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Posted 9/1/2015 1:05 AM (GMT 0)
I have my backpack filled with lavender spray, a lavendar sash, essential lavender oil. Can you tell I like the scent of lavender? My ipad filled with my favorite music, bluetooth headphones, a personal pillow that has the words NAP written on it. My wife gave me her eyemask to wear. Friends have provided a journal, an interesting book and some lotion. In fact, everything in my backpack including the backpack was a gift from someone. So I have packed all of this in so that I have those that I love and that love me close to me while I go through this process.

it will be my second treatment of my second cycle of Chemotherapy and I have decided to make it as comfortable as possible. Treatment day isn't so bad. At about day three to four is when the side effects start setting in. I am also taking neupogen for two days after chemo and so far between day four and day ten are the worst.

Neupogen causes bone pain and that lasts for about 3 days. It is severe enough to take me out and feels like being stabbed about a thousand times a minute. The steroids cause severe face flushing and this last time my face also peeled off in sheets. Then comes the flemmy mucous for about two to three days followed by a mild case of thrush ( not too bad yet). After the thrush resolves, comes the dry cough. Oh and this last time I had a bloody nose about 10 days after my treatment ( never get those). Last, is the fatigue; theres lots of it, but I'm out of shape and overweight. I am leary of starting an excercise routine for fear of lowering my resistance and subjecting me to infection. Slight Neuropathy, it seems to come and go and is nothing I cannot handle.

So if you want an idea of what Chemo feels like there it is. Nothing held back and nothing embellished. These are all well documented side effects of Chemo, Neupogen and the Steroids taken while on Chemo. Just thought you guys might to know. Oh, and I am not complaining, just providing information.

Today I feel the best and am ready once again for SPA DAY!

Take care guys.

Post Edited (Almost a 10) : 9/2/2015 5:04:51 AM (GMT-6)

Posted 9/1/2015 1:40 AM (GMT 0)
Frank would take all sorts of things to occupy himself with during chemotherapy.
Then, he would nap the whole time!

Have an easy SPA day...Lisa
Posted 9/1/2015 4:34 AM (GMT 0)
Thanks Lisa,
Its all about perspective and mindset.

Post Edited (Almost a 10) : 9/2/2015 5:05:23 AM (GMT-6)

Posted 9/5/2015 3:54 AM (GMT 0)
You are in my thoughts every day Dad, and I hope that you truly are Healing Well. If you need anything ever - just call me. Please. Don't forget about the care package that I gave you!!!

Robbie
Posted 9/5/2015 3:17 PM (GMT 0)
Your post brought tears to my eyes. I still cNt see while I type. I love you Robbie and will always cherish my early memories with you. You biys are the best thing ghat ever happened to me. Love you.
Posted 9/6/2015 5:48 PM (GMT 0)
Hey Almost a 10,

I too just finished my first round of chemo (Taxotere), mine was just over a week ago. I decided to go forward with chemo while I am still responding to first line HT despite having reservations back when I was first diagnosed in March 2014 but as more and more info on the CHAARTED trial comes out I decided to go forward with it while I was still hormone sensitive. I recently saw Dr. Myers in VA and he concurred and recommended chemo and changed my Casodex to Xtandi as well - seems that there is a recent Phase 2 trial that showed Lupron, Xtandi and Taxotere had in his words "spectacular" results. You can check out my Signature for all the other treatments I had and am on.

So I took the plunge, knowing possible side effects of chemo but really not knowing how it was going to affect me personally since it hits everyone differently. First couple of days not too bad, some fatigue, some brain fog although I had a chest port put in the day before chemo so it could be some leftover anesthesia. My tongue and mouth peeled and were pretty tender, food tastes different but I still have an appetite and have had little or no nausea. My lips feel like I they have been sunburned and peeled. I continue to rinse my mouth 3 times a day with a half tsp of salt and half tsp of baking soda in a glass of warm water to help prevent mouth sores - seems to be doing the trick.

Days 3-5 lived up to their reputation of being the worst days so far - a lot of bone pain and felt like I had a pretty bad flu. Spiked a fever on the 3rd night, fortunately it did not reach the point where I had to head off to the hospital then it subsided.

Days 6 and 7 were pretty decent, I felt better, a lot less bone pain. On day 7 I had blood work done and it showed my white cell count almost nonexistent. I have to really be careful about getting infections or being around crowds. I received a shot of Neupogen and had 2 subsequent shots yesterday and today. My doc advised me to take Claritin 24 hour non drowsy formula to help with bone pain. I had read about this as well. That together with Ibuprofen seems to be keeping the bone pain in check, which I am glad for, bone pain after chemo has been the worst SE so far and I didn't want to go back to being in that state.

