Bad news or 'routine'?: I wrote a few... - Advanced Prostate...

Advanced Prostate Cancer

22,364 members28,125 posts

Bad news or 'routine'?

Waubesa94 profile image
12 Replies

I wrote a few weeks back regarding my husband Mike: Gleason 9 with bone mets to right hip, left femur, (possibly) spinal region, and rib area. His MRI scans last month revealed the most serious mets were located in the femur and hip. I questioned the MO about chemo, but he said that spot radiation and prednisone/Zytiga combo would be more effective in regards to both the pain and 'knocking back the cancer.' Last week, Mike completed five separate treatments. This was going to be ten separate sessions, but the RO was able to program the Accuray machine so that he would have more concentrated radiation for just five sessions. Since completing these treatments he has had ongoing fatigue and pain -- he describes it as a 'sunburn on the inside.' Note: he has been taking the prednisone, still on Lupron, and will start the Zytiga tomorrow. However, the news about his appt with the MO earlier today-- I was not able to attend due to work -- was disappointing. His PSA is now 75 which means that it has tripled since this time approximately two months ago. According to different med sources I've researched, a spike in PSA is quite common following radiation therapy, but most of the articles did not specifically mention this spike occurring after the 'spot' radiation that Mike had. Additionally, there was no mention of such an extreme spike in PSA numbers. Can anyone provide some info regarding this issue or speak of their own experience with follow-up radiation? The MO's plan is thus: start on the Zytiga/pred combo, a Zometa infusion and Lupron shot in four weeks, and two months out if things haven't improved, they start chemo. At this point, I'm not depressed, but simply pissed off that things don't seem to be improving.

Written by
Waubesa94 profile image
Waubesa94
To view profiles and participate in discussions please or .
Read more about...
12 Replies
YostConner profile image
YostConner

I can speak to the feeling of internal sunburn. After I had spinal radiation in December (also five sessions), my entire abdomen felt like I had gone a round in the ring with a boxer. It began easing about a week after the final session. Best to both of you.

Waubesa94 profile image
Waubesa94 in reply toYostConner

Thanks, YostConner. Mike was told by the RO that it would take about a week, so I'm hoping that the pain and fatigue begin subsiding sometime this weekend. Did you experience a rise in PSA afterward? I was stunned when he told me the number and seriously hope that this is truly 'temporary' and that the Zytiga will work for him.

YostConner profile image
YostConner in reply toWaubesa94

I had a rising PSA anyway, so it’s hard to tell. I will finish Xofigo the first week of April and move to Xtandi in May. Hopefully then I’ll see my PSA fall.

DLWill profile image
DLWill in reply toYostConner

I have just started Xofigo. First of 6 treatments. What side effects should I be on the lookout for. So far long bone pain, nausea and extremely fatigued. Thanks.

Posting for my hubby

YostConner profile image
YostConner in reply toDLWill

Those are the majors. I’ve lost a lot of weight between nausea and loss of appetite.

DLWill profile image
DLWill in reply toYostConner

I have lost 8 lbs. After about 8 days post infusion, decreasing nausea and appetite returning. I am sure some of the weight loss was due to dehydration. Pushing the fluids. Thanks for the reply.

Tall_Allen profile image
Tall_Allen

Yes, radiation to large mets will release a lot of PSA ino systemic circulation. The half-life of the PSA is 2-3 days, so it should clear in 2-3 weeks. It is also normal for pain to spike (which is also probably why he is feeling fatigued), but within a week he should have less pain than before the treatments.

Ask your MO if he can have Celebrex with the Zometa. In the STAMPEDE trial the combination (but not either alone) increased survival by 22%. Send him this link:

ascopubs.org/doi/10.1200/JC...

Waubesa94 profile image
Waubesa94 in reply toTall_Allen

Thank-you for the info, TA, regarding Celebrex. ( I hear the name all the time on the TV ads, but did not know exactly what it was for until looking it up just now). Will definitely add this to my question list for next time.

Tall_Allen profile image
Tall_Allen in reply toWaubesa94

If he accepts email, it's definitely a good idea to forward it before your meeting so he has time to review it.

Tjc1 profile image
Tjc1

The zytiga should knock back his psa pretty quick. in 3 weeks on Xtandi my psa went down 7 points. You should expect the same. If not there is Xtandi. Im not sure or heard of pain from RT. I would give them a call and ask for sure.

Best of luck and keep us posted

Thomas

I am certainly not qualified to suggest treatment. I know onlyvwhat worked for me; however, we are all different.

Yet, I have difficulty in these words, "knocking back". With a Gleason 9, I would expect micro-metastasis. Metastatic cancer cells traveling within the lymphatic and vascular system.

They only method which I am aware of is chemotherapy to kill, not knock back. Assuming that the body is strong enough to withstand poison running through his veins or the cancer is to involved in it's destruction. Of course there are many more silver buckets available now then there were 14 years ago, so I may be out of date..,,,,

Very difficult decisions ahead. I suggest that your husband look toward research and teaching facilities at major centers working with medical schools; looking for the one Medical Oncologist currently involved in PCa research. Not a Medical Oncologist who treats all cancers. Of course distance and time play a factor in your husband' decision. He may already be with a great knowledgeable guy who is on top of his game.

Break60 profile image
Break60

I didn’t have any of those side effects after 3 fractions of SBRT but I only had it to a single 9mm met on femur so perhaps the volume of radiation makes the difference?

Bob

Not what you're looking for?

You may also like...

Newbie writing for hubby - more bad news.

I'm writing on behalf of my husband, Mike, who was diagnosed four years ago. His initial PSA was...
Waubesa94 profile image

Husband is fed up -- and so am I

To recap, my husband, Mike, aged 64, dx at age 60 with aggressive Gleason 9, stage 2a prostate...
Waubesa94 profile image

RO said 6-12 months

My dad finished radiation a couple days ago and his RO (I was not present) told him he probably has...
dunde8889 profile image

AST and ALT elevated

Hi, this is my first post, but I have been reading many posts on this site for the past few months...
Simonapo profile image

Update on husband's condition - hopeful?

First off, a huge 'Thank-you' to all who replied to my posting a few days ago. We met with a nurse...
Waubesa94 profile image

Moderation team

Bethishere profile image
BethishereAdministrator
Number6 profile image
Number6Administrator
Darryl profile image
DarrylPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.