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Author Topic: Bolt out of the blue  (Read 14114 times)
Lindsey
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« Reply #30 on: May 21, 2012, 06:30:25 PM »

Hi again, and thanks to everyone for their replies to my last post. I'm sorry it's taken so long for me to respond, but I'm pleased to say it's because I've been enjoying myself too much (I had a lovely holiday in the sun) and I've not had time to visit the forum.

Alison, thank you for your message of support, especially given your personal circumstances! Shocked You certainly found out about the brain tumour the hard way... I hope that you're recovering from this incident and that your chemo isn't too debilitating? I echo Karen's words about you being a remarkable lady  Smiley

Karen, I hope your Capecitabine and Avastin treatment is going alright - thank you for your support. And, Hazel, I hope that combo is working out OK for you too!

Suze, thanks for your travel tips - they came in handy... Mum and Dad threw caution to the wind, bought a bottle of Vicks First Defense nasal spray, procured a surgical face mask from the dentist, hopped on board a plane to France, and, err, forgot to mention it to the oncologist! I hasten to add that their decision to leave the country was not brought on by Suze's tips for jaunts away from home, haha! Anyway, luckily, they had a blast - they stayed with a friend who lives out in France, the sun was warm, and the food and drink plentiful. They returned home feeling refreshed and it was a real psychological boost for them both. Yes, they broke all the rules, but they seem to have got away with it.

Dad's side effects are getting worse, as you would expect after six months on 5-FU, oxaliplatin and Avastin. Tiredness and fatigue means he must take regular rest breaks, and peripheral neuropathy is now at grade 3, meaning his hands and feet are affected and he's occasionally dropping things or having difficulty with small buttons. Dadís not yet lost all of his hair, but it has thinned, and we can expect this thinning to continue whilst on treatment.

Today, we got his latest CT scan results, and I'm pleased to let you know that his tumours have responded to the last three months of chemotherapy and have reduced in size by a further 20%. This means that in the last six months of treatment, his tumours have reduced by 33% overall. The oncologist said this was good news and was pleased with this result.

Dad was presented with three options as follows:
1.   Continue for another three months on the same three treatments, knowing that the side effects will worsen
2.   Continue for another three months on two of the treatments (5-FU & Avastin) to reduce some of the side effects
3.   Have a three-month break and then reassess

After much debate, Dad has decided to have a short break from chemo (missing one treatment) and then recommence with all three treatments on 6th June. We are holding the second option in reserve, so that if side effects become intolerable after a few cycles, he can stop the oxaliplatin if needed.

After these next three months on treatment, Dad then plans to take a three-month break from chemotherapy and have a long holiday abroad with the oncologist's blessing!

We are pleased with the results of the CT scan, but also know that continuing with chemotherapy will be hard. We're coming to realise that the decisions are always going to be difficult, and there won't always be an obvious choice when faced with options. Nevertheless, we are grateful to have options!

Tomorrow, the multi-disciplinary team are going to assess Dad's case, so that the surgeons have chance to cast their eyes over his CT scan results. We aren't expecting that surgery is going to be an option for Dad, but at least we'll get a proper indication later this week.

Thanks again for all your messages of support - Mum and Dad read this discussion board and are very grateful to you all  Kiss
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suze
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« Reply #31 on: May 21, 2012, 06:36:07 PM »

Thanks for letting us know how things are going on.

It is good that your dad is being offered choices and he is making plans to have fun in the summer .. always good ..

your description of their jaunt to France has whetted my appetite, and all being well we will be there in August ourselves.

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« Reply #32 on: May 21, 2012, 07:09:41 PM »

Thanks for the update Lyndsey and the good wishes.

It's very difficult making decisions when you have options and when you have no idea of the outcome of any of these options. My oncologist never really helps me to decide, just gives me the options and says I can't make the decisions for you. (Yes, I know he can't, but he knows my situation and could give an opinion!)

Oh, a holiday abroad, and some sun, how I yearn for that, but I'm on treatment till the end of July, then re-assess and maybe another 3 months of treatment. So do we go at the end of July at the dearest and hottest time, when all the school kids are off, having taught and worked in schools all my life, when I gave up work, it was going to be great to holiday with adults and at a cheaper time, cancer has other ideas for me, another kick in the teeth, all my chemo lines have ended so that holidaying in July or August have been the only option. Would like to have a break after 3 months to recharge the old batteries..... we will see!

I wish your Dad well for the rest of his treatment and don't give up on surgery, including RFA, there was an excellent talk at the recent patients day, saying always ask for a second opinion especially if the tumours are on the liver and RFA is developing all the time. This site may be of interest to you, Alice Gillams will undertake RFA where others 'fear to tread'. I know I will be seeking her out if I need to! http://www.rfablation.co.uk/

Good luck and best wishes to all the family, i know you will keep us updated!

