Not unexpectedly, I’ve been hit with the news that my team wants me to go back onto chemotherapy - Carbo/Caelyx, starting on 10th July (my Ca125 is now 426). Because I have a holiday booked for 20th July, I’m looking for some wisdom and advice from you lovely forum folk about maybe delaying my teatment until I’m back - I know what my consultant will say, but I’m having very few symptoms and am feeling more energetic than I have for a long time. Because my new cocktail contains Caelyx, the advice is to not go in the sun - it will be a shame to have to be in the shade whilst with my two very energetic grandboys.
I would be very grateful for any thoughts you may have.
I hope everyone is as well as they can be. Best wishes, Ali x
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Alifit
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Just had my third dose yesterday and it's really hard to keep out of the sun but it's doable. I use Aveeno 50 sun blocker, not available in UK unfortunately but postable from USA. Perhaps one of our US girls would oblige. I stocked up when a friend holidayed there recently. I'm one of the few bright white people in France right now. 35 degrees and wall to wall sunshine is lovely if we can sit in it. The nausea is avoided by five days of Emend instead of the normal three. Headache and tiredness seems to be the normal for me but it passes after a few days. Then I'm fit as a fiddle for three weeks.
So sorry you are on the treadmill again. I do hope it works well for you. I'll know if it's doing anything on the 11th when it's scan and onc time plus CA 125 shock/relief time. Enjoy your holiday. Perhaps treat yourself to a nice flamboyant parasol, like rather chic Victorian ladies had. Fancy one myself. There's always a spray tan, if we are allowed.
Hope you are ok for August. We'll compare whiteness. Big love xxxx
That's the spirit. I would insist on getting the extra 80mg Emend to get you past the sickness days. I know it's an expensive drug but you'll need it and that's more important than NHS budgets. I do take my amino acids again as I noticed that the neuropathy was creeping back. They work. Carbo worked well for me first time round reducing the cancer by 80% so I'm hoping for the same with the caelyx added. It will never go, I know that, but so long as I put off the inevitable for a year or so then I'll take anything they chuck at me.
Had a good night's sleep and no nausea so far. Hubby gets me a slice of toast and a glass of milk and my Emend and I have that before getting up and I'm fine. I do get a banging headache but put up with it and cope without painkillers. A sleep usually helps. If I feel like lounging around all day then I do and don't feel guilty about it. I've never been like this before and always pushed myself to get things done no matter what. It's a whole new way of life, but it's life so I enjoy it no matter what state I'm in.
Have you got lots of cream for your skin? It will get dry. Some girls get cracks and sores on palms and soles. On recommendation of other teal sisters I slap on Udderly Smooth Extra Care top to toe. Oh yes, while the caelyx goes in the nurse wraps flat sausage shaped ice packs around my wrists and ankles to stop the caelyx getting to those extremities and causing the problem. It's not a pleasant experience and they cover me with a duvet to keep warm but it is working. Hands and feet fine thankfully. I don't think the NHS can afford ice but you may be clever enough to make your own and take them with you. One of the girls in Germany does this. So worth the effort so please try.
If I can think of anything else I'll post. Details of venue for August to follow when son returns from holiday tomorrow. Got to get sat nav correct or you'll all be going some other place. I'm famous for it. Let us know how you get on. Big love xx x
I think its a great result, because your ca125 Has fallen to within what considered the normal range following surgery. My ca125 was initially in the thousands, after surgery and before even having chemo it's fell to within the normal range. I had it checked every 3 months for 2 years and it's stayed that way. So in my opinion it can only be a good thing if you are within the normal range, I do know that this is not always the case for everyone x
If you are feeling ok and the cancer isn’t in major organs or likely to cause bowel blockage they might let you go and start when you come back. Research shows that having chemo before it’s actually necessary can be counter productive. Ask if they would consider giving you a fit to fly note... and if the answer is yes then I suggest you have your hols xx
Thanks Lyndy. I’ve had a rising CA125 since August last year but there is only a minuscule amount of disease progression. I’m going to run it past my consultantwhen I see her. The report from my recent scan want available today, so the chemo decision is pretty much based on my CA125 result and various abdominal discomforts. I will argue that there is no real evidence that I need to start immediately. I’m only going to Cornwall, so the associated problems of flying won’t be there.
