I'm lying here feeling a bit desolate, hoping for some reassurance and advice.
I'm starting Kadcyla today but I'm meant to be travelling to Spain on Sunday. The oncologist did say it was ok, but now I'm having doubts... what are the chances I will get ill? The consent form I signed did talk of risk of neutropenia, need to take my temperature every day etc... I desperately want to go and it has cost us £000s... but what is the risk of complications, with Kadcyla? Can anyone advise?
My three boys will be so upset if we don't go.
Also I am terrified, yesterday I found a huge hard lump just above my clavicle. It must be on my lymph node. It's at least 3cm dia.
So stressed, I feel I can't do this any more (keep up the cheery smile, try and have a normal life etc).
Thank you,
Lucy
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Ursula_I
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Hi ,I am on Herceptin and Perjeta so I’m not really sure about Kadcyla . I have gone on a good few holidays since restrictions lifted and on one occasion I asked could I defer my treatment by a week and my Oncologist had no problem with that. I wasn’t worried about side effects it was more the timing as I have treatment every three weeks .
I don’t know if that’s an option for you but you could ask . Holidays are so important x
I've been on that combo too (Phesgo) but it's stopped working so I didn't have my injection as planned last Friday. We'd planned the holiday around that schedule. The Kadcyla was booked in at the last minute for me to get started and I think it's unwise to wait another three weeks which is what it will be if we held off until after the trip. I already have a lot more breathlessness and fatigue because of the progression and now there's this lump on my neck and another one under my armpit. I was "feeling well" before but not so much now!
Of course it's going to be boiling in Spain snd an arduous journey there by train...
The thing is Kadcyla has chemotherapy in it but my understanding is it's a lot more easily tolerated than most chemo, so I'm just wondering if I can just assume I won't have complications while I'm away... would be awful to end up in hospital... I got neutropenia after my first round of FEC in 2016 and it wasn't pleasant.
I’m so happy you have decided to go on your trip. Your first post had me a bit worried, 🤣
I just returned from Italy where it was a 104 in the shade, 😂
I took my hand fan plus I had a cold water bottle to spray all over my hair and face which saved me a few times from nearly overheating! Don’t care what I looked liked, it worked like a charm!
I only brought a carry on, so no waiting for a suit case! We waited 2 hours in line to go through customs and our flights were delayed by up to 3 hours. Give yourself plenty of time and pack a dose of patience. It was worth every minute of our vacation!
Spain is one of my very favourites! Where exactly are you going?
Have the most wonderful time! And send some pictures!
That's a good tip, thank you! (Hand fan). I haven't got any hair to get hot 😂 but a spray for my face is a good idea too...
We're going by train, Eurostar to Paris, TGV (top deck!) to Barcelona, then a cross-country train in Spain to Valladolid which is where my brother lives. I'm looking forward to seeing the countryside roll by, hopefully the a/c won't break down!!!
No beaches but plenty of shady parks, cafés galore, churches etc. We're going to Madrid for one day, to the Prado museum, can't wait to see the amazing paintings again, I last went in 1989. Hieronymus Bosch and Peter Breughel, Velázquez, Goya... 👀😍👀
Two days in Barcelona and one night in Paris on our return trip. Bâteau mouche ride hopefully, never done one of those!!
I was advised to "not wait" if there were things I wanted to do... and this trip is one of them...
Will certainly post pics. Meanwhile thank you for your good wishes!
I’m coming to the end of my 1st cycle of cape, I was expecting to be knocked for six immediately (which was what happened with ibrance) but I’m still waiting. I was so afraid as it’s a chemo drug so I do understand how you’re feeling.Letting kids down is difficult but if you’re feeling well within yourself (putting aside our diagnosis of course 🙄) take the trip, your meds as instructed, keep hydrated, take a hat, masks and lots & lots of sunscreen. BUT only you can make that final decision.
