My dad’s appt yesterday was very confusing to me. He had his 4 week appointment since being switched to Xtandi from Zytiga.
Zytiga failed after 7 months and now onto Xtandi. We still do not have the PSA results however we did get his hemoglobin back and his alkaline Phos. His hemoglobin went from a 11.8 to 10.8 in 4wks and has his oncologist concerned, yet his Alk phos improved from 351 to 293. Isn’t that a good sign? I’m confused because the Dr told my dad to start thinking about taxotere. He seemed concerned and we haven’t even gotten the PSA back. Can anyone offer any feedback on this?
Also I wanted to thank everyone because I asked for him to be put on Metformin and he wrote a Rx. Thank you! I would never have known about Metformin if it wasn’t for this group.
On a side note...why aren’t they prescribing it if they know it could help?
Xtandi usually does not work for long after Zytiga has failed. Taxotere is particularly useful between Zytiga and Xtandi because sometimes it has been found to restore sensitivity to them.
"On a side note...why aren’t they prescribing it [metformin] if they know it could help?" Because in spite of the misinformation you may have picked up on this site, it is not at all known that it could help.
Thank you for your reply. Is Metformin ok for him to take? I don’t want to add anything that could possibly cause more harm than good.
Also.......my dad is a young 76 but he told me today he thinks chemo would kill him. He’s very scared of it. Thoughts on taxotere and his age? Lastly, is his hemoglobin lowering a sign of cancer growing? It’s confusing to me since his Alk phos is coming down.
"he thinks chemo would kill him. " That is a common reaction to the word "chemo." It is based on his experience with family and friends and movies with the kinds of chemo (often cocktails) given for other cancers and the side effects of those. The side effects of docetaxel are worse the longer he waits to take it. If he takes it while he is still relatively young and healthy, it will extend survival longer and it is likely to have fewer, lower degree side effects. It is tragic that so many PC patients put off docetaxel until it does little good and a lot of harm.
His hemoglobin is low even for a man his age. It may be because of cancer in his bone marrow (in which case WBC and platelets might also be low), or because of long-term androgen deprivation. His oncologist may want to put him on a blood stimulant before chemo.
Metformin is usually safe to take. My personal feeling is "why not?"
You are such a wealth of information. Thank you so much for your response. He has only been on ADT for 8 months. I pray that his hemoglobin isn’t low because of cancer in the bone marrow. He has no pain at all and the rest of his bloodwork came back fine except for the Alk phos coming down from last month.
Tell your dad not to be afraid of chemo. I had some 40 bone tumours when I stated 10 cycles over 8 months. Nov '15 to May '16 inclusive. 2 months after finishing my bone scans came back negative and the chemo had been a piece of cake. I am also diabetic and on Metformin since 1990. Still on it for cancer relief does it work..no one knows. But it doesn't harm and it's still useful for my diabetes. I am now 72 and bones being attacked again, some tumour locations as before, ouch, but most newbies. Pain for first time. Looking for jump into new chemo. Be not afraid, make you dad positive.
I’m 78 years young. Do. Feb/18 Radiation to Four Lower vertebrate, left upper pelvic area and a rib. Been on ZOLADEX for three injections to date. Was offered Hormone (Arberitone) treatment or Chemo to go with first. My understanding was that hormone treatment keeps the cancer cells p caked away in the Prostate whereas Chemo killsthe cells wherever they are in the body. No brainer, kill the cancer cells first then ensure nothing escapes the Prostate. My Sixth Docetaxel IV is on Sept 12 . Chemo #1 through #3 were no problem- tingling in the tongue, a bit of neuropathy in the soles of the feet, dizziness and constipation were the main problems. Constipation was dealt with by a glass of Restorelax and glass of prune juice daily. The dizziness I learned to live with. Chemo #4 and #5 increased the dizziness, so they cut the Docetaxel from 146 down to 128. Still had the dizziness, but it gradually reduced after two weeks following each iv. Honestly, there is nothing to fear about Chemotherapy from my experience.
He went straight from zytiga to xtandi without a day off of hormone therapy. Do you know what his Hemoglobin dropping means? I know it means he’s anemic but does it mean the cancer is causing this?
Avoid the "how to raise how to raise hemoglobin" sites - they will mostly list iron-rich foods, & iron deficiency is not the issue (although you can certainly check his iron status to make sure that it is not a contributing factor). Many people & doctors throw iron at the problem anyway, but the last thing he needs now is an iron overload.
Exercise might help increase red blood cell volume.
I too suffer from anemia and low hemoglobin, my onco said it was likely due to ADT as well as the chemo (taxotere) that I had back in 2015 and its subsequent effect on my bone marrow. He had me get a colonoscopy in order to rule out any other issues that could cause bleeding which could lead to low hemoglobin and RBC. Once this was ruled out he started me on daily iron supplements (Ferro-Sequels) which has helped, after 2-3 months my bloodwork is in the low normal range. Lots of vitamin C helps with iron absorption and avoid taking any antacids for a couple of hours after taking iron supplement - it could affect absorption.