Alison
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« Reply #33 on: May 21, 2012, 11:10:46 PM »

Thanks for the update Lindsey.....i had two lines of oxy and decided not to continue myself, since then i have had 3 lines of avastin and cape on it's own with the cape dose increased which has dried up my hands and feet and the colour makes them look like i haven't washed!! my scan last week indicated that the tumours had not increased and that the lungs mets may have got slightly smaller! I have to say that Avastin and cape on their own are far easier to manage, not finding too much trouble at all....though bloods do dip more than they used to.
Good luck to your dad.
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lilianwiles
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« Reply #34 on: May 22, 2012, 02:34:23 PM »

It is good that you have a clear plan Lindsey, even if the options do seem a little limited, and I am pleased that your dad's team are being so supportive. Do keep in touch and let us know how things go on with him, and for you and your mum too.

With best wishes, Lilian
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Lilian Wiles
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Lindsey
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« Reply #35 on: July 25, 2012, 11:52:14 AM »

Hi everyone,

Thank you for your continued support! Alison, hope you're feeling alright as you get towards the end of your treatment, and Hazel, glad to hear your treatment has halted the growth of your cancer. Suze - fingers crossed for your trip to France!

Dad has now had three out of the six planned chemotherapy treatments since the beginning of June. As expected, the side effects have become harder. Fatigue continues to prevent him from doing all the things he would like to do; however, his activity levels are still pretty good. Dadís out and about most days, doing jobs and meeting with friends and family. He's holding on to his hair as well! Dad's weight has remained constant and heís able to eat full-sized meals without too much difficulty.

Peripheral neuropathy (tingling and numb hands and feet) is getting worse, and heís now lost sensation in his fingertips, which makes fiddly tasks much more difficult. The oncologist suggested reducing his oxaliplatin dose by 25% for his third cycle, but there was no improvement in his side effects.

Then, unfortunately, when his fourth chemotherapy cycle was due, Dadís blood test results showed his immune system had taken a battering, and his treatment was suspended until his white blood cell and neutrophil count recovered. Today heís been told he must have a second weekís break because his blood test was still low. Dad is understandably frustrated and disappointed; he wants to keep on with the treatment, but it seems his body is telling him it needs a break. He's finding it hard to weigh up the pros and cons of treatment side effects versus quality of life, and he's got such steely mental discipline that he would continue with the chemo if the doctors would let him. However, the reality is that he's had 8 months of 5-FU, Avastin and Oxaliplatin, and his body seems to be saying 'enough' for the moment.

I forgot to update the thread earlier to say that the multi-disciplinary team said 'no' to surgery as his disease is 'too widespread'.

It's not all doom and gloom, though. Mum and Dad have booked a holiday in Tenerife in October and are very much looking forward to meeting up with their pals and soaking up the sunshine. They're currently keeping themselves busy having the house decorated, and at the end of May I went down to Watford with them to go to the Making of Harry Potter Leavesden Film Studio tour which was amazing! We're all in reasonable spirits, despite the setbacks.

Dad's taking aspirin and curcumin (with the agreement of the oncologist) and has now read an article on the benefits of eating whole lemons (frozen and then grated onto food). Has anyone else heard this? Do our Beating Bowel Cancer nurses know if it's been proven, or is it just one of those newspaper headlines with no substance?

Best wishes to you all - Mum and Dad still visit the forum and pass on their warmest regards.
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wikey
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« Reply #36 on: July 25, 2012, 12:27:37 PM »

Hi Lindsey,

just read your latest post and had a flick thru some f the previous ones. just want to wish you and your mum and dad all the best for the future.

  i am 64 in a couple of weeks and last autumn was diagnosed with a stage 3c tumour rectal sigmoid colon area. it had  enlarged some lymph nodes but not spread to other organs.  i had combined chemo and radiotherapy  and then an operation in May this year.
the treatment wiped out my tumour, but dont know what % of that was due to radiation. i have just started chemo again, my choice,  my oncologist was rather  old fashioned expected my to just do as i was told.  i  have a physics degree and i am used to analyzing things and being logical about decisions. he told me  he dint think i should bother having chemo. but he couldnt tell me that the tumour had not spread  even though nothing was visible on the scans
so i am now on capecitabine monotherapy as i dont want the neuropathology from the Oxaliplatin.

hopefully your dad will continue to improve and he should not worry about having a week or two off from the treatment.

as the autumn and winter come along perhaps he could get an exercise bike in the house   and then wont have to go out in the cold or go to a gym with lots of other people and risk catching infections.

best wishes

mikey
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Holly
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« Reply #37 on: July 25, 2012, 04:58:41 PM »

Hello Lindsey.

I am intrigued to hear about this article on lemons!

I must admit is it not something we have heard of here in the office (I've asked around) but we do love to learn about new 'possible' treatments.

On a serious note this is not something that is being trialled or even used by patients in the UK, so feel free to enlighten us.

