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First Chemo with Docetaxel done.
Hubby had his first chemo treatment on Friday (posting this on Sunday). So far, no nausea, fever, or aches and pains. I guess for some of the side effects it's too soon to tell?
Docetaxel, Relugolix, and Darolutamide. Dexamethasone taken day before, day of, and day after the infusion.
He does have a bit of a butterfly rash on his face (red, no bumps or itch) and says his legs feel 'heavy' (no swelling). A bit tired. The evening after the infusion he had a bit of dry mouth that continues (but not bad).
We will talk to the clinic on Tuesday - I'm thinking these are pretty mild side effects that won't require any action.
Fingers crossed!
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A real good combination of drugs. I’ve been on relugolix (Orgovyx) and Darolutamide for almost three years and undetectable for 27 months. They really work and the chemo can knock down the cancer so that they can be effective.
One thing you need to be aware of is there are a lot of side effects from ADT (Orgovyx).
Due to their different mechanisms of action. ADT which includes Orgovyx, Firmagon, Lupron, Eligard, Prostap, Camcevi, Lucrin, Zoladex, Trelstar, Pamorelin, and Decapeptyl can cause numerous side effects. Actually due to a lack of testosterone.
Hot flashes
Fatigue
Muscle deterioration
Bone weakening
Brain fog
Depression
Weight gain
Joint pain
Difficulty in breathing
Not all of these side effects occur to everyone on the drugs. Most of them are just things you have to be aware of and circumvent. I run on the track twice a day, 1 mile at least, to help prevent bone weakening, fatigue and muscle deterioration. I also go to the gym three days a week (usually) and spend an hour with all different types of weight exercises. One thing that happens is people get a beer belly from the muscle deterioration, I do a lot of sit-ups to offset that.
Some people get depression but it is not common. It is easily treatable, according to people that have reported it on here and on Online Meetings I have participated in. If he has that problem Come back and ask for help, Or see a psychiatrist about doing something to relieve the depression.
Some people get no hot flashes at all. Others only have a few hot flashes and they are very minor. I had severe hot flashes for the first year on Lupron. As a hot flash was hitting I would feel a lot of fatigue and sweat would pour down from my head into my eyes onto my chest and under my arms. After a year, my oncologist prescribed a depo-provera shot every three months and it really stopped those hot flashes on Lupron. There are other hormones that can do this, speak to your doctor. If you have this problem, we can give you a list of drugs that can stop it. A doctor at a recent conference put out a big list.
I know one person that says eating tofu every day really controlled his hot flashes, another person in this forum said the same thing. Tofu does have properties similar to endocrine hormones but a lot weaker. Can’t hurt to try it. Seems they ate it daily.
According to a doctor that spoke to a webinar, many people on ADT, if they are staying on ADT for an extended period or have become castrate resistant should be taking bone straighteners. I took Fosamax for six years and I’m now on Zometa. That along with calcium taken daily helps keep your bones strong. Ask your doctor about this. You really need to take 500 mg of calcium twice a day and at least 1000 mg of vitamin D. Speak to your doctor about this. It is really important. This be done to keep your bone strength.
I have never gained any weight while on ADT. I get on the scale every morning and base what I eat on what I weigh. Skip lunch at times. Some people gain a lot of weight. The average is 5 pounds but some gain more and some gain none..
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5 ReactionsThanks!
He started the Relugolix mid-January with minimal side effects - and it helped tremendously.
He is also taking calcium, magnesium, and D3 (single pill) 3x day.
He was quite inactive for a couple of months due to a back injury and what we now know was pain and fatigue from the cancer (hardly able to walk!). He is able to get out walking some and is looking towards physio soon to build up his strength again.
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1 ReactionYay!
My husband had just tiredness that got worse after each one, starting maybe day 5 after it, I think after dose 2 the hair started coming out in clumps in the shower so he shaved it off.
One odd side effect he got from the steroid before, was hiccups! One day he had it 45 min. (The afternoon or evening after the chemo, I think it was something like 6 hours after chemo) Nothing worked and at night he couldn't get ahold of the doctor to prescribe something (yeah there's a pill for that) a friend told him to breathe into a paper or Ziploc bag to the point of almost passing out so that once he removed the bag he gasped for air! It did the trick every time and he got this several times!
Neuropathy started after the last dose I think and took a few months to disappear in the toes.
We tried to chemo gloves and booties and don't know if they worked or just diminished that.
He took daily naps on the couch.
Again the symptoms accumulate after each session but not super bad.
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4 Reactions@beaquilter
Thanks! It helps to hear from other partners 🙂
Day 3 post infusion today. No new side effects today, but the fatigue is worse (but not severe at all). He has more of a "general unwell" feeling today.
