Hello Everyone, Just thought I’d give you an update,when I was first diagnosed I was told I could have treatments A,B,C and D, welI I’m now on Plan D, for several months my PSA has been rising, and is now 27 I started at 25.1, after CT scans with and without dye, an anomaly was seen in my peritoneum which is a membrane which covers all of you main organs, part of that is called the Omentum which the area around the tummy button.
Since then it has been confirmed that this is due to further metastatic spread and is the reason for my PSA going up.
The Hormone tablets have been stopped as they are no longer working so good by plan A,B,C, Plan D is Docetaxel chemo plus 2 further tablets. The first session occurred this morning 9am till 12.30 pm. I'm having 6 cycles 3 weeks apart, the list of side effects makes two lists on an A4 sheet, some don't seem too bad but the others are dreadful.
Still I’ll go with it on the hope it extends my life with a good quality, I’v been told i’m still an incurable so will just go along with it in the hope that some thing else will come along one day.
Hi again Ulls - they have a plan , and chemo isn’t the last resort either - there are other treatments that may work after that. Good luck and I hope that your quality of life is only temporarily knocked back during the 6 cycles and that you come out of the other end in fine fettle. AW
Hi Ulls .
It sounds as if you are on a similar journey to my husband who had 6 cycles of Docetaxel last year after first having RT at start of journey in 2020 and being taken off Enzalutamide after it stopped working. We found it useful to keep a diary of his symptoms whilst having the chemotherapy because this gave us an idea of what to expect in future cycles and meant we could plan to do things on good days and rest on bad days. I took his temperature twice a day to make sure he didn't have an infection, plus blood pressure and oxygen sats - fast action is needed in case of sepsis. If you feel unwell you must seek urgent help. Generally we adopted COVID like precautions such as wearing a mask in crowded places, avoiding anyone with a bug, washing hands frequently. Hubby didn't get all the possible side effects but he did get some. ALL his hair started falling out after about 2 weeks but we had taken the precaution of having his head hair cut short before treatment started - if you have hair one tip is to cover your pillow with a towel so that you can just shake it out every day. He found that his worst days were 2-5 after the infusion when he felt as if he had been hit by a train. Things then started to improve and he felt like pottering around after day 10. He went right off certain food and drink so it was trial and error to find out what he could eat. How you react to the chemo is different from person to person but it is important to tell the doctor all of your side effects before your next cycle because they may need to adjust the flow rate or dose, or may give extra supportive treatment to help reduce some of the side effects. The Chemotherapy did it's job in killing off most of the mets which in my husband's case were to distant lymph nodes plus an odd area behind the pancreas but some little blighters persisted hence his recent SBRT which I suppose you could call plan E. We are assured that there are still further options for hubby so plan F G H and I.
I hope you don't get too many side effects with the chemo but please come back with any questions if you are at all worried or want more information.
Eh up Ulls
Thanks for the update and a very positive post - good luck with the treatment and try not to hog all the side effects - leave some for another patient!!
Keep up the fight you are amazing.
Best wishes - Brian.
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That is a rare one Ulls. It wouldn't surprise me if you don't make it into the scientific literature.
Hello Ulls, thank you for updating us. Sorry to hear you are moving to plan D but sending every best wish possible to you for a smooth journey through the chemo and every success in dealing with the PC. I knew your rising PSA was causing concern so I’m pleased that your medics are dealing with it!
take care and sending a big hug x
Hi Ulls,
Good to hear from you with the update. It's amazing how they can actually find something like this and also that there is a positive plan of attack to crush it . Like eddiel says there's a few people here ducking and diving the next steps and it's good to hear about the excellent treatments that are offered along the way. Hope the side effects are low for you and you get through the next few weeks with minimal problems. Please keep us posted on how you are doing.
Lx
Hi Ulls and welcome to the plan D club. Similar journey to you. Taken off Enzalutamide because it was proving ineffective. PC has spread to bones, liver and kidneys. Finish my chemo at the end of July. Interim scan showed PC had stabilised, which apparently is as good as it gets. I was hoping for some shrinkage
For the first week after each session, I feel like s***, then things get a little better. Are you having to inject yourself? Not pleasant but you just have to get on with it
My plan is to keep going until they find a cure!
Ulls, sorry to hear your problems, my husband is having the same chemotherapy and he is doing ok so far, only not feeling right for a few days but back to his normal self this last week, he start his second treatment on Tuesday all being well with his bloods. He did become neutropenia last week but was given 5 days of injections that he did himself.
Good luck with it and I know not everyone is the same but our grandson have very little side effects with his leukaemia chemo.
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