I've been taking Metformin per Dr. Myers since my DX, back in 2014, my current PCA specialist onco Dr. Sartor agrees with its use as do my local oncos past and present.
I would view the drop in Alka Phos as a positive development, good luck and hang in there!
It was down to 11.2 just after chemo in early 2016. Since then it gradually climbed to just barely normal but would drop below normal some months. The iron tabs that I've been taking the last couple of months seemed to help get it above normal.
Keep in mind that Xtandi can take 4-6 months to see the full effect on PSA levels, so be patient, hopefully your doctor is aware of this too. Some docs can give up on it too soon. I take Xtandi in the evening since its main SE is fatigue.
I got about 18 months from Zytiga and then about 12 months from Xtandi (please see bio for complete treatment history).
After recent chemo with Docetaxel/Carboplatin, rechallenge with Xtandi bought me another 5 months.
As others have said, chemo is not as bad as your Dad fears. With drugs like Aloxi to minimize nausea and Neulasta to boost white blood cells, the process is much better. I am 71 and completed 6 cycles in January 2018 and it worked--brought PSA down from 10.8 to .4 and liver lesions less pronounced!
Thank you so much Mark. May you have continued success with treatments.
The oncologist just called and my dad’s PSA went from 3.5 to 10 in 4wks. I am devastated. I was so hopeful that Xtandi would give him more time.
He’s only been on xtandi for 4wks, he was previously on Zytiga. Is there any way at all this could be a flare? He didn’t have a flare with zytiga. His PSA fell rapidly.
According to our MO, Zytiga and Xtandi show their real effectiveness after 2-3 months and PSA can bounce up and down the first months (it happened when my father started Zytiga), if it goes up and down but remains within an acceptable range it's all good, you have to be concerned if it keeps going up month after month. As Tall Allen suggested it's also wise to ask to have chemo between or after the switch of these drugs, as it can restore sensitivity to them and make them effective again.
Also if he didn't do it yet, ask your MO for the Provenge immunotherapy (Sipuleucel T) when combined with Xtandi it might give a huge immune boost in mcrpc.
Radium223 also doesn't impact PSA and yet it's very effective on bone mets!
PSA isn't the only marker to consider, there's also CT scans and how the patient feels.
Ask for a second opinion please, when combined with Xtandi, Provenge can greatly boost the effectiveness of the drug, and can give several months of survival advantage even when used by itself.
A few users here are following this protocol and having good results with it.
I agree Dalph87, I’m trying to get my dad into someone else for a second opinion. Thank you for your reply and I wish you continued success beating this disease.
This is tough watching my dad go through this. His cancer is very aggressive. He was diagnosed last Nov with a PSA 64, Gleason 10 and Mets in almost every bone in his body. We were shocked! He has always been an extremely healthy man. He did great on Zytiga for about 5 months and then it started rising. Then we switched to Xtandi and in the 4wks from Zytiga to Xtandi it went from 3.5 to 10 and I am so scared. I’m praying it’s a flare. Do you know anything about this so called “flare phenomenon” that can happen??
Sorry to hear you and your father are going through this, it's a horrible disease.
It runs in my family sadly (3 people had it) so I might be at risk too one day.
From what I know, a PSA flare is an increase in PSA level with no symptomatic progression and it can last 1-2 months, that's probably why a lot of physicians reccomend to keep using Zytiga and Xtandi for at least 3 months to be 100% sure if the drugs are working or not.
My father had it when he started on Zytiga, almost 4 months ago, his PSA first dropped after two weeks, then increased a bit one month after, then dropped the next two months and fortunately it's still dropping or remains stable at worst (he had surgery 15 months ago and has a Gleason 7, fortunately no bone mets yet, a few lymph nodes only), that's a clear example of PSA flare I think.
PC cells might release PSA when they die during treatment, hence why the number increases.
I think it'll be a good choice to ask for Provenge which might increase Xtandi's effectiveness. Let us know how it goes.
I dropped 95% going from zytiga to xtandi (from a psa of 1000 and some mets) to 5 and a clear scan showing healing. I had Provenge six months before starting xtandi, which is about the time Provenge kicks in. So Provenge is worth a chance.
My Doctor says Provenge benefits are not easily provable,, but seem to be beneficial when coupled with other treatments. My psa was increasing geometrically thus I opted for Provenge. Nine months after treatment psa reached my high of 166. Changed from Bicalutamide to Xtandi and at the `11 month point psa was 35 and now at 12 months psa is 28.6. I am also taking monthly Xgeva injections and Lupron every 3 months. My bone density measures are improved and lymph node tumor decreased in size by from 5cm to 3 cm. Rib pain has pretty much gone. I have increased energy and have lost 20 pounds from July to October. Now Doctor is recommending Xofigo. I have opted wait to get the full benefit of my switch to Xtandi. Bottom line I think is our benefits come from a combination of sources.
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low hemoglobin and platelets
ALKALINE PHOSPHATASE NUMBER HIGHER
Low hemoglobin
High Alkaline Phosphatase Level
Admitted to hospital, low hemoglobin 
