Breast Cancer Now Forum

Hi ladies. i have recently got travel ins thru Eurotunnel. They insured me previously when i flew to mexico - at the time i had a secondary diagnosis but hadnt started chemo and wasnt on herceptin. (my primary was so long ago wasnt tested for HER2 )They couldnt insure me recently for a trip to egypt unfortunately as although chemo finished last summer i am on herceptin and it was considered out patient treatment... I was aware they were having a meeting on 20th jan to assess these sort of appts and now they are using a much better approach: herceptin now seems to be classed as medication rather than treatment and so they were happy to insure me for a trip to greece June this year. Insurance sorted and holiday booked! Other times we have booked hols with very little notice, on the eve of a good scan result day and travelled with no insurance with regard the pre existing condition, relying on the confidence of a good scan result and nothing being likely to arise healthwise too soon however for small apartment bookings on tiny Skiathos booking in adavance was necessary in order to secure favoured choice of accommodation and flights and its great to know that my present health status doesnt penalise from me being entitled to full travel insurance including cancellation in case any thing untoward occurs between now and june. I would also like to say it cost about 16 quid!!!! so pls pls try Eurotunnel, even if you tried them before as, like i said above, a meeting on 20th jan changed some protocols. Yippee! Happy hols x ... View more

Hoorah for you! Its so ambiguous when initially given a secondary diagnosis, lots of peole have inspiring, real life evidence based experience of secondary success stories but its really hard to believe and trust the positives sometimes. A good scan result/a reduction in progression is your own real life success! And something to build on.  I have followed a few of your posts as i too did docetaxol with perjeta and herceptin and am now on ongoing maintenance treatment of the latter 2. recently got a portacath instead of the dangly groshong line and am getting used to my permanent ongoing outpatient appts...kinda weird to think how long i might know those chemo staff for!  Bring on the subcut herceptin! All the very best and pleased for you x ... View more

Hi rose - i have noticed that some of the side effects i was having when on taxotere and hp sauce have certainly improved and the last treatment session - of just the hp sauce - has been much easier. i think the thing i was most unprepared for was what a looooonnng day treatment day is! I expected the first treatment with loading dose to be long but each session has been a full 9-5 job. Bloods have to be taken, and checked, before onc gives the ok to pharmacy, who only then prepare the cocktail. Then each infusion takes over an hour, with a flush inbetween, pre meds etc etc, etc. the premed makes you a little sleepy and it was always a bonus if i did nod off for an hour or 2 as it made the time go by quicker. I have learnt to just go with it and although took kindle, letters to write, new novels etc, found i just zombied out for the day, took a nice lunch, made small talk, read very undemanding hospital mags and the time went by. It would have been useful if i cd have got internet access on my ph perhaps...could have looked up holiday/day out destinations and investigated other nicer things! The preand post treatment steroids affected my sleep, either wide awake for 24hrs or asleep for 22/24. Again, i just went with it, i'm very fortunate with an undemanding family (daughter at home aged 24) and an easy going partner, and took 6 months off work on half pay. Side effects for me included fairly severe diarrohea, a rather unpleasant and uncomfortable discharge in my undergarment department , occassional but pretty rough headaches and scaly feet. NONE of this was unbearable or continuous or stopped me from enjoying anything i wanted to do. A general tiredness and less energy stopped me from hauling 20 odd cans of water at the alotmen ttoo often and i have more nettles than beans to harvest this year but my gardenat home is beautiful, i have had mini breaks, day trips and meals out with friends and lots of time to relax. Probably waffled on too much here, apologies if so. msg me if you want to know more, really hope i havent worried you or anything, the above is purely one persons reponse and no two people will have the same experience. Hope all goes as well as it can do. take care Claire ... View more

Hi, hoping you feel the benefit of that radiotherapy very soon. It sounds like a very frightening experience to have to take on board. Lots of love and strength to you and yours Claire ... View more

Hi tylerrose -Im on taxotere, herceptin and perjeta. Actually have just completed the taxotere and now on what i call the HP sauce. I will be in touch with more info shortly but wanted to drop a quick line today - in the meantime have a look at post 18, belinda, on the topic Really had enough of the whole cancer Rrubbish in the family,partners and friends forum. Someone in a similiar situation to you i believe, 10 years on 🙂 There are inspiring stories here and an awful lot of truths,and every one's experience is different within a common bond, try not to get too overwhelmed (ridiculous comment i know), be gentle with you and ask as many questions as you want to! Claire ... View more

Hi ladies, im off down to cornwall that fri afternoon, feeling better than expected after first cycle of taxotere/herceptinand perjeta. Hope you all have great afternoon Alize ... View more

Hi Debbie, im here too! There are times when being gay IS different in the BC world and it always feels better to know you're not alone! I have never had any awkward moments from my 'team', oncologist/chemo nurses/surgeons when my partner sara has been with me at appts and together we already know the strength and love from friends and family and work colleagues. what can be sometimes difficult is supporting one another emotionally! As 2 women in 1 relationship there can be an awful lot of talking about meaningful issues and feelings!! and thats without a (secondary, in my case) diagnosis of breast cancer. sara and i weren't together when i was first diagnosed 10 yrs ago so im a bit of an old hand re the emotional side in some ways and at times i find it tricky sharing this journey with someone so close and caring and she finds it hard that, true to form, i dont always behave in the way she would have expected someone in my position to do so! The hardest thing for me is dealing with her scared emotions and seeing her hurting cos as women we aint that good at keeping things back! Anyway - wishing you and yours all the very best Alize ... View more

