Advanced Prostate Cancer

First Week Following First Chemo

It has been and interesting week after my first chemo treatment. First, the Benedryl used in the premeds resulted in a hilararous math problem solving discussion with my wife. Received an hour of cabazitaxel and then and hour of carboplatin. At the conclusion, I received a Neulasta shot. So, my experience to date - first 2 or 3 days I had strange aches and pains in my legs, but only below the knees. Also had other pains in the hips. I was told this is a side effect of the Neulasta and that Claritin helps manage these side effects. It worked. Minor nausea the first 2 to 3 days. Not sure how much of it was mental vs real, but the Reglin helped control this. Diarrhea on day 6, controlled well with Imodium. I was able to work full days Mon-Wed. Then, Day 7 and 8 - flu like symptoms, stayed in bed all day. Took more Claritin and dexamethasone, but it di not help much. Thankfully, I have maintained my appetite throughout. I also still have my flowing locks of gray hair (ha ha). I know, I am still early in the process. I am hoping that the flu like symptoms go away. I am am also curious if the side effects get worse with each successive treatment?

A couple of things help me keep this all in perspective. Today is my 59th birthday and I am looking forward to many more. Sunday is Easter, a very important day for me and my family. And finally - I was sitting in a lab waiting room waiting to get my blood drawn for the post chemo blood test. It was a small room, and I could hear all the conversations. A gentleman was waiting to sign in, and was talking to the man in front of him. He said he had recently learned that he had cancer, that it has spread throuout his body, and that he had months to live. Wow! Wow! So, no pity party for me . I am thankful that I have the option and the opportunity for 9 more chemo treatments. One down, nine to go.

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Some guys tell me that bags of ice on the hands and feet can prevent neuropathy, and sucking on ice chips can prevent dysgeusia (loss of taste). (Those effects are temporary, but annoying) Some infusion places have cold caps that circulate cold water to help prevent hair falling out. If you try this, bring a cooler with lots of extra ice bags for 2 hours, and a couple of blankets to keep your core temperature warm.

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Thank you Tall Allen. Good advice I will keep in mind.

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I have read the same thing. The supposed explanation for it is that the chemotherapy drugs circulate through the blood stream. Ice is supposed to reduce circulation in the iced areas, thereby reducing exposure to the drugs. This should be safe to do if there is reason to believe that there is no cancer in the iced areas.

Alan

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I was reading your history in another post and it looks like you are currently on a clinical trial with quite a few options. Can you tell us everything you are currently on and where the trial goes from here for you?

As for the chemo side effects, everything sounds more or less typical. Everyone has basic variations of what you have experienced so far. I found some of the side effects to be cumulative, others not. Not to worry you, but I did find the first two cycles were the easiest. But the others were not that much worse so you just have to take them one at time. It sounds like you have the right attitude which is so important for success.

Keep us posted on your progress.

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I am currently on:

Lupron - 3 month shots

Apalutimide

Abiraterone (Zytiga)

Prednisone

Since starting the trial in January, my PSA did decrease by at least half ( 2.5 to 0.6) but my circulating tumor cells did not decrease to less than 5 (7). So, the trial has me doing chemo (cabazitaxel and carboplatin) for 10 3-week cycles.

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Wow, that's quite a regimen. I feel sorry for your cancer.

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That’s funny. Thanks for the humor.

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Here's what's happens to cancer cells under simulataneous attack from Lupron, Apalutamide, Abiraterone, Cabazitaxel and Carboplatin.

giphy.com/gifs/culture--run...

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Hahahaha......as the good cells are saying "love the smell of napalm in the morning"

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I am 4 down, 6 to go. This time. Then probably the summer off and start back up in the fall.

The side effects from chemo are weird - this is my third time in the chemo trenches and each infusion seems to be different any more. I had an infusion this past Monday, and felt pretty good Tuesday and Wednesday - then yesterday severe back pain all day, today the flu like shit and burnt tongue/mouth that we all love so much - where everything tastes like burnt rubber for a few days.

Keep hydrated, get rest- listen to your body and if you have a rough day, stay the hell in bed and fight again tomorrow - this shit will wear you down fast unless you give yourself a chance to heal.

Have a great Easter

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Thank you OTR. I had not even thought about the burnt tongue/mouth sensation until you mentioned. That describes it perfectly.

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That burnt rubber taste is from your cancer's tires as it gets the hell out of Dodge.

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I had similar side effects on my first round of Chemo, last Tuesday I finished my 9th treatment. What I found that a lot of the side effects occur each time but usually not all at once. What I have done is after going through the side effect process, I've learned better how to minimize the problems so overall they are not that bad. I haven't got rid of the fatigue yet but exercising helps with that and also with the mental problems (I've had similar problems dealing with simple math problems since starting these cancer drugs). Also Claritan or Benedril along with using Acquafor helps with the rash if you get it.

Good Luck

Dennis

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Thank you Dennis.

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Hi, I just had my 3rd Jevtana yesterday, though I have not added carbo yet so that may be a bit extra SE .I was up most of the night with the dex drip, and I had a nuelasta , so I did Claratin and an advil in preparation, I had a few muscle cramps but nothing serious. Are you getting aloxi as aq pre med for nausea. I get that and have never had that problem. Other that that it seems easier than taxotere for me, though taxotere was not bad through 12 cycles last year. I did lose my hair on taxotere, and it came back thick and wavy, as it was straight, That stuff will curl your hair. It seems I will not lose it through Jevtana, I am rubbing vit e into it this time, though I am not sure if that is the reason. Tall Allen has some good tips on icing fingers and feet which is also exactly what I have done, and have none of those SE, IE nueropathy,fingernail problem, taste issue. I think carbo adds to the possability of nueropathy which can be lived with, but still a bit of a PIA. I also walked in with ice cooler with gel cooling packs and extra ice3 to suck on ,as I do not trust hospital ice for the mouth. It looks like you are getting a great response. Keep us posted, You can see my 12 year history in my profile page, wish I could have given that guy in the waiting room a message of hope. Happy and Blessed Easter to you!