Many kind regards to you and your Dad.

Holly

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Holly Rolfe
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Lindsey
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« Reply #38 on: July 25, 2012, 05:31:12 PM »

Hi Holly, I've posted a topic in the Bowel Cancer Treatment forum called "The Whole Lemon!" with further details.

Wikey, thanks so much for your reply and whilst I'm sorry to hear of your diagnosis, I'm glad that your treatment has been progressing so well. You and my dad are the same age, and my dad is an engineer. By the sounds of things, you and he think the same way, and I can just imagine him insisting on chemotherapy if he were in your position! Good luck with your capecitabine treatment  Smiley

I've just come home from lunch with my parents, and we've chatted about the pros and cons of short breaks. Dad may even consider taking his intended three-month break from treatment earlier than planned, but it all depends upon the conversation with his oncologist on Monday!
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Hazel
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« Reply #39 on: July 25, 2012, 09:34:47 PM »

Thanks for updating us Lindsey hope your dads count come sup soon and he can get on with the chemo,
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You never know how strong you are until being strong is the only choice you have!
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Below is a bit about me and bowel cancer
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Lindsey
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« Reply #40 on: August 08, 2012, 02:55:39 PM »

Thanks, Hazel. Nice to hear from you  Smiley

Just to let you know that my dad decided to take his three-month break from chemo earlier than planned, effective immediately. His oncologist agreed it was the most sensible course of action, and I think it's the right decision too.

On Friday last week, his blood test results finally bounced back into the 'normal' range, although his fatigue and peripheral neuropathy haven't improved significantly. For the last couple of days, Dad's noticed a slight improvement in his stamina, so we're expecting slow but hopefully steady progress. He has another CT scan next week and a consultation with the oncologist the week after, where the length of the break will be properly agreed.

In the meantime, we're wondering when it might be safe for him to resume former activities such as going to the cinema and theatre? He had his last infusion on 4th July. I'm assuming it's six weeks from the date of his last infusion, which is what the oncologist said when asked how soon he could go abroad on holiday...
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wikey
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« Reply #41 on: August 08, 2012, 03:11:37 PM »

hello Lindsey,

interesting to read your dads  side effects. i am on  capecitabine only but double the dose i had  when it was part of the combined treatment

i was expecting to get  the sore hands and feet ( fingers and toes ) like i did last time when i was have chemo and radiotherapy at the same time.
but i have not got this  really,  but i have got a sore scalp and also the soreness around the  edge of my nostrils. not too tired  but everything else seems ok. 

hope  the chats with oncologist go wll and he gets on holiday!

cheers
 best wishes
mikey
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Lindsey
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« Reply #42 on: November 04, 2012, 04:57:40 PM »

Hello to all you lovely people - I hope the last few months have treated you well?

Our family have been busy getting on with life and have even managed to achieve something resembling 'normal' - away from the constraints of hospital appointments, chemo, scans and results. It's been good! My parents made it to Tenerife for the whole month of October (sans insurance for cancer - ridiculously expensive!) and had a wonderful time.

Since Dad took his treatment break back in July, he's made steady progress. The holiday abroad has been a real boost - plenty of time spent walking and building his stamina, which culminated in him spending a whole day with the grandkids in a water park, having a blast! Hair is growing back without any problems and his fatigue is much improved; the only remaining side effect from treatment is peripheral neuropathy, which is much improved but still present. Now that they're back in cold and windy England, the numbness seems worse!

I turn 40 next weekend, so we're off to a posh hotel near York to celebrate with my parents - it's the best birthday present I could have hoped for - a year ago we didn't think he'd make it this far - to have my dad fit, strong, relatively healthy and able to enjoy himself makes the pain of his 8 months on chemo seem worthwhile Smiley

We go back to the hospital at the end of November for scan results and a decision on the next round of treatment. As the 5-FU, oxaliplatin and Avastin have continued to work, I'm wondering if he'll be back on the same cocktail... I suppose it depends on the assessment of his peripheral neuropathy and the funding for Avastin...

In the meantime, Mum has to have an operation on her shoulder and have her arm in a sling for 3 weeks, so Dad will get to look after her for a change!

It'd be great to hear from you all, and I'll update again when I've more news.
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« Reply #43 on: November 04, 2012, 07:38:30 PM »

Hi Lindsey, your Dad is doing so well and getting on with life which is good. I am reminded of the advert there is on the tv where they say 'living with cancer' that is what we have to do, live and enjoy every moment we can.xx
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« Reply #44 on: November 06, 2012, 09:55:37 AM »

Hi Lindsey. It's great to have such positive news. I totally understand about 'the best birthday present you could have hoped for'. These milestones are a cause for great celebration and the sense of joy they bring are often a great antidote to the traumatic periods we all experience.  Have a fab birthday and relish every moment together.  Grin
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