Hello again!

Hi Sue, my husband is also currently on his second round of Docetaxyl (day 14). Personally I think it’s good for my husband to keep active and do “normal” things but I totally understand your concern about overdoing it. I was concerned that my husband was pushing it, and he actually blacked out for a couple of minutes after power hosing the patio on day 2 of this cycle (the strong steroids made him feel invincible!) He was also nervous about me calling the helpline and was worried they’d say go to A&E after he blacked out but I insisted. They were very helpful in talking it through and reassuring me! They explained that it’s good for him to do things, but he needs to be sensible, listen to his body and rest when needed - and just said he’d clearly just overdone it and needed to be more careful. If you have any concerns, from my personal experience, I’d say call the helpline and it will hopefully put your mind at ease. Sending love and strength xxx

Hello Anna42

Thank you so much for your swift reply.Your husband sounds similar to mine, he too has jet washed the patio, only in the first week of his first cycle.The steroids create the feelings of invincibility...its hard to keep up !  Keeping active is so important both physically & mentally. I hope that today's extreme tiredness & low bp were because he had over done things yesterday.

Thank you for sharing your experience, it is so helpful.  We have agreed that if he is the same tomorrow we will call the help line.

I can so identify with the "pushing it" I have suggested we try pacing it instead!! 

Thanks again, sending love & strength to you too xx 

Good morning Sue. Docetaxel does come with a range of possible side effects and lowering of blood pressure and/or irregular heartbeat with possible blackouts are two of them. It is important to let the experts know that this is happening and keeping a record can help them determine its significance - monitor morning and evening plus if he experiences any episodes of breathlessness or palpitations. Changes in BP can be associated with low blood counts which will be picked up at the routine blood test before the next cycle of chemotherapy. Has your husband been told to inject Filgrastim for a few days after his infusion - some areas do it as standard whilst others wait to see if the white bloods need a boost. Don't be afraid to contact the experts as they will have a plan to help your husband through this.

Sending you a big hug xx

Hello Alwayshope

I do hope all is going well for your husband? Has he started his next Docetaxyl  yet?

Thank you for your swift replyand as always ,wise advice.

Yes he has to have Filgrastim  for 7 days,starting on day 3. I did wonder if this was contributing or whether it was just coinciding with his worst days. He has only had the occasional "flitting pain" in his tibia & mandible. Has not needed any analgesia at any time.

His last ore infusion blood test showed slightly high WBC & Platelet count. The nurse advised this would probably be the case each time,as on Filgrastim. 

I really think he completely overdid things on day 8, sawing skirting boards etc, during the "rough time". He has agreed that "pushing through" is neither an option nor sensible on those days and light exercise, walking etc and resting is "listening to his body"! 

He has woken this morning  "feeling a different man" back to feeling as he does on the "good days" He has noted he is thirsty for the furst time too. Likely fluid loss from sweating ++ during diy and at times yday.

I will be sure to let the medical team know.

Thank you again. Sending hugs back.

Sue

Hi Sue. Glad things look better today.

We are due to see the oncologist next Friday to discuss the next steps. Hubby's last PSA showed a slight reduction so things seem to be under control at the moment, hopefully as a result of the radiotherapy to the bone mets. It is all a balancing act but the fight goes on.

Hello Alwayshope

I hope all is going well.

My LH is still very fatigued. I contacted the help line &they spoke to him,asked lots of questions. The conclusion was that Sx will be reported to medical team,perhaps an ecg & likely earlier bloods than next Mon,which is only 24hr before planned infusion.(3rd) 

It is 14 days since last infusion,he is very tired on exertion but has short episodes of energy. He seems to slump again following breakfadt,prednisolone 10mgs & Tamsulosin 400mcgs &1 vit D tablet. Prior to taking those today, he was up at 6am making a drink etc. then slept until 9.30 for bfadt etc. 

Im still wondering if this,at this stage in the cycle,is to be expected for some people. The help line nurse did say some effects are worse on some cycles. His obs are fine, much fewer arrhythmias now. He has a tickly cough,he attributes to post nasal drip that has been since first cycle. 

I'm trying not to overthink!

