CANCER SUPPORT THREAD 58 - New thread, new year, but the lacies are still here! Please join us if you have any sort of cancer, or are waiting for test results

[WhatWouldLeslieKnopeDo]

Happy New Year! may 2017 bring health and happiness to us all

Welcome to oldies and to newbies. If you've just been diagnosed then this is the place for you. And if you're waiting for test results then please pull up a chair. We will hold your hand while you wait, and hopefully we will be able to send you on your way soon enough. If it isn't the news you hope for then we will be here for you.

Our previous thread is here

Following on from royalmama's suggestion (see, you're not just famous for typos!) I have compiled some of the excellent advice from the previous thread and I will post it below. I've divided it into sections to make it a bit more manageable. Please give me ideas on how to make it better for the next thread! :)

Fingers crossed for your MRI scan chewing when will you get the results? I'm glad you're starting to feel better

Not sure but seeing the onc early next week so will press for quick results. Don't want to spend weeks wondering if it's in my brain or not.

I'm back on my laptop so can post again.
I'm on FOLFIRI - cetuximab was mentioned initially as being a possibility but as I've had two rounds of chemo I'm assuming that I don't have the right gene although I have another appointment on Monday where I can ask. Part of me wants to throw everything I can at it but another part is half grateful that I don't have to deal with a facial rash on top of the steroid acne I already have - although that's settled down a bit, and losing my hair.
For people who have lost hair through chemo how long did it take from the first strands/clumps coming out?
I have a PICC line and it seems to be really hard to get a prescription sorted for a waterproof PICC line cover so will probably just suk it up and buy one. The district nurses come out fortnightly to flush and change the dressing and then it's done the alternate week where I have chemo. I've also been fortunate in that there's an outpatient chemo suite at a GPs 10 minutes down the road that I can access rather than having to travel a minimum of 45 minutes twice fortnightly to the hospital.
LaaDeeDa I know exactly what you mean about wishing to just have stage 1 bowel cancer. It seems so unfair the difference between that and having metastasized. I really, really, really tried not to google initially and did manage for a few weeks but then came across the statistical 5 year survival rates.. But staying as positive as possible and at least waiting for the results of the first three months chemo. It also doesn't help looking into benefits and PIP etc either have to wait six months or have six months to live :( Have people here claimed PIP?
My consultant said that he was aiming for two lots of three months treatment (if the first lot works) and then a break for the summer so hopefully we can get away for a bit, not planning anything abroad as none of us have current passports but agree with however said it's such a pain not being able to book things in advance.
I hope everyone is having not too tough a weekend, Mybloodykids sorry you're having such a difficult time.
We went to the pantomime today and a meal out. Trying to make the very most of the good days. I've booked a family photo shoot for a couple of weeks time in the hope that I still have most of my hair as we don't have any decent pictures of all 4 of us. Have fabulous pictures of the children but it's one of those things I kept meaning to do and never getting round to.

Thank you mysillydog - admission on Monday afternoon and surgery on Tuesday. I'm petrified, but just want to get it over with now.

weebarra I've muddled through all of this with DS, I am amazed at how he's coped with his dad's death and my diagnosis. I get so sad when I think that childhood should be a carefree time, and his, well, I just feel that it's been so screwed up by cancer. If you think your DS would benefit from counselling or play or art therapy, or similar, it's definitely worth getting in touch with the local hospice or Maggie's. Headteacher and school have also been very supportive. Just another thought - does your DS think he can 'catch' cancer? DS was worried that DP had it one year, I have it now, and so he'd get it next. I think we've sorted that one out, but their little minds can go into overdrive.

This may be a stupid question. Is there such a thing as a lower toxicity chemo? I know that I just cannot go through with the standard FEC-T for all sorts of reasons. The oncs can make an individual treatment request to the health board, but I don't actually know what I could/should ask for. My surgeon has warned me that the oncs will come at me all guns blazing to have the standard treatment, but has also told me that other patients have been able to have other treatments, including single agent herceptin. I tried calling Breast Cancer Care (to ask about pertuzumab/herceptin without chemo) and I just felt the nurse on the other end wasn't listening and was pushing me to have chemo, so I was none the wiser! It wasn't a good experience!

Hope everyone is doing ok tonight. Onwards and onwards.

