Xofigo Side Effects . . . Blood counts and diarrhea???

quincy17...I started a thread Xofigo when husband started on it in August 2014....."Starting Xofigo/Radium223".
I have posted comments every time he recieved an injection (four). He hasn't been able to get the fifth because his platelet count is 21,000 and it has to be 50,000 to continue. His white and red blood cells have been compromised as well. Had a blood transfusion last week for two units. Husband has not had any side effects, except the usual fatigue. However, the Xofigo does work on the bone marrow which is what creates the platelets and since husband has been on so many different treatments/therapies his bone marrow is "tired" and not working at full function. Plus the cancer is working on the bone marrow as well......double edged sword......
Husband's PSA stated out at 136 and went down to 62 but has slowly risen again, don't know what it is now but last record it was 112.

Check out that thread and see what I have posted. Also you can see signature and that will give you some idea of our journey.....however, I have run out of space and can't continue updating the PSA results on the signature line....

Peace, Love and Hope......

sal

quincy17...like to give answers if I am knowledgeable enough or just reply to a question. It help's the other party to know that people are interested and ready to be supportive.....sometimes that's all that they want...support, or a a platform to talk and vent if necessary!

Good Luck to you!

Peace Love and HOPE

sal

Hi Beth & Gary,
Wow, you two have really been through the ringer, my sympathies are most definitely with you both. Thank you for the nausea info, while that was not even mentioned, until I brought it up, at my appt. with my new RO. Fortunately, I do have a strong stomach with no current or past nausea troubles. This March marks the 8th year since Dx and I've had no marked SEs from the 4 month Lupron injections except for the breast growth, terrible full body pain, genital shrinkage, and accelerated ortho arthritis. Oh yes, big issue with fatigue as well. GI problems have been nil but there is always that chance. I will make sure to get an anti emetic Rx while I'm doing this.

On the Provenge issue I had Zero luck with it. In fact, my once stable PSA of 3-4 has increased since conclusion of the Provenge treatment to a current 114. My MO was aware of the Hep-C when she advised Provenge so I guess that it is not a deal breaker. The fact that even with the rise in PSA over the past 15 months I have not developed any new Mets may speak to the Provenge being a success. Neither I nor my MO are sure so I will hold off on any endorsement of the procedure.

The best of luck and the least of pain . . . Q

Hi to you both,
Thnks for the support you two, it helps a lot. It looks like YALL have been going down the same path . . . keep it up with joy in your heart and all is possible, like you say-- Celebrate life! . . . Q

Hi Sue,
Your reply is greatly appreciated, I know how our lives can get pretty insular when fighting this beast and for you to take the time to write such an info packed reply is fantastic. So, in Daves case, diarrhea is definitely a big SE. Your suggestion of gator aid is really helpful as I had not considered the loss of electrolytes. Also, the liquid meal supplement idea is very much needed as my diet is terrible.

I am not in much pain but, then again, I am also on a rather high Rx of OxyContin and Oxycodone and my RO suspects that that is masking a lot of my pain. I know this to be true as when I am late on dosage my feet and knees are in agony . . . Scream out loud type sudden pain flares.

Daves blood count is encouraging as that is one of my bugbears. Having Hep-C going in to this treatment is a challenge to my platelets so you have given me some hope there. I agree that the PSA rise is alarming, my prayers are with you that it will improve. I am also on a PSA rise though nothing near Dave's level. I get monthly PSA tests for my MO so we have been keeping a close eye on that parameter.

Please, if you would, keep me posted on the Scan results. My mets, at least those that have been found, are in my ribs and they are sore . . . That might be something for you folks to keep an eye on. Once again, thank you . . . Q

Hello Sue,
Sorry to hear the bad news but the PSA drop is heartening. My RO had warned me of possible blood count drops and this will reinforce my watchfulness. I can't tell you how much I appreciate you taking time out to write to me, Dave is blessed to have a wife like you. I hope whichever parameter on his blood count comes back into line.

Fortunately, I guess, the Lupron and Casodex have helped me gain an extra 60 lbs so maybe that will be a buffer if and when I face the weight loss. I say fortunate because, before this was Dxed 8 years ago I was pretty thin, at 145 and 6'. So far my scans have been clear which is odd as the PSA rises show an active Cancer growth. I, too, am on a lot of pain meds as the Lupron has really taken it out on me pain wise. I was on Fentora but HUMANA cut me off and I am now fighting for a prior approval for OxyContin.

All my best hopes are sent to the both of you and thank you once again for staying in touch. My eaddress is in my profile if you feel that you have something that you really want to make sure I get . . . Q

Hi Jim,
Thanks for the reply. Yeah man, you got some great results there,that really picked up my spirits. While my case was too far progressed for an RP, I still have no noticeable mets after 8 years. My MO and I decided on this treatment as preventative rather than palliative so we are expecting similar results. I will still be on Lupron afterwards but am looking forward to giving it some help in the battle. Congrats on your remission . . . Q

Sounds like you got good results on the Xofigo and Zytiga. I can't take thezytiga due to drug drug interaction but will get off the Cymbalta and Abilify if necessary. I'll be getting regular before treatment BCs so that will definitely be monitored. My MO is against chemo until all other avenues have been tried so I don't know that much about it as of yet. Best of luck . . . Q

Good luck folks.
I'm sure at some point I will also be on these meds.

Oncas -- it is nice to read about a definite success on Xofigo. I have read a lot of good studies/reports about it being very effective, but no so many good reports here on HW, where the rubber meets the road!

Also, regarding Provenge, I have heard talks about it at the PRCI annual conference. They make the point that success of Provenge is very often not reflected in PSA results. That's one of the problems. It is hard to gauge success, but the endpoints such as OS (Overall Survival) do show success. Also, imaging for those who have METS and are on Provenge often does show success.

Mel

Post Edited (compiler) : 2/7/2015 11:15:14 AM (GMT-7)

Mel and Oncas,
I agree with your statements about Provenge even though my PSA does not reflect any benefits. I feel that the benefits are to be seen in both my extended length of longevity and lack of mets. Being a G-9 for 8 years bears this out. I think that the individualized approach of immunotherapy is the wave of future treatments, possibly into chemo.

Casper, was your chemo docetaxel ? I'm heartened to hear such positive results. I'm not too surprised at the BCs. How low are your WBCs? Thank you all for your great replies, the info is very useful and YALL have put it in words and ways that even I can grasp which is appreciated . . . Q

Thanks for the reply Sal,
Pleas let us know about the Platelet transplant, I was not aware that that was a possibility. Since I also have Hep-C, platelets will most like.y be an issue. I fought with the fatigue for the first six years but after the Provenge I have pretty much given up on my gardening, etc. That treatment really took it out on me. It is heartening to hear that Ted had no SEs, I have my fingers crossed. Our T's&Ps to you both . . . Q

Quincy, check your ignore list in your profile. You might have inadvertently hit it. I see both her posts.

Cheers, Doug