Dan

Ps Mr. Jack on here just completed 24 cycles of Jevtana.

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I would imagine Mr. Jack's insurance company bill was big for that. Hopefully he's got good coverage.

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Medicare seriously reduces the Bill.and the clinics seem to accept that.I was shocked to see how far medicare reduced my Jevtana bill.

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That's good because none of this stuff is cheap.

Retail prices for 1 gram

Gold $42.60

Platinum $48.00

Crack Cocaine $600.00

Plutonium $5,000.00

Tritium $30,000.00

Jevtana $114,500.00

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Thanks Dan. Love the humor “this stuff will curl your hair.”

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It an't about nothing. It will be over before you know it. A lot of weird type people pumping who knows what in me was the worst part of it all for my mind.

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First of all Happy Birthday to you!!🎂

My husband is on chemo the 4th out of 6 (taxotere) He is very tired and felt nausea for about 2 or 3 days, other than that he can eat very well. I iced his hands and feet during the one hour infusion and so far no Neuropathy. God willing my husband will be 59 in August as well. And it's true, Sunday is a very special day that gives us all hope. I pray that your treatment goes as smoothly as possible🙏

Sincerely,

Erika.

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Thank you Erika. I can tell your husband has a strong partner in this difficult journey. That is important. I am confident that I will be wishing him a Happy Birthday in August (if I can remember- haha). Happy Easter!

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Happy Birthday! 🎂

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Thank you James. Maybe we can meet up at MD Anderson sometime. I am going down every 3 weeks. Good luck on your treatment plan.

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For what it's worth I actually took a stepping platform and did light steps during my infusions. My thought was that by upping my blood circulation rate it would aid in the chemo getting to places it may not normally and possibly do a better job finding any circulating cancer cells. It also aided in not getting sleepy and feeling much better. I would even take a magazine and place it on a stand that sat high and read while stepping lightly. The nurses and doctors were very intrigued and supportive.

Can't say for sure it worked but it definitely didn't hurt. I had a great response to chemo. I had a prostatectomy a few months later and the result of the pathology report showed a lot of scar tissue in my nodes that was the result of cancer being eradicated.

Ron

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Good Saturday Morning,

I have been in this battle for almost 6 years (please see bio for complete treatment history).

I had 6 cycles of Docetaxel/Carboplatin chemo, ending on 1/9/18. The following is my input:

1. Iced hands and feet during Docetaxel to minimize peripheral neuropathy. Med Onc advised to take oral 100mg B6 daily for same reason.

2. Took Dexamethasone day before, day of, and day after infusion.

3. Began infusion with small dose of Aloxi to prevent nausea and it worked.

4. Took Wisconsin American ginseng to moderate chemo fatigue. Google Mayo Clinic and ginseng for their trial.

5. Left each session with On Body Injector of Neulasta to boost white blood cells. Med Onc said to take Claritin day before infusion for 6 days to limit any bone pain from Neulasta.

6. Used many Biotene products for teeth/mouth care. Your mouth may get sore.

For me, fatigue was cumulative. It lasted longer as I had more cycles. My chemo was on a Tuesday. Felt fine next day because I was still on Dexamethasone. Thursday I began to feel tired and Friday I stayed in pjs all day.

I had a very good response--PSA dropped from 10.8 to .4 at end of 6 cycles. Hoping for the same for you!

Best wishes. Never Give In.

Mark, Atlanta

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Welcome, try a little Tylenol for the body aches, doctor wrote me a script for the patches that go behind my ears for motion sickness. That helped. Lots of naps. The nulasta put me down after every shot . Leg aches can be helped be walking. Have fun

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Thank you all for the great advice and positive support. One other thing I have noticed since my first chemo treatment - I have not had a hot flash or night sweats in the nine days since the treatment. Is this coincidence, or has anyone else experience this?

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I've never heard of that happening. If you had fairly frequent hot flashes up until then, I would want to check my testosterone level if that continues. That's what I would do.

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Well never mind, I was about to comment then I realized that your ID wasn't Sexfactorformula.

Good Luck and Good Health.

j-o-h-n Saturday 03/31/2018 11:54 AM EDT

Have a nice Easter tomorrow and a nice Orthodox one next Sunday.

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I did Taxotere (4 months) and Lupron for (6 months) followed by a Neutasta shot after each infusion. I always had my infusions on Thursdays and feel fine until later the next day (flu-like aches, pains and Fatigue, etc.) and that lasted through the next day. By Sunday I would be feeling better and ready to go back to work on Monday.

I do have one helpful hint that you may already be aware of for avoiding mouth sores and digestive issues related to the chemo is to mix L-Glutamine powder in juice each morning or evening and swish it around your mouth a few times and then swallow (normal mouthfuls until you finish the glass) I think it is a tablespoon per 8 oz glass but the instructions are online on Cancer health sites-don't remember which ones now but they're easy to find. I used "Now" brand and it worked well and the taste wasn't terrible, just chalky.

I agree that a lot of how well you deal with the treatments is your attitude going in but you also need to be in relatively good overall shape (aside from PCa,Lol.) to beat off some of the side effects. While I did lose my hair (shaved it off) and I had side effects from the Neulasta, I tolerated the chemo treatments well.

Looking back, for me I am not sure of the true value of following the stampede protocol, as I was biochemically recurrent within 11 months of stopping taxotere and 7 months of stopping the Lupron treatments.

I think everyone should always review the latest clinical information out there to decide what treatment makes sense for them and their situation.

Hang in there!

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