Has anyone experienced very low platelet counts with xofigo

[oilcan4]

I have many bone mets on my ribs and spine. Taxotere chemo failed. Now just finished my fourth injection of Xofigo. My platelet count is down to 53,000. Has anyone had any negative experiences with xofigo and low platelet counts due to bone marrow suppression. My white and red blood cell counts also low. After my 3rd. injection my platelet count was 94,000 and went to 53,000 at 4th injection. Iam afraid after 5th injection it could approach zero

[ctarleton]

Anecdotal experiences from individuals can provide some emotional support. If you may not have seen them, you might also be interested in the collective results of the approx. 600 men who were involved in the original clinical trial study for Xofigo. Note especially Sections 5 and 6 of the Highlights of the Prescribing Information and the parts involving blood lab results. Look for Thrombocytopenia in regards to platelet counts.

accessdata.fda.gov/drugsatf...

[LearnAll]

Bone marrow suppression leading to serious reduction in platelet counts, called thrombocytopenia occurs in 2 to 3 % men who are on Xofigo.Once platelet counts drop below 50,000 ,the risk of bleeding ,bruising and blood loss after any injury...goes up significantly.

If Platelet count falls below 20,000, the risk of spontaneous bleeding skyrockets and at time

can cause death due to internal organ bleeding.

If I was in your situation, I will withdraw consent for any further Xofigo and do things to bring platelets back up...and then may consider further Xofigo ,if needed.

The platelets live only 7 days and can be produced fast. Some well known ways to increase platelets are (1) Drinking Papaya leaf Extract for 5 days. (2) Prednisone . Discuss this with your treating doctor.

[Danielgreer]

Hey oilcan,My platelets went from 273k right before starting Xofigo to 211k after my second injection. I’m due to get my next blood panel on Thursday. What was your count before you had the first shot? Are you having fatigue? I’ve heard that some guys don’t get side effects, but I get fatigue and it is highest for about ten days after the injection but I also notice the fatigue after ten days has been increasing after each injection.

[oilcan4 in reply to Danielgreer]

before my first shot was 123 to 102 to 94 to 53 after 4th shot. Have had fatigue and shortness of breath. Also more pronounced bone pain which they tell me show it s working. My white blood cells are 2.4. half of what they should be but my Alkaline phosphatase is 64 which is a good sign that it is working on the bones. Afraid after this 5th shot my platelets will go extremely low. They say a platelet count of 50 is their cutoff for getting the xofigo injection. Iam right at that mark. I hope you have better results.

[Brackenridge in reply to oilcan4]

How high had your Alkaline phosphatase gone before xofigo?

[oilcan4 in reply to Brackenridge]

177 to now 64

[Brackenridge in reply to oilcan4]

That IS excellent. Thank you for sharing.

[JLS1]

This is exactly what happened with my husband after his 4th injection. I don't want to scare you, but please do NOT get that 5th injection, at least not until you know your platelets and RBCs are able to recover, and that may take a few extra weeks! I wrote several posts about this here. Papaya leaf might be able to help your platelet counts. I bought the tea for my husband. Some people here have taken the extract. Bayer really needs to clarify this on their brochure so patients are fully aware of the risks, which are much higher than currently stated!!:

healthunlocked.com/advanced...

[Patrick-Turner]

OK, so after 3rd dose Ra223, platelets were 94,000, and after 4th dose 53,000, so a drop of 41,000, or -43%. So if there was another 5th dose, drop of 43% leaves you at 30,000,and after 6th dose another drop of 43% leaves you at 17,000. But this is assuming your body acts fairly linearly, and just how the myriad of things in anyone body react is often far from linear and they don't follow any easy to work out formulas.

Indeed your blood figure of 53,000 may go to zero with one more dose of Ra223.

What was platelet figure before you began Ra223? Was a blood test taken between each dose of Ra223? Does your doctor supervising Ra223 understand the blood numbers?

