Double whammy chemo

[WXYZ123]

John just started a carboplatin and cabazitaxel combo chemo Tuesday. Between the anti nausea med and the overall side effects the first three days after were pretty awful. He was so groggy and sleepy and fatigued.

Any suggestions other than acupuncture which we will add soon? Maybe it’s time to check out BIRM!?! Or?

BTW before anyone asks, PSA 1300, Gleason 4+5/9, bone Mets, lymph, no organs.

Was on firmagon/Xgeva , now back to Lupron just to keep the testosterone low - his is under 7.

Zytiga did nothing

He had 9 sessions of Docetaxel with Dr Tagawa -Weill Cornell- and it was a walk in the park. Only felt good. Some lymph tumors diminished but a new adrenal showed up, hence the change to the carbo/cabazi (Dana Farber-Dr Chris Sweeney)

( we relocated to Cambridge)

Also going to see Dr Drake to see if immunotherapy would do anything for John’s situation

Any thoughts?

Grateful for y’all

[jdm3]

No good suggestions for fatigue other than he has to keep moving. Even walking around the house periodically is good for circulation and muscles.

You are getting great care if you are seeing Dr. Sweeney.

Wishing you all the best.

[Blair77]

No ideas...but this is the combo they are suggesting my husband try. Did they say how long he would be on it for?

[WXYZ123 in reply to Blair77]

As long as it’s killing the Cancer faster than the patient

[Blair77 in reply to WXYZ123]

My husbands oncologist said that he would only stay on it for a few cycles and then try immunotherapy or LU 177 possibly.

[WXYZ123 in reply to Blair77]

Who is your husbands Oncologist?

[Blair77 in reply to WXYZ123]

Dr. Agarwal at UCSF in California.

[Roberthale7318 in reply to Blair77]

Great MO!

[whatsinaname in reply to WXYZ123]

Great reply, WXYZ123. Speaking from experience, Docetaxel did bugger-all for me except screw with my immune system.

[WXYZ123]

Thanks! We’ve seen Sam Denmeade a few years ago, I’ll reach out again to him

Best to you!

[Tall_Allen]

Why did you add carboplatin? Was there a genomic aberration being addressed?

[WXYZ123 in reply to Tall_Allen]

We didn’t add it. Two top notch oncologists did. Scott Tagawa and Chris Sweeney

[Tall_Allen]

I'm asking why?

[judg69]

You are receiving excellent care at present. At this stage IMO there is at least as much to lose as to gain by changing medical providers and treatment protocol. All the best to you and your husband, judg69

[Luv2fish]

My hubby had 9 of cabazitazel + carboplatin last year. He was “lucky” that the only side effect was fatigue. Days 3 and 4 were the worst. Absolutely flattened him. Slept close to 20 hrs day.

We have 2 oncologists, one local for most treatments including chemo, and Dr Aggarwal at UCSF.

[Blair77 in reply to Luv2fish]

We have Dr Agarwal at UCSF too!

[WXYZ123]

What is he doing now and how is he doing? Markers? Energy? Pain?

How long has it been since it ended?

[Luv2fish in reply to WXYZ123]

His last infusion was Oct 31st. His scans were stable until the last ones the end of June which showed a little progression. He never had any pain until recently and is able to manage it with ibuprofen alone, and never more than 2. He’s been getting Keytruda infusions and has another set of scans tomorrow. His PSA is higher than it has ever been, 80 something, but we new Keytruda was unlikely to result in a decrease, and Dr A puts more faith in the scans and pain level. We see him on Aug 6th and we will go from there.

[WXYZ123 in reply to Luv2fish]

80 sounds awesome...John is at 1300😞but no pain that lasts...just super fatigued, unable to focus. We’ll try the Ginseng someone suggested.

Scans are definitely a better indicator than PSA.

Thanks and best wishes

[Hidden in reply to WXYZ123]

Ginseng is an herb not recommended actually. Check out the Memorial Sloan Kittering herb site. It will tell you about each of the herbs out there and their interaction with conditions and treatment. Fatigue is tough to battle. One suggestion that can help is to have a scheduled short walk three times a day to get some exercise and fresh air. Stay strong

[abmicro]

I saw BOOST aviator oxygen on the forum and tried it. Helped a little. Buy cans of it online. Not expensive. I used NuVigil broken in half sparingly in the morning a years ago. Took a full one on vacation in 2008 and stayed up 2 days.

[WXYZ123 in reply to abmicro]

Thanks 🙏

[vandy69]

Before each infusion of my 2 rounds of Docetaxel/Carboplatin I have small infusion of Aloxi for nausea—it worked with no side effects.

Google Mayo Clinic and Wisconsin American ginseng for fatigue trial—used it during all 12 cycles of chemo.

Best Wishes. Never Give In.

Mark, Atlanta

[WXYZ123 in reply to vandy69]

Thank you I will look up the Ginseng!

[MelaniePaul]

Hi there,

Sorry John has been feeling so bad. However, the side-effects you describe are quite normal with this kind of Chemo combination. So I would stick with it for now in the hope that it really helps and does more than Docetaxol was able to do. Get plenty of rest, a little bit of gentle exercice, eat well, drink plenty of water, and try and keep a positive mindset all helps I am sure.

Love, Mel.

[WXYZ123 in reply to MelaniePaul]

Thanks...we'll see in a few weeks if it is doing anything to kick back the cancer...