Assuming it’s a two-week holiday, you’d probably be looking at delaying the proposed start by a month if you wait until you return.
There are lots of outdoor manufacturers these days offering clothing with good protection from the sun (Rohan for instance) as well as total sunblocks for exposed skin, so I wouldn’t necessarily delay because you think you cannot go out in the sun. An unknown is how well you will feel after the first chemo to properly enjoy the holiday. I’ve not had this combination but if you coped well with the carbo / Taxol before that might be a clue.
You could always come back early if you’re not enjoying it.
Only a week, in Cornwall and I’d rather lose a week off the end of this rather than miss out now!
You are right though, it won’t be the end of the world if I have to wear sun resistant clothes. I think the worry for me is that I won’t be up for the shennanagins that a week with a one and a three year old will bring - I so want to be at my best with them.
I'd have your holiday, take on vitamin D and get as fit and well as you can before you start chemo. Not sure a few weeks delay would make any difference if you are symptom free and have no threat of bowel blockage etc. See what your onc says...
I have had one lot of Carbo/ Caelyx for recurrence . I am naturally a red head so fair skin. I was in the sun on Monday , not sunbathing but generally walking about and now I have a horrendous , itchy rash so stay out of the sun . I was having a few issues before being in the sun but that has made it a whole lot worse. Jules xx
Must admit I am on the have the holiday first bench. Does your team think it is critical when to start chemo. If they have compelling reasons to start ASAP then maybe the cream and sun hat regime. Difficult call.
My scan hadn’t been reported upon today, but the consultant looked at the images and said she couldn’t see any ascites or obvious problems. The results should be available at the MDT meeting next week, I’m seeing her straight after. I think my decision will rest on the results, but my feeling is that I would rather grow a bit more cancer in Cornwall than be there with all the post chemo risks - low neutrophils etc and not being able to do things with my lovely family.
Sorry to hear that you are back on the treadmill, Ali. Hope you can negotiate that little bit of extra time. When I was on my first recurrence, I was able to wait another 4 months before starting chemo. Vicki xxx
Thanks Vicki, it’s been threatening me for a while and my feeling is that a couple of extra weeks won’t make much difference as long as I’m feeling well.
HI Ali, Good advice as usual from our friends,I'm Fair skin so staying out of the hot sun has always been a problem,keep covered and use a good sun block and a little wisdom stay out of the hottest time of the day.
Take your holiday and enjoy your family..Lorraine x
When I was first diagnosed, I had arranged to go to New Zealand to visit my son and his wife and my new granddaughter. I got my appointment through for the operation and said it would have to be delayed for at least a month until I got back. My thinking was that if I didn't make the trip at that time, I might never be able to make it. I have never regretted delaying my treatment.Jenny
Go have your holiday love, they’re important times spent with family, could you delay the start of the treatment for a couple of weeks, my consultant is a believer in holidays and has always advocated fitting treatment around family occasions is appropriate and as you’re not symptomatic maybe that would be an option for you? The holiday will do you good before starting a new regime.
It’s always good sun block for me these days ever since treatment, my skin is different to before so a good high factor sunscreen is a must and you’ll need it for your whirlwind boys.
