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Journey just beginning

User
Posted 13 Apr 2023 at 18:28
👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Apr 2023 at 12:44
Well today brings an interesting and unwelcome side effect, orgasm headache! Most unpleasant experience, leaving me with an immediate blinding headache that took fully 15 mins to subside a little. That will teach me to test if the equipment is still working! Suspect my blood pressure went through the roof! 😂😂
User
Posted 19 Apr 2023 at 21:45

So that's what a mind blowing orgasm does to you 😁. If you think your blood is erratic it might be worth buying a blood pressure monitor so you can check it regularly. 

User
Posted 19 Apr 2023 at 22:18
lol, thx Chris. Already monitoring blood pressure twice a day. Am sure it will have been pressure related, will think twice about any repeat performances whilst on these meds!! 😂😂
User
Posted 20 Apr 2023 at 00:50

Kerm, as you said in a previous post we now attribute all pains, symptoms etc. to cancer. I remember first time i had an orgasm related headache, about 15 years ago. Long before I had cancer or zoladex. I did feel a bit guilty, it's quite acceptable for a woman to say "I've got a headache", but as soon as the man has done the deed, and the woman is now all up for cuddles, for the man to say "I've got a headache" seems a bit mean. Still that's equality for you. It is just one of those things, it has probably happened five times since, but if you multiply 365 by 15 you will see this is actually not very common for me.

Keep your todger working, it needs the exercise, monitor your blood pressure (just in case). Hopefully you will be off zoladex in a few years and all will be back to normal.

Dave

User
Posted 20 Apr 2023 at 07:54

Try loosening the head clamps and don't use the ping pong ball!

User
Posted 20 Apr 2023 at 17:45

Thx Dave, will heed your advice! Am quickly getting used to having no dignity when it comes to my medical team, so will also notify my "symptom" at next doc or nurse meeting tomorrow. Have completely forgotten why I am seeing them, but am sure they will tell me!! You get a bit lost in all the whirlwind of appointments!! 😂

User
Posted 12 May 2023 at 14:51

So, update on progress. Had my PET PSMA Scan to look for any spread outside the local area of the prostate. Was a long two weeks to get the results, but it came back clear! So I am now officially T3bN1M0 thank god! Next steps are to continue with the HT for two more months (just had second implant/injection) and then will be Radiotherapy and Chemo at the same time. Have also signed up for the PEARLS trial, which just means a wider dose of radiation to take in Lymph nodes higher up in the lower spine area to see if that helps prevent recurrence. 50/50 chance of being in the active group or the control group. All in all, doing well and staying positive. PSA on the way down from 119 to 43 in just one month!! Learning more about myself and more about Prostate Cancer all the time, also learning to really make the most of everyday. :-)

User
Posted 12 May 2023 at 19:39

Hi Kerm 63,

That's great news - about the PSMA PET Scan, the big drop in PSA levels, and obtaining a place on the PEARLS trial.

And yes, enjoying your life is what makes it worthwhile.

Good luck to you.

JedSee.

 

User
Posted 30 May 2023 at 08:55

Thx for your reply Jed. So the next stop on this journey has been decided by my Oncology team. Docetaxil chemotherapy for 6 cycles, just in case I have micromets anywhere in my body that could surface at some point after radiotherapy (as outside the treatment area). Start my first cycle 8th June next week, and although only 6 cycles, will be on this part of the journey until mid-September! Fingers crossed it all goes well and I can keep active and working most days (at a slower pace!). Have not found any threads on here about Docetaxil treatment, so will do my best to capture the experience for anyone following along behind me! Cant say I am looking forward to it, but if it kills cancer cells I am up for it! New hairstyle here I come! 😀👍

User
Posted 30 May 2023 at 09:46

You’ll find some threads under “Docetaxel” or “Taxotere”.  I completed my chemo earlier this year and now on my last week of RT.  Similar diagnosis with spread detected to pelvic lymph nodes.  I did the cold cap thing so didn’t lose any hair.  But after chemo finished I caught a chill and ended up back in hospital for four days so while it is very doable don’t underestimate how much it knocks you by the end.  My one piece of advice is to plan something nice for yourself in the last week of recovery between cycles to keep the spirits up.  RT is just a relentless slog of going in each day.  It is like ground hog day for the seven or eight weeks and fatigue builds up.  But again, very doable and I haven’t had any nasty side effects. 
Am also on 3 years ADT with apalutamide (the drug is called Erleada) on top as per TITAN trial.  Sometimes they add an extra hormone drug to maximise effectiveness of ADT treatment and it might be worth asking about that.  Sounds like you have the right attitude which is half the battle so good luck with everything 💪

User
Posted 30 May 2023 at 10:17

Thx for the directions Jellies and for sharing some of your top tips! Rest assured I am taking notes! Will ask the question of the Ongologist as well. They are not used to having well informed patients, but so far they have been pleasantly surprised to have a knowledgeable patient and not been phased at all by my questions! :-) I have thought about the cold cap treatment, but have decided to wear my hair loss with pride and have shorter sessions in the chair!

User
Posted 31 May 2023 at 19:42

Hi you are not a fraud mate. I know how you feel been shown scan images today now waiting for ct and bone scans so know how you feel. 

