You are lucky to have a Daughter that lives close to B.C cancer, it is a long ways from here and a lonely hotel room for my husband when he has to go there for medical treatments. We do both love living in the north and we spend a great deal of time in Alaska too. Our goal since finding out his diagnosis was to get through the chemo and he has just enough time to get strong enough to go on our annual Salmon fish in Alaska we enjoy so much . Love to you from the far far north .

[RyderLake2]

Hello,

Thanks for responding. Just before my first Lutetium infusion in mid-February my PSA was steadily rising. In January my PSA was 3.8 and there is absolutely no doubt in my mind that had I not been allowed to crossover into the Lutetium arm of the SPLASH trial in February my PSA would be over 4.0. My first Lutetium infusion was Tuesday, February 13th. I had no side effects whatsoever. After the infusion, my PSA went down to 1.3 on February 20th, 0.30 on February 29th, 0.07 on March 14th and 0.037 on March 19th. In my humble opinion, PSA tests are helpful but the true test is imaging. I am having a nuclear bone scan and a CT scan on April 4th and my second Lutetium infusion is the following week on April 9th. So we shall see but so far so good. 😊

I live in the Upper Fraser Valley of British Columbia over 100 kms from Vancouver. We are not exactly next door to the BC Cancer Agency but we do have a place to stay whenever we have early morning appointments. Sometimes the highway into Vancouver is a parking lot! Hope that helps! Good luck in your continuing battle with this disease.