Zometa infusion and PSA in my rear view mirror for a few months.

[Costarica1961]

Well I am happy to report my PSA with xtand, going on two months is 0.08 after zytiga failure several months ago, the side effect have been non existent to date aside from my zometa infusion on Friday l on Saturday I had one full day of feeling like I had been dropped from a roof several times and then ran over for good measure. From my jaw to my pinky toes were hurting. Although if that's it and the benefits out weigh the temporary misery then I am on board for my next round. Has anybody experienced this bone and muscle pain. And does this possibly mean zometa doesn't agree with my body make up.

[Kaliber]

I have the same thing. Been getting Zometa infusions for 15 months and same thing every time. 1st one was the worse but you kinda know what to expect and it gets a little easier. Make sure you load up on OTC flu meds before the infusion, and drink a lot of liquids immediately after your infusion to rinse it out of you to prevent organ damage. I like those grape sports drinks. More is better.

It hits me extremely hard , so I double up on my break thru pain meds slightly ahead of when I expect the bone pain to start. Early on it hit like a sledgehammer by the evening of the day of infusion. Now it delays up to 3 - 4 days and hits ... and lingers somewhat up to 8 days.

A number of people experience this. Zometa is really important if you have bone mets and mine are extensive. I really want the treatment no matter how hard the hammer drops ... it’s just a few days of manageable grief for major bone benefits. If you experience any of the severe bone shaking, inability to breathe properly due to rib cage pain or have the mental issues, message me.

Hang in there .... yes it kicks your a$$ but it’s just a couple days real bad and you can handle it if you prepare as I mentioned.

Peace brother ,you got this 💪💪💪💪✌️✌️✌️

[Costarica1961 in reply to Kaliber]

I truly am sorry for your extensive Mets, I have shown one on L3 and a couple months ago they zapped it SBRT. I understand zometa slows the progression of new Mets and builds up bones on the previous ones. I had a one day of a ass kicking but next time I will be ready. I actually had my lupron shot the same day I'm not sure if that makes a difference. I had 102 fever and extreme aches and pain. All over as well in the sternum , which was a little concerning thinking it may be my heart. I drank the grape sport drink as well and took zyrtec as recommended by the nurse and tylenol, she also suggested getting up and moving despite the discomfort. But amazingly I went to work the next day and functioned at a 80% with minimal issues. I am pounding liquids down as I message and that helps I'm sure thankyou for your help. I do appreciate you very much.💥😊

[Kaliber in reply to Costarica1961]

Sounds like you are doing everything right. Being able to go to work so soon is a good sign as well. The treatments get a little easier over time and what is happening to you doesn’t sound unusual. You can Google Zometa after effects and search this group for “ Zometa “ for additional information and bone strength discussions. There is a lot of additional info available. Good luck with your treatments and journey brother. Good to talk with you.

Best wishes 💪💪💪😁😁😁

[Kaliber in reply to Kaliber]

Btw: that sternum discomfort happens to me as well , mine can spread around sideways to my ribs and spine making it painful / difficult to breathe. Not breathing properly - perceived lack of oxygen can induce a kind of panic attack in me. .... I use an inexpensive finger oximeter and some of that OTC canned sports oxygen and a dash of Xanax when that happens. Clears up the panic attack part fairly quickly and pain meds does the rest. Doesn’t happen as often these days and the episodes are much lighter now as well. They can be rough and concerning early on tho. Some discomfort in the sternum doesn’t sound too bad , sounds like you are ok.

There is the handy simple Kardia home AI ekg device that works blue tooth to an analytical app on your smartphone and many better blood pressure machines have AI ekg analysis built in nowadays as well. They are very nxpensive and can provide peace of mind - early warning if you have cardiac concerns. As always, consult with your medical support crew if you have symptoms or concerns.

[Costarica1961 in reply to Kaliber]

Good day, I wanted to ask your opinion. I discussed with you a few months ago about zometa which I did. Well it's that time again currently no bone Mets aside from the previous L 3 that was blasted, just went through 4 different scans. All clear Would you do zometa given the current pandemic with no Mets or would skip it until visable Mets appear I hope your doing good under these extraordinary conditions. We are taking heavy fire my brother. Peace.

[Kaliber in reply to Costarica1961]

Of course you will want the advice of your medical team ....but .....

Zometa is important but the risk with catching the coronavirus is greater right now. Zometa isn’t a critical drug and can be put off until a bit later. I was due a Zometa infusion at the beginning of last month and mine has been rescheduled until the first of next month ....” so far “ ....

I wouldn’t relate the appearance of additional mets or not, too much ... Zometa is usually more about repairing bone damage your treatment causes to your bones. It depends upon your individual circumstances, your medical team is the best source of reference.

Nice to hear from you, stay safe .

💪💪💪✌️✌️

[Costarica1961 in reply to Kaliber]

Thankyou I will ultimately weigh all the thoughts and decide I appreciate your input. I wish you the best.

[Costarica1961 in reply to Kaliber]

Thankyou my friend

[nobaday in reply to Kaliber]

Kaliber

Do you have low bone density ... main reason for Zometa.