Wow, lots of posts -- sorry only replying to some, and I have no answers about the chemo questions, but thinking of you all

chewing and leslie, glad you're both feeling better

fluffy that's a great idea about a family photo shoot -- we've not had pics of the three of us (DH, DS and me) for ages, and have stubbornly refused to get ourselves a selfie stick

weebarra, hope your DS comes round soon. Ours is eight and one of his first questions was about whether cancer was catching. Once we told him it wasn't, and reassured him his friends in school wouldn't know, especially about my 'fake boob', (he was very specific about these points) he was ok with it. Obviously this isn't a suggestion or solution, just sharing.

Last but not least, Flippy, best of luck with the surgery! Will look out for your updates, but don't push yourself to post while you're recovering.

The plastic surgery nurse at my 4-week check yesterday mentioned I could have a prosthetic nipple done by the maxillofacial prosthetist at the hospital. It hadn't crossed my mind it doesn't bother me not having a nipple (DH says it gives me a rakish, one-eyed pirate look ) but I guess why not have it for special occasions...

P.S. I got lots of flowers from people after my operation. While I was very grateful, I don't like flowers -- don't like the overpowering smell of roses and lilies, we didn't have enough vases, and the hospital ward wouldn't have accepted them anyway (I suppose due to possible allergens).

In retrospect I should have told my friends and colleagues ahead that I was allergic to flowers and asked them to consider sending boxes of frozen food to my home instead -- they can be delivered with a message on a card (lovefoodreadymeals.com/collections)

Hi Flippy
Weekly paclitaxel is a lower dose and toxicity chemo. In the UK it is often given to people who cannot cope with docetaxel. It is less likely to cause neutropenia and because lower doses are given more frequently it is easier to tweak. It is not routinely given here because it uses more chair time (cost and convenience) but is a standard treatment in the US because it's low SE mean patients can usually still work. It's main SE is peripheral neuropathy which can last for months even years after treatment.

I had paclitaxel because I had a hospital admission on FEC and they wanted to avoid neutropenia. I was assured it has the same efficacy. It also ticks the herceptin should be given with a taxane box.

I'm not sure about an alternative to FEC. AC is used in the USA but I think its pretty similar to EC in terms of SE's. Some people have a lower dose FEC eg FEC75 instead of the standard FEC 100 (often elderly patients). My second FEC was given at 85% and that felt like chemo-lite but I was comparing it to the full dose which hospitalised me.

Hope everyone is having a good Sunday.

To Flippy
I also had paclitaxel (x12 weekly as opposed to 4x docitaxil every 3 weeks)
Other than tiredness, I did t have any SE from it -certainly compared to the FEC.

I was a private patient though and my chemo nurse said that due to the extra costs, paciltaxel isn't routinely offered on the NHS so be prepared to fight for it.

My iPad is too slow to allow me to scroll back to individual posts so hugs to everyone who needs them.

java, mysillydog and wine - thank you for that. I was looking at paclitaxel info, do you mind if I ask (I'm sorry, I'm sure you'll all have said this somewhere) but did any of you have node positive disease? The studies I could find for pac+herceptin were for early stage node negative. From the pathology so far I think I am Stage II, grade III, node positive, but I'll have definite results on 19th Jan. If pac is an option, I am well prepared for the fight to get it, but to be honest, I think the oncs would be ok with this if I was willing to have any chemo at all. Good thing for me is that I am a short drive from the hospital too, so weekly doses wouldn't be a problem either. Thank you again for taking the time to answer.

Java, good point re flowers too. My plastics surgeon is going to give me a new nipple at the same time as the recon - I am astounded that it was only when I asked that it became an option, as he didn't mention it before. Same as node clearance - I've asked my breast surgeon to remove them through the mastectomy incision if at all possible, which again, wasn't mentioned as an option until I raised it. Maybe he would have done it anyway, but I suspect not!

Chewing, good luck with your appt next week. Leslie, glad you're feeling better.

Fluffy, DP claimed PIP, he got the higher rates etc - Macmillan have benefits advisers and they can help you with this and fill the forms in. DP met with one of them who literally did it all for him, and it was all sorted very quickly. Definitely recommend giving them a call. He also got a blue badge, motability, etc.The consultants also filled out forms for us to claim on our life insurance - ours would pay out on a prognosis of fewer than 12 months. It's horrid to talk about these things, so I hope I'm not upsetting you, but not worrying about money will make a huge difference.