What was your age and general health status before you began Ra223? All these factors should be taken into account.

I am 73, and due to begin Ra223 soon. Doc is happy with all my blood numbers, and I am a "Pinnup Boi" at local hospital because I am healthiest stage 4 Pca patient they have ever seen. I arrive at hospital to talk to onco by bicycle, and cycle 200km+ a week, and I have no "co-morbidities". I've fought with Pca since Gleason 9 inoperable in 2009, with low Psa 6.

I have had ADT, EBRT, more ADT, IMRT, ADT, Cosadex, Zytiga, chemo, LU177, and all did not work well enough to give anything like remission.

My docs say I have very good bloods, so one is willing to give me Ra223 starting soon, and Psa is about 70 now, rising fast. Its the highest its ever been.

Yet I cycled 72km today and I felt just fine and I have no Pca symptoms.

Now I could have all some problems with effects of Ra223 on marrow. Well, a number of things can go wrong no matter how healthy a man is and how sick he is at the same time, and its crunch time for me because whatever treatment I have now might be the last that can be done, and getting 6 doses Ra223 may be impossible, and I risk getting very sick, but sooner or later I may suffer from :-

1. The combination of treatment side effects,

2. My tendency to try to stay fit,

3. The Pca capability to mutate a bit to avoid the whatever magic potion the next doctor tries to give me.

If I worry what Ra223 might do before I try it, I may miss out on getting a fix that might last years. So better I proceed, like I did with everything else. If I can only have 4 doses Ra223, then so be it. Possibly, if blood tests indicate degraded health, OK, we have a break, and maybe I recover to better health, and if there are still bone mets there, I might have more Ra223.

I have read many accounts here of men telling us all how well their Ra223 has gone, and how they went away on a nice long holiday with their lovely wife, feeling well after Ra223.

Men will have a differing response to Ra223 and some may do well on 3 doses, and others may need 9 doses, and how do the experts calibrate the dose levels? Its neither simple or easy. Understanding just how Ra223 works is a big book of hard to read medical jargon which I for one don't fully understand, and nor does my oncologist because he's an oncologist, not trained in nuclear medicine. You can't force the world of nuclear medicine to work better for you than it is capable of doing.

There may well be ways to boost your bone marrow function, and when I had chemo in 2018 I had Neulasta injections within 24 hours of each chemo dose to boost my white cells. This worked very well. But nobody bothered with inject me after first chemo dose, and white cells went low, and I had to get to hospital asap when I had a fever start, for some intensive care.

But for next 4 chemo doses I was fine with Neulasta injection.

It is sometimes difficult to weigh up all the factors in your own situation. My neighbor of 2 years ago had got lung cancer 2 years before, and he fought bravely, and docs did some magic things but his cancer won. He got to such a stage at 65 yo that he'd had so much agony and treatments that eventually did not work that he just opted to quit, and he did at home with family around and a white palliative care van arrived every other day for pain relief. I am going to exit like this, although there won't be a family, because I didn't get around to having kids. It will have to do, but now, I still might score a few more years alive, to enjoy friends, and what is done to keep me alive, and then what is done to stop the agony, I've had to come to terms with fact I will not live as long as my mum who died at 98. But I've outlived a dad and a sister by 13 years so far.

One general practice local lady doctor said in 2008, "You can't live forever".

I could have fallen off my bicycle countless times, or had numerous accidents when I worked for 30 years in building construction. I know not my future, so I need ways of preventing myself worrying about it. Many may drink, overeat, but I just became an athlete, it calms me to spend 3 hours our cycling around, and I suggest finding something to do is best therapy.

All the best pal,

Patrick Turner.

[j-o-h-n]

Greetings OC4

Please tell us your bio. Age? Location? When diagnosed? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?

All info is voluntary, but it helps us help you and helps us too. When you respond, copy and paste it in your home page for your use and for other members’ reference.

THANK YOU AND KEEP POSTING!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 02/03/2021 7:04 PM EST