***Ask your doctor about Claritin, and I read that Ibuprofen and not Tylenol is effective for pain relief from Neupogen and Nuelasta, I'll be getting Nuelasta after my next infusion a week from Friday. The Claritin/Ibuprofen combo seems to have really done the trick for me.

I too have experienced some Neuropathy, my feet are a little numb first thing in the morning and when I am laying down in the evening I've had stabbing pain in my feet. Ibuprofen seems to help.

I have continued to work at home through it all, and continue to exercise daily just like I was before I started chemo whether I feel like it or not. I take a brisk walk daily for about a half hour or so and break a sweat, I always feel better afterward. I've read this not only helps with fatigue but helps the chemo work better by improving blood flow to the tumors which have notoriously poor circulation in them. If I'm going to endure the chemo I want to get the maximum effect from it. Today I'll get back to my weight lifting program which I had to stop because of the chest port being put in. Again, I have to really push myself to do this some days but I always feel better afterward. I do a series of exercises using dumbbells and a bench.

Good luck to you and let's stay in touch as we both go thru this, hopefully when we come out the other side it will be worth it. I found myself back on one of the rough days laughing to myself and saying "and to think I volunteered to go thru this". But as a G9er I feel like I've got to hit it with all I can while it is in a weakened state from HT. Dr. Myers hopes I can reach a complete remission by doing so - that's my goal.

In the meantime hang tough, if you would like to share email addresses I'd be happy to.

Ed
Posted 9/7/2015 3:45 PM (GMT 0)
Hi Ed,
Thanks for the reply. We seem to echo about the same side effects from the Chemo. I agree the bone pain is the worst, however the second time around was easier to take. I still felt the pain but I think I knew what to expect and it helped me cope with it. Still takes me completely down between day 4 and 7. I started feeling better yesterday afternoon and ran myself a bath which I never do. It felt so good just to lay in a warm bath for a bit. After that, I felt much better and was able to leave the house for a while. Still lots of fatigue from the bone pain but getting better.

The neuropathy is intermittment and seems to get better the closer I get to the next treatment. I feel a little numbness. My toungue and mouth did not peel but my whole face did during the last treatment. I haven't noticed issues with my skin so far but am keeping close eye on things.

My Doc did mention Clariton and I should have picked some up but like many things, life just gets in the way. I am going to run and pick some up this morning.

For me, the Chemo was the only choice at this juncture. My urologist recommended Salvage radiation after surgery but my Medical provider refused because I already had surgery. Issues about being systemic and to much damage to the pelvic bed. At least I got a referral to a medical oncologist but that was after insisting that I still needed treatment. Let's hope for both of us that this knocks the beast back down for a while.

I would absolutely love to keep in touch. I have changed my signature to show my email address. Feel free to contact me anytime. Take care.
Posted 9/7/2015 4:31 PM (GMT 0)
Good luck to both of you guys,
@almost a ten, your exchange with your son touched me to the core, being a father of a great young man myself.
@Ed, thanks for being a front runner in going HT + Chemo, you are likely helping so many others in the fiputure by being aggressive and helping yourself now
Posted 9/8/2015 11:21 AM (GMT 0)
Thanks Prato,
My boys mean the world to me. I was especially touched that he took the time to see what we all are going through. Despite my many mistakes they grew into wonderful men.
Posted 9/22/2015 2:34 PM (GMT 0)
Today I begin my first treatment of my third cycle of Doxetaxel (Taxotere)/en.wikipedia.org/wiki/Docetaxel. For the most part, I believe that I am tolerating it well. Most of the side effects that I experienced in my first two treatments have mostly subsided. Some of the side effects that I continue to experience are Flushing of the face however my oncologist believes that this is a harmless side effect. She did however suggest that I reduce Dexamethasonewww.drugs.com/dexamethasone.html to a half dose. So instead of taking two 4 mg tablets twice a day on the day before and day after, for this treatment I only took one 4 mg tablet. Lets see how I react post treatment.

A new side effect that I experienced was a rash around my neck. It began around the area where my port was installed and travelled the full distance around my neck. I watched it closely for signs of infection but nothing really remarkable. I started applying peroxide to the area multiple times during the day but this caused my skin to dry out so I finished the application with lotion. I have since noticed that my neck, and arms have become more sensitive to light so I have started applying sunscreen on a daily basis.

As far as Neuropathy, I am not sure if I am experiencing any. My fingernails have become a little sensitive and I have noticed that my fingernails seem to be hemorrhaging around the center of my index, center and ring fingers on both hands. I will talk with the oncologist about this today.

