The first cycle of Docetaxel+Zometa+L... - Advanced Prostate...

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The first cycle of Docetaxel+Zometa+Lucrin .. What should I expect next? PSA went up...

bellyhappy58 profile image
19 Replies

-The First week after treatment was rough…

-The first few days , the fatigue, poor appetite and sleep were difficult. Everything tasted bland.

-On the 4th and 5th day after the infusion, every single of my bones were aching so badly and your heart was pounding like a drum beat. The headache would not go away. The fatigue was at its worst. I could not even get out of the house for a walk. It was like the “Mother of all flu”

-Loss of 3 Kg in that week.

- The second week was a lot better and but the blood test showed lower white blood cell count. Concern but not serious.

-Appetite was coming back and definitely started to do some walking and feeling stronger.

-Needed to avoid crowded places due to low white blood cell count.

-Going into the Third Week, felt that I am making good recovery and gaining the strength back.

-Lower back started to ache and left eye started to be less sensitive.

-Just came back from the doctor, white blood cells count is back to normal but red blood cell count dropped below standard. Lower backache, eye issue as well as the red blood cell are not serious enough to warrant any intervention.

- PSA went from 0.232 to 0.351

-Doctor happy with the progress and felt that my body is ready for the next infusion on Sept 4th.

Any suggestion about what to expect next as well as the PSA increase would be greatly appreciated.

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bellyhappy58
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19 Replies
Hex40 profile image
Hex40

Try something like taking Claritin every morning it will help with the joint pain.

bellyhappy58 profile image
bellyhappy58 in reply to Hex40

Thanks

tom67inMA profile image
tom67inMA

Was this your first Lucrin injection or had you already been on it? That can definitely cause a testosterone spike which leads to spikes in PSA and symptoms, and I say that from first hand experience.

If docetaxel is the only thing that's changed, then it's too soon to tell if the pain and PSA is from cancer die-off or not. I only had my PSA tested just prior to each infusion, so if I had spikes in the week or two afterwards my MO and I didn't know or care.

Are you getting any steroids along with docetaxel? I took dexamethasone in the hours leading up to an infusion, got more dexamethasone as part of the infusion, and took prednisone the rest of the time. Dexamethasone was more than enough to offset pain and fatigue.

bellyhappy58 profile image
bellyhappy58 in reply to tom67inMA

Had Lucrin jab (once every 3 months ) in the last nine months. The test was just conducted and oncologist is comfortable for me to go ahead with the next infusion on Sept 4th. I am also having dexamenthasone before and three days after the infusion as well as prednisone for the rest of the time too. Thanks for the inputs. God bless

Pleroma profile image
Pleroma

We all seem to react slightly differently with chemo.

In my case, as in most, the first week after infusion is always the killer.

The subsequent infusions should get easier and easier on your body.

Suggest to your MO whether reducing the dosage is an option.

I would not worry too much about PSA rise. Sounds like you got tested after the chemo??

That would be a bit odd.

Most people only get tested immediately prior to the infusion.

bellyhappy58 profile image
bellyhappy58 in reply to Pleroma

The blood test was just conducted on Friday so as to ensure that i m ready for the next cycle on Sept 4th. Oncologist is away for a week. Thanks for the inputs.

CantChoose profile image
CantChoose

My husband's experience has been much the same. Day 5, he feels like a truck hit him. He pushes himself to eat and avoids spicy things. Many foods taste off or bland. He works through it because he says being upright is better than being in bed, not moving, but I don't think he gets much done on those days.

For him, his blood counts are never strong so it's hard to tell whether chemo is impacting him. Thankfully, no infections other than the ever-present thrush.

Find what works for you. He takes Aleve on the bad days in addition to Claritin and steroid, with an Atavan at night to sleep.

bellyhappy58 profile image
bellyhappy58 in reply to CantChoose

I love the approach that your husband is taking. I also tried to replicate it. Initially, it was really tough to get started. Once it gets going, especially after second week, I felt a lot better. Have been to gym for a 45 mins workout every day...and walk 10 K steps too since.

strummer profile image
strummer

my husband had steroids day before, day of and day after chemo. he also took 1 Claritin and 1 Zyrtec for 4 days before chemo and week after. really reduced bone pain. hope this can help you feel better. hang in there!

bellyhappy58 profile image
bellyhappy58 in reply to strummer

Thanks....it is a fight I intent to win. God bless

Just curious to know why you have gone the "sledgehammer" route with such a low PSA which should be controllable with less dangerous things (or use of fractional doses so not so much damage is caused). My reading of the general situation is to use Docetaxel when the PSA is marching up >1% a day when other things have failed - and the PSA has already passed the 6 mark (or much higher). i.e. almost as a "last chance" thing to do (and from the statistics, usually too late too). But, it seems that using Docetaxel (and similar) while you are still fit enough to recover can get a totally different outcome and months (and even years) of low PSA follows. Since nobody seems to have a good idea how to pre-select those that will get a good result, and those that will have a disaster to deal with, I am on an bit of a mission to see if there are answers out there that will identify the ones that will not benefit (and that seems to be the majority who get Docetaxel).