Hey sarah, thats really helpful. I will be in touch nearer the time to confirm if im coming. Thank you. What time is everyone meeting up? x ... View more

Hi rachel, phone them, the no. is listed above on someone elses post and obviously on the website. I, too, couldnt seem to get an online quote, i think i just couldnt believethat a company called eorotunnel would insure me without going on the tunnel! The link was on a separate heading under insurance i believe. I rang and told them i wanted to FLY to MEXICO, no tunnels, not europe, no cars and couldnt believe it when i got a worldwide annual cover for 70 quid, having just had rads to spine with mets there and in pelvis and ribs. had the best holiday ever, ziplining 300 ft high in the jungle, jeep racing and snorkeling with turtles before starting chemo on return. The info about eurotunnel first came to light after a newspaper report (guardian or independent i believe) queried why travel ins companies do not operate a fair 'fit to travel' policy on the basis of individual health instead of automatically penalising those with a long term chronic condition like diabetes, controledl hypertension etc or for being over 70. I work in a GP surgery and some of our 70+ patients are a heck of a lot fitter and healthier than our 40+ patients! Anyway, as stated above, eurotunnels only stipulation is that at the time of booking your holiday your gp would consider you fit to travel. You do not need a letter confirming this when you apply or when you travel just should you need to make a claim. I checked with my onc and my gp, more than once (!) and asked them to log in my notes that they were happy for me to travel on the dates i was going to go and got packing! I am another one who has emailed macmillan, nina, as well as mentioning it at work whenever i can! Happy holidays x ... View more

Im starting perjeta on monday! Funded by the cancer drugs fund, given 3 wkly with herceptin and taxotere. I first had BC in 2003,er-, pr+. Not tested for Her2 at that time, surgery, chemo and rads. then NED for a looooonng time until recurrence in supraclavicular lymph nodes. This time er+ and Her2+ I had rads to the neck and started femara and and them arimidex. A bone scan 1 yr after initial recurrence showed spread to spine, pelvis and ribs. I am eligible for this new regime as i have not already had chemo/herceptin for mets. i have been told i am only the 2nd person in the uk to be on this regime, other than all the women who underwent the trial -thank you all so much- hopefully this will extend the length of time to further progression. I have been told that the first woman to recieve the same protocol is from Winchester - wd love to hear from you, who ever you are, if you feel like getting in touch. All the very best to each and everyone out there x ... View more

Dear ladies, i'm in salisbury and am not sure that i wd be able to get to hedge end that afternoon as partner will have car at work but i hope you all have a great time and gain a lot from one another. I will be posting on various threads about some upcoming news re my treatment: I am starting perjeta alongside herceptin and taxol next week. Other than those women on trials i have been told that i am only the 2nd person in the uk to get this - funded by the cancer drugs fund. My onc told me that the other woman is from Winchester - pls, pls, pls if anyone comes across the 'lucky' no. 1 pls can they highlight my profile to that person as i wd love to get in touch. All the best everyone , x ... View more

Hi Kaz, another one in the same club as you. I first had bc in 2003, lumpectomy, chemo, rads etc. i didnt do tamoxifenfor longer than a year as pr + and limited benefit but loads of hot flushes. My recurrence also came back in a lymph node in the neck Nov 11 and i remeber being stunned that my gp wanted to send me to the breast clinic. I too thought it was an enlarged gland post a cold and remember feeling like the rug had been pulled from under my feet. It had been nearly 10 years!!!! I had radiotherapy to the area and was started on femara then switched to arimidex. Also this time Her2 testing showed i am her2 positive. I too felt a difference in the treatment approach and felt that no one seemed that bothered. i have moved towns and wondered if it was a different nhs trust approach....i have since had spread to spine ribs and pelvis with more rads to the spine - just one 'mega' dose andonly now am i starting on more active treatment, although i did start oral bone strengtheners pretty much straight away after the bone scan confirming mets. However i am really lucky (?!) in that as i am her2+ and not had chemo or herceptin previously i am eliginle for the new drug perjeta. Do you know if you are her2+, they didnt test for this back in our day and also my er/pr status changed. I try and take comfort from the many women here who have had bone mets for many years without further progression and i am aware of the new drugs available, thank you to all the women who went on trials, and the profession does seem to see this type of spread as akin to a chronic illness. The scariest aspect is wondering if and when further progression may occur. For me its been less than 6 mths since the bonemets occurred and im still adjusting and have times when im not sure how positive i can be. Acceptance aint easy but im getting there and appreciate not feeling ill as such. All the best kaz Claire ... View more

Me too! I started weekly paclitaxeland3 wkly herceptin this wk for bone mets, onc is applying for perjeta which will be given with herceptin and switch to 3 wkly taxotere. My onc has told me to almost expect an initial refusal but not to panic as she can then apply to the ?Breast Cancer Drug fund. I have read that it can increase time toprogression from 12 months to 18 months.... I have to say i was hoping for way more than 12 months time to progression from herceptin especially as i know so many ladies here have done really well for ages more than that on this site so i am ignoring the figures and just believing in anything that offers extra time for the experts to come up with the next thing by the time i need that!! ... View more

Hi ladies, thanks for responses. I saw the onc yesterday and after a chat with cardiology all was well for me to have herceptin. hooray! so had first herceptin with weekly taxol no.2 and other than being wide and steroid wired awake im feeling fine. hopefully will get the necessary go ahead for perjeta also soon and then apparently switch to 3 wkly taxotere... Night all x ... View more