Cancer Support Thread #71 - here to help if you’re dealing with cancer in any shape or form, come in and say hello.

[Brassica]

Hi again everyone and welcome to the 71st new thread for cancer support.

All those who are currently being treated, have been treated in the past, have worries and concerns and/or are having tests are very welcome to pull up a chair and chat, vent, rant, pour hearts out, share milestones and anything else! We are a very friendly and all-too experienced bunch on here and there are no questions too small or silly to ask.

Our previous thread is here .

Anyone with any type of cancer (female or male) is welcome. And we will hold your hand if you're waiting to find out whether or not you have cancer at all.

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Please can I invite current members to reintroduce yourselves below for latest situations and stories so far.

Going stir crazy at the moment. Been told that I can't run/lift/exercise (apart from walking) and it's driving me nuts I just want to train at the gym or go out for a nice run :( I have even got some new leggings and tops and nowhere to wear them. Even considering contacting my oncologist to ask when I can run/train again. My operation was only on Friday though

Thank you all for the hand hold, DH told me earlier he had never seen me as stressed as I was yesterday!

Surgeon called earlier (after I had cried on the phone to my BCN at 8am this morning), he was just waiting for the full results to come through so nothing sinister. Pathology is good, not the 100% response to Chemo I was hoping for though realistically with Inflammatory Breast Cancer that was highly unlikely to happen. Next best thing though and only 2/30 of the lymph nodes he removed showed traces of cancer which means my radiation treatment will be chest wall only which I'm guessing lessons my risk of Lymphoedema. I have a face to face with him on Friday so need to think of suitably intelligent questions to ask 😁

Is anyone here taking Femara or the like? I would love to hear your experiences. He did say that taking the hormone tablets would be essential for my long term treatment.

Glad to see people are ploughing on with treatment, hugs to anyone not having a good week xx

Thanks for popping by Wombat, nice to see you and good luck for the review later in the year!

WTF you may not suffer much at all on the taxol, it is definitely kinder than EC (I cant remember if you had that yet/will have it?) The nail varnish is working for me, I’ve had zero bone pain and no neuropathy yet - though for full disclosure my right hand tingled just a little last night after dose #7 so that may need watching. I also have very itchy elbows in the last week which I am slathering in La Roche Posay cream for eczema. It’s not bad overall though.

That sounds really good, snow and I hope you feel reassured after a stressful wait. For Friday, if you’ve had a full node clearance then I would certainly ask about managing lymphedema as I understand there are exercises/massages needed and pressure sleeves available and that it can be painful if you get cording, it stops you bending your arm.

Snow. No wonder you were stressed. Waiting for results is horrible but really glad to hear that your results were good.

Brassica and WTF I found the Taxol not too bad. I had 9 weekly sessions. I do have some neuropathy which kicked around 6 weeks in. It is just a bit of numbness to the ends of my fingers and toes and doesn't affect my ability to do anything. I hadn't heard about using dark nail polish or I would certainly have done that but I didn't have any serious problems with nails. Just a couple of small bruise like marks to a couple of finger nails and some very odd looking ridges which are growing out.

We are off today to France for a few days. We had some short trips planned in the spring which all had to be cancelled so getting away feels as if we are reclaiming our lives just a bit. I have to go to the hospital this afternoon first for an Herceptinn infusion but then straight off to the channel tunnel😃

Morning all!
snows so happy to hear you got some answers and are feeling ok with it. The waiting is beyond awful and crying to your BCN is totally allowed! I'm not familiar with femara.....is it an oestrogen suppressant, like tamoxifen? I was on that briefly in the past but not long enough for it to have either good or bad effects so can't really help there. I did get cording after my 1st mastectomy though and that was quite painful. I would saymake sure you do your t stretching exercises...do them without fail...and persevere with them....I used to sit watching the tv with my arm stretched out along the back of the sofa for 15 mins here and there as well. It felt curiously uncomfortable and at the same time really good just to stretch. I did get quite down about it for a while as the tightness was all the way from my armpit to my wrist, but then it suddenly got better almost over night and now I just stretch now and then for maintenance.
Interesting I've got something like cording in the veins if my chemo arm thanks to the E bit if the FEC that I've just finished. Doc says it will get better, but I'm back to extra stretching again!

meercat brassica I really hope I get of lightly with the taxotere as the FEC dis knock me about. No aches or pains tiday, though I have had a little bit of nausea creep in. I think the bone marrow injections so that to me too....I'm just susceptible to being sicky I guess! I've noticed that I don't have any Emend to take for next time, so I've rung up to query that tiday and waiting a call back....I neeeeed the drugs

meercat enjoy your well deserved break. So nice to be reclaiming your life. I had to cancel so many things this year when I was supposed to be celebrating my big birthday so will be on it next year!
Me and my fella are going to get a couple of nights away over the forthcoming bank holiday as I'm hoping I'll be feeling good then. Gonna try to book somewhere nice tiday.Next treatment will be the Tuesday following the BH Monday.

Sorry for typos, mega post and crap name checking! I do struggle with that.

Hello everyone, hope you are all as well as can be expected, just wondering did anyone have fluid leaking after their lumpectomy, it's been three weeks since the surgery and every now and then I'm covered in fluid, it just flows out, also the lump under my arm is quite big and can get very sore, but I think that depends on what I'm wearing though I'm not sure.

Enjoy your trip meercat, me ds1 and ds2 have a short break away next week, can't wait.

Not unusual to have fluid build up ellen though I didn't have any leakage as such, just tightness from the accumulation. Might be an idea to contact your BCN and see if she can drain some of it off for you. It's a bit gross but feels amazing afterwards.

Thanks WTF99, I'll ring her now and see what she says.