Last, I experienced a sty in my eye that lasted for about 10 days. Because this is a bacterial infection, it caused my neutrophils to be slightly higher. Hope this doesn't bump me from Chemo today. I will bring it up and lets hope that the doc doesn't mind.

Chemo crash is still hard to take. Happens about the Friday after treatment and lasts until the middle of Sunday. My oncologist and Ed suggested that Claritan. Still need to pick it up. She also prescribed Norco which I did not know was also known as Hydrocodone. Haven't tried it yet but if my homeopathic remedy does not help, I think I might give it a try.

So other than being a little more tired, I think I am handling it quite well. Lets hope this will knock the beast back and give me a few more years. : tongue yeah
Posted 10/2/2015 8:02 PM (GMT 0)
I get to enjoy my first day at the spa on Monday. I feel as prepared as I think you can be thanks to the many great posts on here describing the event.

I'm excited to get this chapter started...well, as excited as one can be under these circumstances.

I will have the iPad all charged. It's loaded with music, and my Amazon Prime account is ready to stream old episodes of Silver Spoons, Night Court and Cheers. Will stock the fridge this weekend with cases of bottled water.

Thanks again for all those that have endured and shared their journey....it makes it more manageable for us coming after.

Jordan
Posted 10/3/2015 4:23 AM (GMT 0)
Hey Jordan,
You have an amazing attitude. Enjoy you spa day. Its a few hours where you have no other outside demands. Enjoy!
Posted 10/5/2015 12:03 AM (GMT 0)
Hello Almost A 10,

Just wanted to wish you well as you continue your treatments --- I've been down "CHEMO ROAD" last fall, so I am sending you all my best wishes along the way ---

It's a day-by-day journey --- step-by-step you get there --- and soon enough, your treatments will be finished --- you have to stay determined in the middle of it all --- and keep forging ahead ---

We are ALL here to support you --- just wanted to let you know I am thinking about you --- wishing you well --- and truly hoping you see some positive impact from your treatments ---

We have to do everything we can do to take ourselves further down the road --- an important thought that was shared with me was that the chemo treatments are killing some cancer cells that other treatments can not kill --- so I kept that thought with me on days when I needed a little encouragement.

Keep facing forward --- keep forging ahead --- stay determined --- and thank you for encouraging others by sharing your posts.

All my best to you,
Cyclone
Posted 10/5/2015 1:20 PM (GMT 0)
Hi Cyclone,

Thank you for the well wishes. It's good to know that others have been down that road and have done well. I agree, it is a day to day journey and certainly not without it's little bumps along the way. But for the most part, I am tolerating it very well. I am a week out of my second treatment of my third cycle and looking forward to meeting with my oncologist to see what my numbers are. She is running a PSA test before each treatment to see how it's trending. I kept an excel spreadsheet of my PSA history and will eventually add a timeline to show when and what my symptons were as well as treatments. You can find it here /onedrive.live.com/redir?resid=AE2DB04F92FA1645!393&authkey=!AIkDpiUdLlDlv4E&ithint=file%2cxlsx

Your support as well as the support of others means the world to me. This is the place I can go to and share things that I can't share with the people I know because it's either too hard for them, they don't understand, or don't care.

I believe that mindset means everything and any thought that puts me in positive state of mind is where I want to be and yes, the chemo is killing some if not many of the cancer cells. My PSA chart tells me so.

I will keep facing forward and learning from everyone here. Your posts are filled with wonderful information and are so detailed that I am at a loss for what to say, but I will say to you as well "Keep sharing your stories". They give people like me and others hope and inspiration.

Thanks again for the post and likewise, my best to you too.

Robert
Posted 10/13/2015 10:28 PM (GMT 0)
Today was somewhat disappointing. Although SPA DAY was good and went just fine, the results of my last PSA test wasn't so great. It seems that my PSA increased from 9.7 to 10.4 over the last reading. The oncologist did not seem too concerned and suggested that we see what the next treatment on November 3rd brings. In the meantime she is ordering a new Bone and CT Scan. I hoped that my PSA would have dropped another 5 points. I guess I was too optimistic.
Posted 10/13/2015 10:44 PM (GMT 0)
Dear Almost A 10,

First of all, glad that your treatment went well today for you. You are making progress in your series of treatments --- you're right in the middle of them --- having been a traveler down this road, I know it helps to have a little support right about now --- but you are getting closer to having your treatments all completed.

You've got all that experience and insight now and I know you will be able to support others who join us when they get started walking down "Chemo Road" ...