I remember them telling us that the effects can be cumulative after each treatment. 5 more to go. He had the cold booties and gloves too.
What do / did you do to help yourself? I know I need to care for me so I can care for him. Daily walks with the dog, not going down internet rabbit holes, enough sleep, and eating even when I don't really want to. I / we are not doing any socializing right now (looking forward to warmer weather where we can be outdoors more and get together with friends and family outside).
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3 Reactions@canadaanne I think the fatigue hits around day 5....
I'm a quilter and sew almost every day and listen to music or an audiobook- I like audiobooks because I can't "think" while listening to those!
We walk the dog almost every day too- when it's not too cold.
I do have a drink at night before going to bed- a "hard" sparkling water- I think it's half the alcohol of a glass of wine- it's more to keep me asleep as I used to wake up in the middle of the night- hot flash or whatever, I know it's not good and I've gained some weight but I'm also late 40s so hormones are shifting and it all sucks, I'm sure stress makes you gain weight too!
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1 Reaction@jeffmarc Hi Jeff
When you recommend " ... at least 1000 mg of vitamin D ..." did you mean to say IU rather than mg?
Most of the notes I've seen recommend 1,000 IU to 2,000 IU of vitamin D per day (which is 25 to 50 mcg)
Also, some sources recomment 400 - 420 mgs of magnesium glyginate taken separately from the calcium as they compete with each other during absorbtion.
I appreciate your active and detailed posts on this site.
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1 Reaction@rlplaut
Sorry about that. I’ve done that a few times since it’s milligrams with almost everything else and IU with vitamin D?
1000 to 2000 IU is all they recommend.
Calcium citrate is also the preferred type, according to a pharmacist that calls me every six months and told me to start taking that one instead of the other one. Be aware that the maximum calcium your body can consume at one time is 500 mg so you have to take 500 mg twice a day. I was taking it three times a day because my calcium would just not come up to near normal.
Magnesium is good to take. I get Costco‘s calcium citrate, which has magnesium and vitamin D.
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1 Reaction@jeffmarc I have a friend who is having a recurrence post protector., .71 psa they gave him pills prior to getting him set up for a shot. His instructions said it would take 60 min. Sounds like an infusion to us. Do any of the”shots” take more than a few seconds? We are puzzled
@beaquilter Big Fatigue started yesterday and is worse today, along with some pins and needles in his lower legs and feet. Did they give your husband anything for the neuropathy?
I was told to watch his body temperature carefully and if it went over 100F (38C) to go to the emergency room and not to wait. I've been monitoring his temperature and when it hit 99.8F last night, I took him in. They did bloodwork and all the other tests as per the protocol. Everything is fine and there is no indication of infection (PHEW!). His temperature is around 99.5F (37.5C) today. I gather that can be common after the infusion and won't last long.
@billfarm
Someone who has their PSA rise to .71 after a prostatectomy needs to get treatment soon and there is no infusion they would get unless they’re giving them chemo or Pluvicto. The normal procedure would be to give the person ADT followed by salvage radiation.
The usual thing would be to give them a shot of ADT (Lupron, Fermagon or Eligard) Which only takes a moment. The pill would be Biclutamide 2 weeks before Lupron or Eligard.
The only other infusion would be for bone strengthening like Xgeva or Zometa, And they don’t take 60 minutes.
I think they may have misunderstood what’s happening.
Here is what the American Society of clinical oncology says about treatment after the PSA rises following a prostatectomy. As you can see they Recommend ADT if you wait until PSA is above .5.
From Ascopubs about what PSA to do salvage radiation.
≤0.2 ng/mL: Starting at this level maximizes disease control and long-term survival. Patients treated at PSA < 0.2 ng/mL achieve higher rates of undetectable post-SRT PSA (56-70%) and improved 5-year progression-free survival (62.7-75%). Delaying SRT beyond PSA ≥0.25 ng/mL increases mortality risk by ~50%.
0.2–0.5 ng/mL: Still effective, particularly for patients with low-risk features (e.g., Gleason ≤7, slow PSA doubling time). The Journal of Clinical Oncology recommends SRT before PSA exceeds 0.25 ng/mL to preserve curative potential.
0.5–1.0 ng/mL: Salvage radiation remains beneficial but may require combining with androgen deprivation therapy (ADT) for higher-risk cases.
This article discusses the above;
https://ascopost.com/news/march-2023/psa-level-at-time-of-salvage-radiation-therapy-after-radical-prostatectomy-and-risk-of-all-cause-mortality/