Have a lovely break, I hope the treatment isn’t too hard on you, big hugs and love ❤️Xx Jane
Hi Alifit, i would definitely go on holiday and commence treatment when you return. My ca125 has been slowly rising over the last 2 years, and has suddenly jumped up to 519. I've just had a scan and get results on Tuesday, but I have no other symptoms and my oncologist is not panicking about me urgently recommencing treatment. Go on holiday, have a wonderful, sunny, carefree week and enjoy every precious moment with your little grandsons. xx🏖
I say go on holiday--studies I have read say delaying it by a week or two should not affect much--unless you are symptomatic then its about relieving those symptoms. I was on Carbo/Caelyx and kept to lathering myself in yucky thick cream at night (feet mostly--our bed covers now have stains from the oily stuff) but I did not have the skin issues. I also did not have sun issues--was in the sun a lot-not sun bathing and no sun block and no issues. I am saying we are all different and I would take precautions if in the sun directly for awhile but if you go on holiday before treatment, I suppose no worries right? I had no side effects from Carbo/Taxol for Frontline but did have a few not-great days on Carbo Caelyx. Was prepared-knew exactly when (treatment Friday and bad days were Sunday/Monday) and all that meant is lying on my couch and watching mindless TV--and of course, being catered to--very important for me to milk those two days as the other days, I am the rock/organizer/shopper for a full fridge/cook/cleaner/ Mom/wife/daughter.
Wishing you a great holiday and I think knowing you will start treatment when you return might actually make it an even nicer trip--plan in place and time to enjoy. oxoxxo
Hi. I just slipped away to Singapore for a week from Australia before I started chemo for my 1st recurrence. My Oncologist and surgeon said I also had minimal cancer and not many symptoms and I wasn't at risk. But CA125 went from 150 to 850 in 6 weeks and was 1100 on my return and I started chemo within 2 weeks. (Slight delay cos possibility of clinical trial which then wasn't starting for 3 months.) Had a fabulous week so if not dangerous for you go, DO GO! It has helped me alot on all levels to have had that holiday, especially as my immune system collapsed after 2 chemo's which hadn't happened on frontline, same carbo/taxol until the 9th week! Enjoy and tell us all about it when you return. Hugs from Oz.
Ho Ali. Bummer you have to go back on treatment but for me carbo/Caelyx was effective and with minimal side effects. I also enjoyed the 4 weekly cycles as it gave much more time for living!!
As far as the holiday, did your scan show any areas of immediate concern, like tumours attached to the bowel/liver/kidneys etc that may develop into an emergency admission if left for much longer? If not then I would go on holiday and enjoy yourself! 3 or 4 weeks under normal circumstances is not a long delay. If your team feel it would be dangerous to delay would they be happy with you going away on day 10 of your first cycle? If they say that's ok the good thing is, even if your holiday is for two weeks, you'll be back in time for cycle no. 2. Have a word with your team and see which option they are happiest with. I find they tend to be much more adaptable after first line.
I've just seen one of your replies Ali and absolutely I would delay chemo, as you're only away for a week and not leaving the country!! You need this before you start the long haul. The 4 weekly cycle is great but it does mean it lasts for longer. Xxx
I would postpone treatment and have that holiday. It’s all about memories and mental well being. I have done caelyx it’s not kind on skin even without sun. Best wishes in whatever you decide
Writing from holiday, having postponed starting 5th line chemo by a week to get away, No regrets. Holidays are very good for the soul, even if it's a bit too hot at the moment. Go for it!
Sometimes we have got to do what we think is best! I would ask if it would make any difference starting three weeks later than planned and if it wouldn’t go for that holiday and enjoy every minute. X
I believe if you can delay for a little while go for it! Gives your body a break a fabulous time with family and then deep breaths for the Caelyx and Carbo.. I finished that regime a few months ago and it was a rough for me but not so for other folk so really hard to give advice but skin rashes can def be part of the reactions so lots of gentle moisturizer for you - and good luck and a big virtual hug!
X
If you are feeling well I would definitely have the holiday and delay the chemo by a couple of weeks ... a short delay will not affect the success of the chemo. Go have fun!
So sorry to hear you need more chemo. There are a lot of us around at the moment. I’ve been in hospital since Saturday with neutropenia so have been a bit out of touch. Hope you’re going to Cornwall. Love Jo 🌸🌼🌺🌻🌹
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