[Kaliber in reply to nobaday]

my Oncologist says my adt treatment will cause bone loss in me due to the advanced nature of my PCa. Zometa will stop that loss. Additionally I have what looks like ( in a nuke uptake scan ) a hyper case of osteoarthritis that affects every bone joint in my body including the skull joints. It’s not osteoarthritis , it’s more to due with my bones being paved with mets. He says Zometa will slow down the destruction in my joints and repair it some as well. Zometa isn’t necessarily all about plain bone density in everyone. In my case, Zometa has reduced the “ Christmas tree “ look in my nuke uptake scans considerably and has made heavily damaged places like my thorax , spine, knees and feet considerably more comfortable.

Peace brother ✌️

[Costarica1961 in reply to Kaliber]

Some of these long term side effects I hear of are not as concerning as they may have been before diagnosis. Maybe stinking thinking but I am trying also to be realistic

[Kaliber in reply to Costarica1961]

Yea , sometimes it’s a matter of priorities yayahahahaya Like if you are getting long term prolia bone treatments and fall down , your likelihood of a clean snapped leg or pelvis is potentially higher. Happens to some , not others. Same with Zometa ... with long term Zometa it’s the pelvic fracture ( you can Google “ pelvic fractures with Zometa “ for many detailed scholarly articles. ) It can happen in a smaller percentage of people . The point being that the benefits of Zometa far outweighs the relatively limited risk in people with stage 4 metastatic PCa. Google “ what is the benefit of Zometa in prostrate cancer “, and the first return is from the government health site saying it “ prevents bone loss in patients receiving adt treatments “. Adt causes bone loss due to T deprivation in men .. Supposedly Zometa prevents that. I’m not a doctor , I just play one on TV, always talk to your cancer medical support team as a best resource. A little Google research helps sometimes too.

Best wishes 😁😁😁😁

[Schwah]

Not sure about your body make u but consider adding Celebrex s clinical studies showed the two combined (but neither alone) reduced PC deaths over 20%.

Schwah

[Costarica1961 in reply to Schwah]

Ok thankyou 20% sounds good Celebrex it is.

[Tall_Allen]

Suggest you talk to your oncologist about adding Celebrex.

[Costarica1961 in reply to Tall_Allen]

Thankyou I see her in March I will before the next infusion, will this eliviate the side effects I assume. Tall_Allen is the intense side effects a precursor to long term possible issues.

[Tall_Allen]

It may help with any bone pain you may be having. Moreover, the combination has been shown to increase survival by 22%. You may wish to forward her this study:

ascopubs.org/doi/full/10.12...

[Costarica1961 in reply to Tall_Allen]

Thankyou

[nobaday]

Hi Costa

Did you get a bone density scan to show it is low??

I just asked Kaliber whether he has low bone density. TA asked if you had a scan in your last post. My Oncologist in Canada believes Zometa is overprescribed in the US. Kaliber is 73, we are 57 or 58. I think it’s reported that long term use results in bones becoming brittle/ fractures.

Plus you are getting bone pain at infusion time.

Just questioning whether an actual benefit based on data and side effects? Particularly at your ‘young’ age!

[Costarica1961 in reply to nobaday]

I am 58 as well. No low bone density that's been diagnosed although I had a L3 bone met. And failure of zytiga with a PSA rise. I guess the relevant issue is the bone met .

[Costarica1961 in reply to nobaday]

No I did not just bone met on L3 and microscopic elsewhere I'm sure. I wouldnt be surprised whenever money's involved . Although based on my feedback from these smart folks on the forum it's the right decision.time will tell.

[nobaday in reply to Costarica1961]

One of the smartest folks is Tall Allen and he said in a reply to your last post his friends use of the gym keeps his bone density good so no need for Zometa for his friend and don’t take a medication if no need for it.

Plus the side effects are pain and flu type symptoms and long term femur fracture etc

Thus I’m going to the gym and will keep Zometa off my radar for now!! I had spine surgery, radiation and a C3 neck tumour and stereotactic radiation but have zero plan to take Zometa.

However it is possible it could help you at L3 as SBRT does weaken bones and increase likelihood of fracture.

So I will stick with my MO opinion and you no doubt will stick with yours but it’s good to hear the different views, plusses and minuses and make informed decisions.

As per TA , are you taking Celebrex as well?

[Costarica1961]

Well I'm in the deep end of the pool and will welcome all sound and informed advise. Tall Allen has been a great source of information to bounce things off of, i then download links and my personal notes and hopefully make decisions that will prolong my life. I also see two different oncologist and ask their thoughts . I am truly my own advocate, what sold me on zometa taken with Celebrex was the slowing of the cancer progression are there scientific studies on working out and how much it slows the cancer progression which I do as well. So perhaps if zometa / celebrex slows it by 20% and working out by 20% then I'm at 40%. Thanks for your input.

[Iyana271]

Well, Joint pain and bone pain is normal while you're taking Zometa. You should ask your doctor that you can deal with the pain he can suggest some medication.

Soaking in a hot bath may also be helpful to deal with the pain and to relax the muscle spasms. Talk to your doctor. Benadryl can also alleviate some of the side effects. I wish you the best and pray that you feel better soon.

Best wishes!

[Hidden]

"I had one full day of feeling like I had been dropped from a roof several times and then ran over for good measure."

I think that sums up my latest Zometa infusion quite well. Really feel like I've been hit by a truck, fever, extreme fatigue, general malaise. It's quite frightening. I found help with over-the-counter meds, but I've been in bed most of today.