Update on my LH

Hugs back Sue. For people who are starting chemotherapy you have provided valuable information that the experts can tailor the dose depending on the side effects but will do what they can to ensure that you complete the course.

Let us know what the oncologist says next week.

Hi Sue (Suekee ), it’s a long 18 weeks but 4 down and LH sounds to be doing very well.  Good luck with the oncologist next week.  David

Thank you David. We were worried the reduction in dose might not be as effective nut have been encouraged by supportive comments and reading that very small doses were being used in Japan.

Thank you Alwayshope.

I'm  pleased my update could be helpful to others. Will update following Oncologist appointment on Tues.

I have a few questions for him about next steps and how low LH's psa will be expected to go to indicate the outcome hoped for.

I'm  aware of that familiar territory of some knowledge (researched & gleaned from the wonderful help of this forum) but nowhere near enough for the Oncologist to assume I "know"!

Equally I'm not sure what he can tell us at the moment until chemotherapy finishes. At the first appointment he said he "might scan after chemotherapy and before radiotherapy" 

I guess I wonder what, if any  indicators  beside the falling psa, are normal to have, so I can ensure this happens.

Also is there likey to be additional drug therapy besides Prostap at this point after chemo. I am concerned about LH not missing out, given that he couldnt have Triplet therapy due to delays at outset.

Hoping all is going well for you and your husband.

Thank you for reading the this.

All good wishes to everyone

Sue

Hello Sue. I can only relate what happened to my husband after chemo and that was that the scans showed a significant reduction in the size of the lesion and lymph nodes affected. LH is going to need a scan before starting the radiotherapy as a matter of course in order to plan it. The PSA is the main indicator for a recurrence and is an effective tool for most men after having radical treatment. My husband has 3 monthly scans because he is a low secreter but this is not standard practice in the UK. Other indicators could be a reduction in bone pain and urinary symptoms if he had any but this is not quantative. 

As for additional drugs at this stage then ask the question whether adding in an ARPI might be beneficial when starting radiotherapy. In any case a conversation around the use of second generation antiandrogens could be useful so that you know what is being planned for the future.

We are still in limbo as to 'what next' but are making the most of getting about and doing the things we enjoy whilst we can.

Hello Alwayshope

Thank you as always for such helpful guidance.

We saw our Oncologist at Clatterbridge on Tuesday. 

He said he was "worried about you" after our contact following cycle 2, but now pleased with the continuing fall of psa from such an extreme high. To continue to cycles 5 & 6 as tolerance much better. Plan then will be,a break in August ,we have a planned 1 week holiday in Northumberland, then f/up with him 10th Sept with radiotherapy starting in October. Prostap to continue as expected. I asked when next scans would be, he said not until Feb as "there would be little point before." 

He mentioned 2nd generation HT saying he had those in "tool box, for much further down the line." LH was v encouraged to hear this.

I came away as I expected really, still knowing we are progressing with treatment and hoping the psa will continue to fall. It being our only indicator of efficacy at the moment.

LH has no pain, not had since before treatment. Urinary issues better, in terms of less urgency/frequency. Residual urine around the same 200 -300ml am & p.m

Tamsulosin at night has helped have 5hr stretches if uninterrupted sleep. 

I asked if testosterone had been checked & he said no at this point. 

Any comments very welcome.

Sending all good wishes to everyone.

Sue 

Hi Suekee that all sounds great and very positive.  We all react differently to the treatments but LH seems to be doing well.  Planning a holiday between Chemo and RT  is great as it will focus on something other than treatment.  Just watch for fatigue and tell him to listen to his body and keep exercising as much as possible.  David

Good morning Sue. I am glad that your plan is still going forward and yes, a holiday is a great idea if you can fit it in. Just listen to his body and still try to avoid crowds and anyone with bugs. The testosterone test is not important at this stage as the HT is obviously doing its job by bringing the PSA down. You are doing well and don't forget to treat yourself as well.

Thank you Alwayshope for your wise words and reflections as ever.

We both felt low last night,some tears flowed, reality reminders. I had read of somebody losing their fight.Similar staging and 2.5yrs of treatment. Didnt share that with LH.

We have become more confident in LH"s effects of chemo and our daily routines to keep things as safe as possible. I guess the adrenaline of starting chemo has lowered a little too and the journeyis scary, regardless of good indicators. 

We are so grateful to have treatment and support from everyone.  I think of so many not as fortunate.

LH says he "hopes chemo will have been worth it" I reassure him it is best practice etc. When it is finished it will be good to see our dear family again..Only our sons visit, to keep inf risk as low as possible, we miss our grandchildren.

Pehaps you recognise the above, a mid way slump? I'm sure it will pass. More gardening for both of us,when the very frequent rain showers stop. Reminding ourselves,we have today, therefore we are lucky.

Sending hugs to you.

Sue

Hi David

Thank you for your encouraging reply.

We are feeling a bit low at the moment. No reason or right to be. 

I'm glad all sounds positive, its good to read others thoughts. Im scared of false hope.

Thank you again for always acknowledging my posts.

Sending you every positive wish

Sue