Stay Strong

 

 

User
Posted 01 Jun 2023 at 12:55

Thx Roger. Am feeling strong and positive at the moment, so in a way looking forward to starting to fight back more aggressively against the cancer cells!! Good luck with your scans, one of the best pieces of advice I have read on here was from Michael. Waiting is part of the process, so don't wish the time away. Instead, spending it living every day to the full! Cheers, David

User
Posted 01 Jun 2023 at 13:04

That’s kind of you to say David.  Things going a little strangely for me just now, I am in for a blood transfusion at the moment.  I will update my post later when I know more about what is happening. 

Hope you are doing well mate 

Michael 

User
Posted 09 Jun 2023 at 10:42

So the big guns are out now, Chemo cycle one started yesterday. Thought it worth chronicling in case useful for anyone else going to six sessions of adjuvant Docetaxil Chemo before Radiotherapy. They are trying to catch any micro mets that might not have showing on my clear PET PSMA scan.

So preparation was called for, blood test, meeting with Chemo Nurse sister and consents all signed. Even had a tour of the day unit to reduce any nerves! All between Monday and Wednesday this week (along with next Zoladex implant).

Packed a bag yesterday morning containing drinks, snacks, pre-med Steriods (had already taken four before bed and four on waking), phone, earplugs, iPad, book, hat (for wet Cold Cap hair afterwards) and of course wore comfortable clothes as per instructions. What I forgot was conditioner for the hair (they had some so lucky there) and a headband (yes a girls one) to keep the temples warmer and relieve the cap tightness when inflated with water.

After some consideration I opted for the cold cap not out of vanity, but as I am trying to keep working I did not want to wear my treatment so visibly for clients and colleagues, especially as I will be hunting my next contract soon! They took time checking my blood pressure (178 over 120, when normally 120 over 85) so I clearly was more stressed that I felt! Then we got started with the cold cap which has to be on for 30 mins before Chemo goes in. Actually it was fine for me, icy cold very quickly, especially as they wet your hair and put in the conditioner to stop the cap sticking to your hair after. I got really sting ache pains in my neck for first 10 mins, but after that everything was a ok with just some minor irritant around the edges up to all numb at 30 mins. No guarantee my hair will survive, but worth a try for sure and minimal discomfort. Music and distraction from my gorgeous wife helped to get me through the cooling phase really well. Oh and on advice from internet asked nurse on arrival if I could take 2 paracetamol to help, which she said was fine. That may have helped with the brain freeze as well so recommend. Tube a back of hat where the water come in and out pressed against the headrest and my neck, but a pillow behind the head and a reclined chair sorted that, which was essential as the cap becomes heavy over 3 hours. (they put eh chemo in slow 1st 2 times and the cold cap stays on for half an hour after as well as half an hour before). Nurses were great, even though I had to be stabbed three times to find a good vein. Drink loads for 2 days before an it will help them not have to do that to you! I did feel dizzy and shaky towards the end of the session (which was combination of the cold cap and perhaps the Docetaxil. Other patients we not chatty, but all absorbed in what they were doing which was fine with my good lady to chat with the whole time (except when playing loud music). Next post will be the after effects on the same day. I went in at 10am and was out at 1pm just for the record! :-) Feeling strong and feeling good so far!

User
Posted 09 Jun 2023 at 16:39

So, on to the rest of Day One once I got home. Some soreness in the mouth and tongue almost within an hour or two, but minor. Definitely a bit wobbly in the legs and a little dizzy for a while. Tightness in the back of the neck and a background headache (not severe). Able to do a 20 min gentle walk with the dog, fine with very slight feeling of nausea so took first anti-sickness tablet at 4pm. Appetite fine and ate normally. 10pm - 8 hours after chemo, severe upset tummy with some stomach pains as warning for half hour before. Only 3 hours sleep in two 1.5 hour stints, but woke feeling surprisingly good (steroids responsible for both the lack of sleep and the feeling ok in the morning). Only other symptom was indigestion in the night, that was quickly sorted with a pill.

So all in all Day One Chemo has been fine and Day two also progressing well. Will be going into Day three wondering when the much talked about crash in how I feel will come as the sterioids wear off. Just starting to get a little shaky this afternoon as I type. Please feel free to ask any questions about Day One and Two of Chemo, will keep posting for the full first 7 days, in case of use to someone following on (although am sure we call react differently). Cheers, D

User
Posted 27 Jun 2023 at 14:07
So that went fast! Now three weeks since chemo session 1 and I have to say that so far so good. Other than some sickness feelings when concentrating I have been able to keep working and just had to make some compromises in the first week. That said, definately been down on energy reserves. Antibiotics last week, as was developing tonsillitis and still taking them now. Had bloods done Monday (yesterday) in prep for next session on Thursday. Call today from Oncologomist to say am going to have another rest week, as liver function showing signs of distress!! Dang it!! Now have a new specialist to go see in due course, wish I could say it was the alchol, but no chance of that. Keeping positive, as should you all out there!! Wishing you all strength and happiness. David
User
Posted 27 Jun 2023 at 17:05
Left the best until last. PSA just back and in three months has gone from 119 to 1.1 - I'll take that for now! :-)
User
Posted 27 Jun 2023 at 22:09

Kerm63

That's fantastic news.  Enjoy the break!

JedSee.

 
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