Her advise to “take your meds” made me remember something. Once, years ago, a doctor offered to write me an antibiotic script to have on hand while travelling, just in case your temp goes above normal and they would like you to take it. That is you might need to get it filled before you go but at least you’ve got a back up in the remote event you need it.
I think they would be honest if they didn’t think you should travel. Just be wise and take precautions wearing a mask in the train etc
I am plagiarising these powerful words shared by another board member. (Apologies and thanks in equal measures.)
“Fear does not stop death.
It stops life.
And worrying does not take away tomorrow’s troubles.
It takes away today’s peace.”
You are going through a lot at the moment but you do have your oncologist’s approval to go away. I recently went on holiday and felt the best I have for a long time. (And I never bothered with insurance!). Holidays are known to help with stress.
Life is for living. Take a deep breath, be brave. My onc said “holidays trump cancer” which I totally agree with.
Go and make some beautiful memories with your family. ❤️🤗
Thank you for this, it really helps. I am feeling braver now!! I've woken up with a headache and slight nausea but not too bad at all. Going to take it v easy between now and when we go away. Thanks for those wise words... I need to grab life with two hands again!Lucy x
LucyI really hope you decide to go on your trip. It’s not easy so many what ifs and buts. If you have your Onc approval that’s a good start.
I have had a rough few months with breathing difficulties, pleural effusion , getting drained 3 times weekly, and now onto Xeloda tomorrow after a couple of years on Ibrance some progression . Also radiotherapy soon as Sacrum is causing problems again. I lost 20 lbs last month and have now over the last 2 weeks decided to njoy the weather and have been going by myself to pub gardens in Durham and eating out for lunches with my book. I’ve put 10lb back on just because it’s a change of scenery and someone is cooking for me ., it’s my little fingers up to this MBC right now, a table for 1 every day lol.
District nurses say I need to just venture into garden but I disagree, I have an automatic car and go where I want. They say I’m doing well resting at home, little do they know I’m on the motorway as soon as they disappear, it’s crazy life is for living.
This disease deserves to be challenged by us as much as we can even though we might feel rubbish when we leave the house, if it’s possible we need to keep moving and enjoying ourselves while we are able to.
Have a wonderful holiday and post pics that I can view from my Pub Garden table.
Good for you, lunch for one + book sounds perfect to me!! We were up in Durham last week for my son's graduation... how lucky is he to have the ceremony in the company of the remains of three saints?! Beautiful surroundings of Durham Cathedral.
I love the NE, just wish it wasn't so far from where we live!! 😂 I bet it is gorgeous on Bamburgh beach in this weather...
Good luck with the new treatment. I hope it will bring relief for you and the chance to read a library of books! Just take it gently.
5k micronized L-Glutamine by the Naturopath at Cancer Centers of America in Phoenix,
to help with the naseau from chemo .
It did help , I still take it on and off as needed but am on a chemo pill not the IV chemo now. It helps to repair the Myelin Sheathing in the stomach. I also take electrolytes now as well since it is hot here in Florida where I live.
I take 5k (one scoop) of the L-Glutamine powder in 8 ounces of water on an empty stomach before bed.
I am also taking a probiotic.
I hope that helps , and have a nice vacation in Spain if you decide to go . 💗
Thank you very much! I will look into that. I've been taking prebiotic 'shots' in the hope of keeping myself healthier but I've not heard of L-Glutamine.
Hi,This may be of interest . Revolut travel insurance . It doesn’t cover existing conditions but everything else. Cost €7.99 per month. Unfortunately, due to Brexit, my understanding is that you are not covered under EHIC scheme which covered you for everything in public system in Europe .
I think we are covered. Ehic becomes ghic. But would be good if someone could clarify. I got additional travel insurance with insurancewith. Very reasonable.
My quote fromInsurancewith was £165 for the year. Bc with mets to bones only. Newly diagnosed. All clear wanted over £1400. Both co will change the cost (upwards) as the year progresses and my treatments change etc. I was on kisqali and letrozole when took out the policy and had one stable scan.