Wishing you all a good Sunday.

Flippy I had node positive Her2+ cancer grade 3, probably stage 2, so v similar to you. Avoid dose dense paclitaxel (usually higher dose 4x2 weekly) if you need low SE's. I had 9 paclitaxel, often 12 is given but my onc's all agreed on 9.

I had nodes removed as well.

I had dose dense paclitaxol but only got through 2 out of 4 cycles. I was in the most horrendous pain in my joints and muscles and ended up with peripheral neuropathy in my fingertips (which 2 years on I still have). No sickness unlike EC which I'd had for 4 cycles which was good but the pain was something else.

As to nipple after recon, I had my DIEP in Aug last year but was told things need to settle down before they would consider creating a new nipple. I'm seeing the plastics team next month to talk abut some adjustments to the new breast and my other one and suspect I will have surgery in the summer. Again, I'll need to wait for swelling etc to calm down before they'll offer nipple recon.

It never ceases to amaze me how different teams work in their own ways!

Thanks Flippy - going to talk to financial advisors at either Maggies or Macmillan to help and my sister in law works within benefits departments and has been really helpful with links and things. Obviously I'm hoping to be one of the 5 years and over survival rates and it's trying to work out a balance of what we should try and get now versus leaving insurance/pensions to run so DH and DC get the benefit when I'm not here ..
With my Teaching pension I didn't start until I was 30 and then had many years out as SAHM and now part time so won't be massive payout and if you take early retirement and then turns out I was well enough to go back into teaching it would have to be paid back. Lots to think about but DHs work health cover is looking like we can get some cash payments for each chemo session which is better than a kick in the teeth as they say :)
Flippy this may not be that useful as you've both already been through so much but we had this book when I told my two - DD is 10 and was able to take it away and read it and her teacher also borrowed it so she had an idea of what DD understood www.amazon.co.uk/Secret-Straight-Talking-About-Cancer/dp/0955953928

Hello lacies - hope you are having relaxing Sundays. The MRI was absolutely fine and big thank you to those who reassured me. Later the same day I had another biopsy which turned into a marathon - radiologist took so many samples I'm amazed there's anything left . Actually although traumatic the radiologist and radiographer were super; it was only when it was all over that I crumbled. Good news was that they decided against taking more lymph and will do sentinel node biopsy during lumpectomy/mastectomy. Leslie I'm so glad you're feeling a bit more human - and you too chewing.

Argy glad it all went smoothly. I hope you are not too bruised!

fluffy my hair loss on FOLFIRI/cetuximab has been quite bizarre. It started thinning in the first or second cycle. I got a wig and hats quickly. When it started to look straggly I cut it into a bob. But I managed to last from mid-June to September before having to shave it (I still had hair but noticeable bald patches!) I had a five week break from chemo in October due to a pulmonary embolism and it started growing back. Sometimes bits fall out and it is thinner than before, but it's now about 1.5cm long with no sign of falling out again! (Actually a bit annoying as my scalp is so itchy from cetuximab rash and now I can't moisturise it easily)

The regrowth is probably from the cetuximab, which causes hair growth. But gradual hair loss seems to be more common with FOLFIRI, having spoken to others before mine fell out :)

Flippy good luck tomorrow I also hope that you and your oncologists can come up with a plan that works for you

I hope everyone has had a relatively relaxing weekend

I meant to say about hair loss in general, I'd really recommend getting a sleep hat before it falls out. I hadn't considered just how cold it would be at night without hair.

Happy new year Leslie and everyone else, thanks for thinking of me.
I've just skimmed through the posts fantastic tips there, I'm doing well had great family Christmas, and I started my 20 sessions of radiation on the 4th January it's all going well,my boss extended my full pay to include January (so lucky to have an understanding employer and no pressure from them). I'm looking forward to a healthy 2017.

bobdylan I hope radiotherapy is going OK and not leaving you too sore. That's good news about your pay. Having an understanding employer makes such a difference :) happy New Year!