Meanwhile, yes --- I know how it feels when a PSA climbs up --- I've been there --- I've lived it --- and I know how you feel. I've got a friend in this that often says to me, "Why do I feel like I have to live my life based on that number all the time?" When the PSA goes up, our emotions go down ... when the PSA goes down, our emotions can soar. It's like living life on a roller coaster sometimes --- and learning how to maintain a balance while riding on that roller coaster.

You've got some treatments left --- some more chances for the chemotherapy to keep taking full effect --- more chances for it to keep attacking the cancer cells.

I just wanted you to know that you have my ongoing support --- I always read your posts and I continue to wish you well. We're all right here for you, going forward. I'm glad your treatments have gone well for you so far. Please keep us updated on your progress.

Thanks for being a fellow traveler on this road with me.

Sent with my best to you,
Cyclone
Posted 10/14/2015 12:57 AM (GMT 0)
Cyclone,
Thanks once again for your thought filled Nd supportive response. It is difficult to live by that number and no matter how hard I try the number looms in my head like as if it were some sort of scorecard.

And then I read yiur comment; someone whos been down that road. Someone mwho has survived it. I find hope and inspiration. I do tey to give thT hope to oers who are just joing this fight although i must say p, i find it hard to be as eloquent and uplifting as you. We all have out iwn style right?

I havent given up , and I never will. I love living too much. Living doesnt have to anything spectcular. Just waking up each day to a new sunrise. Seeng the full moon. Spending time with my family. This is what I find special. Each moment. I wont give up on that.

Thanks for your oost. It always brighhtens my day.;
Posted 10/14/2015 2:30 AM (GMT 0)
As someone walking the same path, I completely understand your feelings. I was just thinking today how my life has changed and I can't think of a time where PCa isn't somewhere in my thoughts. Maybe buried down deep but it's there. We now live a Vegas life, it's all about the numbers.

But I loved your last paragraph where basically you said oh love life. The little things, and especially family. That is why you will succeed. That attitude right there will get you through to your next PSA test. I'm calling below that magic 4 number for you. That's my prediction. Remember, maybe the chemo is doing such a great job it's killing off the cancer, releasing PSA as it dies. So next test is going to be a number to be proud of!!

Best of luck to you and glad you are handling spa day so well. I return to my spa in two weeks!!

Jordan
Posted 10/14/2015 5:45 AM (GMT 0)
Hi guys
Gary and I have been living on that roller coaster for five years now, and every day he is feeling good I say a little prayer of thanks and am so happy to have another day together. On the days he feels really sick, I think "why does this have to be so hard and why is it happening to such a good person?" It's a hell of a ride, but the alternative is worse. I had lunch with a friend today whose husband died of heart attack 7 mos ago in his early fifties. She is still unable to talk about him without choking on tears.
Hang in there with the chemo guys. The good days trump the bad. I wish you all many more good than bad as you go down this road.

Jordan, you can see by Gary's Sig that his PSA started high (not as high as you...that's just crazy high ,man) and he often says that he had never felt as bad as he did when finally dx'ed. Even on chemo. So good to see the mighty drop. Good sign that the mets are getting under control. My bet is you will begin to feel better each day. Loved your blog. Hope you spend lots of time with your family. We went on AK cruise with ours after Gary's dx and it was the best thing we have ever done.
Sorry rambled on...
Beth n Gary
Posted 10/14/2015 1:37 PM (GMT 0)
Hi Beth!

Yeah, it was crazy high, and honestly I completely relate to what Gary said. I never felt worse than right before DX. Almost immediately after starting treatment I began feeling better. Thanks for reading the blog, it really is a great outlet for me to just open up and release.

Hope Gary is going well...being similar I always like keeping tabs on how he is progressing. Keep fighting and you'r in my prayers....

Ramble on any time you like!
Posted 10/14/2015 10:01 PM (GMT 0)
Jordan,
Thanks for your post. We are all brothers in this fight and the best way to fight it is with e support of others. I hope you had amgood spa day and that the side effects were tolerable. It is kind of a nuMbers game vegas style. Alwas gambling with treatments hoping one is the magic bullet thT will knock this beast back.

Beth,
I happen to love Roller Coasdt but this one was one I never intended to board. But since I am here and on board, i am glad that I can share this ride with others. And you are so right, good days always trump the bad.
Posted 11/16/2015 1:18 AM (GMT 0)
Time for my third spa day tomorrow. By now I feel like a veteran. Luckily have had small side effects.

I write this, mainly as a bump, to anyone just beginning a chemo journeys this thread is a road map for your journey!! It will also let you know you aren't alone!!

Hoping that Almost a 10 had a nice recent spa day and had a better PSA test. If you already posted sorry I missed it
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