So sorry to hear this Lucy, how long are you going for? Are you UK based and do you have travel insurance as you would have to declare all this. If there's no insurance problem, I'd be inclined to take all info with you and go. The Spanish medical system is good if you have an emergency. Do you have a GHIC or EHIC card; these give you medical treatment at the same cost as local people. I was in Nicaragua when I first had lymph nodes pushing through my chest, and I stayed on for some weeks before returning. I did go to a hospital and they misdiagnosed, but I was glad really otherwise I might have come home and I don't think it would have made any difference to the outcome!I've just been to Spain and I took my emergency card and the latest oncology report with me. Good Luck. Carolyn x
Gosh Carolyn, what a drama for you in Nicaragua! I am so glad everything was ok for you in the end; and what an amazing destination! I would have loved to return to Latin America (I lived in Colombia in the 1990s) - Bolivia was where I wanted to go next - but it's not to be 😥. No plane travel.
Thanks for your wise words. I have my old EHIC card so I'll take it! Tho today I also purchased comprehensive insurance which covers me up to £10m medical costs 😂.
Hope you had a good time in Spain! I can't wait now, been getting more excited with all this wonderful encouragement (thanks ladies).
You are beating yourself unnecessarily. Can put off starting the new meds until your holiday is over? That is the best solution. Don't decide on your own but ask your nurse or doctor or the National Service. Three weeks will usually not make a difference. Best of luck whatever you decide. By the way, I have advanced Cancer nbow and am on the last choice before IV Chemo.
I can't answer your meds, however, family trips and spending time with the love of your family and friends is soooo very important !!! They are a part of our healing. I know it's hard as we all have our scary moments and pain..just remember cancer does not define who we are. We need to live our lives the best we can. Just remember rest, stay hydrated and have the time of your life. Sometimes fear is worse than our symptoms!!
I hope you have a fantastic holiday ! Rest when you can and enjoy ! Pack your anti nausea, Imodium, etc. be prepared and you likely will not need any of it .
My oncologist has mentioned Kadcyla as my next treatment, everything I have read says it is very tolerable.
30 hours after my treatment I'm feeling great! Long may that continue! The nurse yesterday said that if people have complications it tends to be after a few cycles.
My vote is to go. Worrying "what if" is something we all need to turn off. May you be well, and if something happens your oncologist can be on speed dial one! May the heat abate in Spain!
I truly hope you go on your vacation. There’s no better medicine than looking at the smiles of your children as you spend unforgettable time together. Memories that will last their lifetime and yours. You are more equipped than you know to handle any bump in the road you may face. You may not face any!Safe travels💕
Thank you so much, and yes I do hope we don't face any! My three boys going with me are young men really (16, 19 and 24) -- all the better for carrying my bags 😍 It will be a great chance to spend time with them on the cusp of adult lives. And with my ageing parents... may not get that chance again. So I will seize the day and make the most of every moment. Gently, of course!X
Hi Lucy- I can’t speak to the treatment you are on but I know how scary when a lymph node grows to 2 cm like I had! I wanted to get it radiated and even did the consult and they were about to make the mask. But my Dr preferred I wait. He was hoping the new treatment ( Verzenio) would finally work. Took a few months and now it is small again. Scary time. Then I got a pretty clear scan except rhe lymph node still lights up… so I planned a trip back to NZ on sept 1!
DearUrsula Of course, you will go with your family to Spain, you will have a blast, you will forget all your troubles and you will thank your lucky stars that you took this wonderful opportunity that presented itself to you! Please send us a picture of all of you and your family.
i hope that you will travel. i know when i allow the mind to play the 'what if' game, it contradicts the healing. all i know is i have this day. travel, family, and friends contribute to the happiness of this heart and health of this mind-body. i chose to enJOY life, even with restrictions.
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but I've not heard of L-Glutamine.
Changing treatment, had 12 months out of Kadcyla 
Should I be concerned? 
Hi everyone!