Morning all, hope everyone is feeling as well as they can today, to all having a tough time.
royal I hope your MRI goes smoothly today.
leslie are you still in hospital or have they let you out yet? Hope you continue to feel better.
As a public service announcement can I remind all the breast lacies to continue their exercises long after their surgery. My cording has reached my wrist and the gentle massage and exercises are making little difference as far as I can tell. They said I was "very unlucky" to experience it 9 months after a sentinel node biopsy and not even a full ANC.
On the plus side I've been to pilates this morning and all 3 DC have gone to school
DS2 had a quick trip to A&E last week with an "upper testicular appendage torsion" ouch ouch ouch!

Thanks for the paclitaxel info. On the ward. Time is dragging, feel like I've been here for hours already. Have asked for stronger sleeping tablets for tonight.

I hope you manage to get some sleep, being in hospital before anything has been done is very boring.

Flippy I hope you had a good sleep and that your surgery goes well hospital is not a very restful environment so I'm glad you were able to get sleeping tablets!

pepper OUCH! poor DS2. I hope he's recovering well. Sorry to hear your cording is so extreme. I hope that the exercises and massage start to yield some results

I'm finally home from hospital. I came home last night and basically just slept until this morning. It's still unclear exactly what was wrong. Just my body malfunctioning really. My surgeon is going to do an examination under GA tomorrow so hopefully that will not show anything sinister! :)

I hope everyone has a lovely day

Just checking in quickly as I've not logged in for a few days due to work and other stuff taking priority.

Chewing and Leslie I hope you are both feeling much better now and Leslie I hope your GA goes well tomorrow.

Fluffy I'm on FEC-T (had 2nd cycle of FEC about 10 days ago). I found my hair started coming out about 10 days after the first cycle in large quantities and I ended up having a buzz cut a few days after Xmas as it was getting everywhere and upsetting me seeing it fall out. I am now 13 days after cycle 2 and the remaining stubble is also falling out so I expect to have lost the lot by the time I have had the third FEC.

With regard to the PIP my Mum managed to get the full amount and also a Blue Badge. The McMillan nurse came round and filled in all the forms and got the GP to sign it off and it was all dealt with very quickly.

Flippy thinking of you today and hoping your surgery goes well.

Java I gave a very undignified snort of laughter at the special occasion nipple.

Argy sympathies re the biopsies; whilst the local anaesthetic did its job it was still very uncomfortable and I was so sore afterwards. I was dreading going back to have the markers put in but that was much less traumatic and I was actually able to watch it on the screen.

I have my next pre-chemo check up with the oncologist on Thursday. My only problem is that the arm they put the IV in was very painful last time. The area above my wrist went extremely cold at the time and is still very sensitive now (feels like sunburn). The top of my arm was bordering on painful about 30 minutes before the end of the chemo session and was difficult to move it afterwards and I can feel the vein in the crook of my arm has gone hard. I was prescribed some cream which has helped but I am not sure my arm will stand up to another one and as I am right handed I don't want it getting any worse so I am wondering if they will recommend a PICC or a Port.

As I haven't had surgery yet the chemo team said that I could have the last FEC in the left arm and then the T cycles are less harsh and they can put them through slower to avoid more damage. Has anyone got any experience of this or should I push for a line for the last 4 cycles? Thanks.

Good afternoon everyone!
I've not been back on for a few days as I've had my 'bed days'. My chemo is every 2 weeks and I am brilliant for the first several days and then useless for the next few. I start to pick back up just in time to have chemo again!
My main issue on my rubbish days seems to be tiredness and a stomach issue where I will be sick for seemingly a million reasons (stomach too empty, stomach too full, stomach full of acid, moved in a way my stomach didn't like ) so I end up staying as still as possible to try and minimise it.
I had previously been thrilled with my weight loss but my consultant wasn't, so I'm doing my best to eat, and hang on to, as much food as possible!
I'm eating mints like they're going out of fashion. I think everyone is fed up with me as, a few weeks ago, I could only tolerate boiled fruit sweets but I've predictably gone off them after everyone bought me some My cupboards are full of half empty packets of many foods I've been crazy for and then gone right off! My taste buds are ugh and the weird taste in my mouth does not help with the nausea!
Sorry for such trivial whinges. Some of you are really having terrible times. I hope everyone is having a decent day with no pain and no irritating drug side effects.

Cookiepuss - I am clueless about the veins and lines etc as I have got a port so I can tell you how I've found that if it's any help?!