By the way - PSA goes all over the place with Chemo, and a very low "false bottom" reading can be expected 2 to 3 weeks after the last round (so this does not mean it is working). This is often (but not always) followed by a rapid increase in the PSA as the immune system recovers and starts killing the cancer again. It may double every 4 days for a while (somewhat frightening!), but will start to level off after about a month - which is when you can see how well it worked (or not).

Looking forward to your posts as you take this journey. Good luck!

bellyhappy58 profile image
bellyhappy58 in reply to

Thanks, David for your insight. My decision to go ahead with docetaxel is also taken from the Stampede Study, friends that had similar case ( multiple mets) , two oncologists, and myage (while i m still relatively young) . With multiple mets, the cancer could have also mutated and possibly 'hibernating' somewhere in my body too.

Will update my situation as I am going thru this journey. God bless

in reply to bellyhappy58

My best wishes for a successful journey. My experience was radically different from yours and all my "on the drip" friends did not survive their Docetaxel. I also go 2 views of the Pearly Gates - 5 days after the first one, and 3 weeks after No. 4 (and about to do No.5 which I refused). I also spent several months in Hell. I do hope that one day there will be a reliable guideline to identify the potential failures.

Cheerr profile image
Cheerr in reply to

Hi David,

It seems you had a bad experience with chemo? And your friends as well?? Would like to know more.

We’re about to start chemo in a week or two.

in reply to Cheerr

I must confess to being totally biased against Docetaxel after my near death experiences. I had never been in hospital before. I do recognise that some do get benefit from it - but nobody seems to know precisely why it saves one person and kills another. The cynic in me sees Onco's "seeing what happens as there is a big fee to be made", but I am sure experienced Onco's have some guidelines about who they are about to kill. If not - shame on them as Docetaxel has been in use for 22 years. The deaths just from the treatment are a disgrace (and I was nearly another). Real survival numbers are hard to find, but around half of the men who get Docetaxel are still alive after 20 months. They also seem to "lets try another round and see if that kills the cancer" when the first rounds look like failures. There seems to be a growing number of Onco's who see how well fractional doses (10%) work for patients, and may combine that with other treatments which potentiate each other.

An extract of the notes I made at the time (2 years ago):

"The first treatment (in my case) resulted in a massive increase in cancer cells over the first few days – perhaps as much as 50%. The possible explanation for this is the sudden removal of the body’s natural defense mechanisms and a delay in the docetaxel actually reaching the cells hidden in the bones, which are then free to proliferate rapidly for up to 10 days. There is some pain attached to this, but suppressed by prednisone and Medrol. As the body gets back some of its natural defenses 2 weeks later, there is a kill-off of some of the new growth (and the resultant inflammation). The PSA level increased. Thrush was a problem, as usual medications are too strong and wipe out any remaining natural defenses."

I ended up with more cancer than when I started, and my immune system was too trashed to fight a brand new emergency (Vit C via IV and Xtandi saved my life). I was not out of the woods, as I was now a diabetic and had life-threatening high blood pressure. It took a year to get the BP under control, and 18 months to get the blood sugar back to normal. Doctaxel is supposed to stop cancer cell division and growth but that was not my experience (I do not think it kills any existing cells in spite of claims it does). It certainly stops the rest of the body creating new cells - and that includes the almost total death of the entire gut biome (it sets like concrete as a result and can cause bleeding).

The logic of giving Docetaxel (which trashes the body permanently - it never gets back to where it was) when gentle alternatives are the correct treatment, defies reason. The Onco's work to some "blue book" with highly suspect methods, but "safe" from being sued. I actually regard giving Docetaxel to patients with low PSA (less than 5) as criminal. There are plenty of gentle treatments that will keep the cancer under control and buy time (perhaps many years) before chemo should even be considered. When those fail, I would never consider having another go - I would go for things like Lu177 which has a very low fatality rate and a high success rate.

But don't let me put you off if you think it is the right thing to do.

Dachshundlove profile image
Dachshundlove

Hi Bellyhappy58:

My husband will be doing his 3rd infusion of docetaxal next week. His PSA also jumped up about 10% after first infusion.

Chemo is very hard on the body, but it sounds like your husband is handling it relatively well. I suspect most people do not remain side effect free with any of these strong drugs.

I hope he has a great response to this treatment! Feel free to private message if you have other questions. It sound like we are 1 infusion ahead of you guys.

bellyhappy58 profile image
bellyhappy58 in reply to Dachshundlove

Just started my second infusion...will reach out to you if needed. God bless

You can expect the feeling like you have a flu without the fever to last a few days longer after each infusion. Basically the easiest is the first two. Get your rest and drink lots of fluids.

Cheerr profile image
Cheerr

Hi,

We’re about to start chemo in a week or two as well.

I wish your second infusion goes much smoother than the first one.

Will be following your updates and hope you will be able to tolerate the side effects.

Goodluck :)

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