Sorry to seek answers again.

Thank you

Sue

Hi Sue. A blood test is a good idea just to check that things haven't gone off balance. My husband's red bloods dropped during his second cycle to the level where he had to have Epoetin alpha injections. Chemo can result in anaemia which can cause fatigue. Also I see that LH is on daily steroids which can upset the blood sugar levels and can lead to diabetes temporarily whilst on it. The symptoms are afternoon and evening fatigue. Initial remedies are to reduce consumption of sugary foods like fruit juice, cakes & biscuits, hard sweets, sugary drinks. If the bloods are ok then it could just be LH's bodies way of dealing with the chemotherapy.

Don't forget that the chemotherapy can reduce ALL the hair on the body including nasal hair so there is nothing to hold back the drip. A pharmacist might suggest a nasal moisturiser to help.

Hi Alwayshope

Thank you so much again! Your swift reples are so very much appreciated.  As I reply LH looks so much better. At 2pm I woke again (every 1.5) to drink. He has got up shaved (what little there is now) & showered. He is downstairs &we are looking forward to our meal. Thank you for info re diabetes. He has always been prone to low blood sugar,although no Dx, when that happens,if we were out shopping and our meal was late, eating would "bring the lights back on" and he would be able to carry on again. Also I realised, he doesnt cope well with alcohol rarely drinks any, a couple of nights of of a whiskey for a cold say,and he would feel similar to low blood sugar.. .of course there is alcohol in the Docetaxyl!! Penny dropped earlier! 

I did mention to the help line nurse my ?re anaemia, his SP02 was low ish, when all other signs were good. Urinalysis nad.

Thank you again for your help. I send hugs and good wishes to you & your husband 

Sue 

Hello

I hope things are as well as possible for you.

An update on OH ,any comments would be very gratefully received.

I guess I'm still struggling with knowing what is ok. As a practice nurse my role was to assess and problem solve. I keep reminding myself that,

1)this is personal,therefore very different.    2)this completely unknown to either of us 

OH hasnt "picked up" throughout this last cycle. The pattern of the day remains the same. By afternoon he feels able to do some activity, walk, weed garden but only for a short time. After speaking with help line nurse last wk Oncologist advised additional blood test to rule out anaemia,this was, "fine" Hb 120 and possibly an ecg. His next cycle has been delayed for 1 wk and will possibly be 70% strength.

He took the f/up call for blood results & I suspect, said all was now well (as heart was regular that morning). 

He is not breathless, does have a hacking cough,especially in am ? post nasal drip,he has a lot of nasal mucus (a bit bloody in a.m)

He has had a few more episodes of dropped beats. This can happen on movement but also can settle down to a good volume /rhythm after walking. No temp,average for him 36.6. BP s'times on low side for him.

This is his 1st month on Prostap,having changed from Degaralix,I wonder if that could be influencing.

Am I just being too vigilent/investigative?

I remind myself that it is difficult to be the supporter watching/worrying which is why wonderful help is offered and chemo makes you ill!

We were hoping that in his "good week",yesterday, we could have gone to see our Gdaughter in Grease. That was not possible and we were bitterly disappointed, he stayed looked after our dog & I went with family. 

I apologise for the length of this,I know I will only relax if he has an ecg. If all is well then we can accept & manage/support  the effects of chemo.

He is so easy to care for, never demanding, always caring, except for seeking medical advice. 

Thank you again for allowing me vent. 

Sending warm wishes

Sue

Hi Sue. 

Your training and instinct will guide you if there is anything serious going on but that can cause more anxiety as we tend to overthink with our loved ones rather than being objective but, as you say, this is new territory for you. 

Just an observation -my husband has had occasional nosebleeds early morning since being put onto Prostap in 2020.

The coughing is a new one on me so keep an eye on it, particularly if he starts to become breathless. There are other things besides a PE which have been associated with Prostap and lung issues. Similarly with Docetaxel. Be vigilant with the oximeter.

Reducing the dose of Docetaxel can help improve side effects without affecting effectiveness. If all the bloods are ok then why are they suggesting LH waits for a week for his next cycle -I would query this.

Keep us posted Sue and carry on venting.