Afternoon everyone. Has anyone heard from *TQ’ or in Contact with her? X x

Her other thread ‘Fat belly’ is on the same board here Born and she’s updating on that.

snow waiting for results = imagination running riot. Glad it was good if not perfect news.

Brassica I have some very itchy skin conditions and get Diprobase, among other things, on prescription. It's very heavy duty moisture cream and soothes most things for a while. Might be worth asking for some? You can buy OTT but it's about £12 a go and you need to lather it on.

meercat23 I hope you have a lovely trip. I managed a holiday just before I was diagnosed and all other travel is now on hold. My travel insurance was astronomical before cancer was a factor.

Had my appointment today and it's all good. The scans show nothing suspicious elsewhere so surgery is going ahead in a couple of weeks. I won't know which chemo regime I'll be on until I see the oncologist in September but it will be combined with herceptin.
Feeling much more positive now.

I'm lurking born . My own personal thread is here

I'm not great - have been in a lot of pain today because of ascites (build-up of fluid) and am going into hospital tomorrow to be drained.

It's my 60th on Sunday and the DDs booked a weekend in Cornwall for us all - but I'm not fit to go and they booked it before they knew how limited my mobility would be. I don't know whether or not I'll make it.

Sorry to hear that you are in pain TQ. I hope they can sort the quickly

Shame if you miss out on Cornwall but I am sure they will understand if you don't feel up to it.

TG I'm so sorry to hear that your Cornwall trip might not be possible. I remember your post about all the things you want to do....it really stayed with me. Not being able to do them is really crappy.
I was dreading my 60th birthday last month but managed to retrieve something nice from it. I hope you do too.
Much love from a stranger xx

TQ so sorry to read that

Is draining a day procedure, or might you have to stay in?

@Skap,

The good old NHS has never failed me yet and I am lucky to have an amazing consultant who makes sure you get all your appointments promptly etc.

Technically I'm a beaver leader so the little ones but DH is scout and explorer leader, so I am always his first aider, sounding board and whatever else if he plans on taking the troop away. Does stop me dwelling on things, that and a toddler - no room in my brain for much else

@Minxmumma even more heroic if you don't have DC of beavers/explorer age yourself! I have fond memories of catering for cub camp and trips as a parent helper, though I always found the beavers a bit challenging. DS2 now 21 was asking me how you judge how many potatoes for a number of people and I told him the "formula" we used to use for camp cooking for 30 boys and adults.

Hello all - have been reading but not posting for a few days. Glad to hear Snows has quite good news. Wishing others relief from itchiness and flaking nails etc. - and Ellen hope you can get the fluid drained, that does sound nasty. Have posted on TQ's own thread.
I have another week before my next chemo, have been feeling fine for a week already so that's a good respite. However just got a copy of a letter from the first doctor I saw at Barts, to my GP, where he mentions discussing the "nature of ovarian cancer where remission is followed by recurrence and further treatment " - this makes it sound inevitable and I so want to believe I will be ok after this round of chemo. He does add that my cancer was detected early, BUT it's an aggressive type. DP read the letter first and was upset. Fuck this shit. I know there are many people on this thread in similar and worse situations. Hoping for the best for us all.

Hi Bridget - somehow it’s harder seeing it in black and white, isn’t it? I remember getting a copy of the letter from my oncologist to my employers insurer, saying I had a “significant risk of recurrence”. Doesn’t half give your equilibrium a wobble. Sorry

I saw a Twitter post this week from someone in the West Country (where they’re expecting severe weather this weekend). It was a lovely photo of a beach and they commented “Never mind the forecast. Look out of the window and enjoy the view”. I’ve decided to make that my rule for life!

I’m sure that’s easier said than done when you’re having treatment too. I’m just suffering steroid induced sleep deprivation so am very lucky at the moment

Toofar that's a great rule, and so appropriate right now! Thanks and sending you sleepy vibes zzzzz

Hey Bridget and toofar
The 'what ifs' are mindboggling and I've had a few moments recently of wondering what the future holds. Something about passing the half way point of my chemo I think and just beginning to look forward a bit to when it's over. I haven't opted to get letters or had any stats type conversations with the docs....can't face that whilst dealing with the everyday reality of chemo. But yes....wishing the best for us all....and I'm gonna make a note of that Twitter post!

We'll, Ive been a bit cocky this cycle thinking I'd got off lightly with side effects since my first taxotere, perjeta and herceptin on Monday, but have been stricken with the dreaded dire rear several times over night and now waiting a call back from the OOH doc, who according to the chemo helpline will be doing a home visit to check me out. I can't quite believe that. Not sure it's necessary to be honest. Though I guess I'm about to enter lowest immunity phase, so maybe. I stupidly took paracetamol this morning as well for a headache, so can't be sure my temperature is reading correctly. What a pain!

Wishing everyone an uneventful Saturday, unless it's nice events obvs.

Hi everyone, Bridget I did get it drained and it was a great relief, bloody thing is back again today though, clinic closed till Monday and wouldn't be able to get there till Thursday anyway so I'm sticking an ice pack on it and hoping for the best, I'm sorry you're having that worry after seeing the letter.

Skap I'm glad your results came back like that, are you having a lumpectomy, I'm still waiting on the treatment plan.

WTF99 so sorry to hear the effects on you, you must be exhausted with it all.

We're forecast shocking rain soon so I think it will be sofa and telly for the afternoon.

Best wishes to you all

Hello everyone, I’ve been reading and lurking the last few days.

Skap I’m relieved for you to hear that there is nothing else to factor in now so hopefully you can press on with getting the treatment plan and get your head round everything.

Bridget, I can imagine that letter faves you and DP the jitters. How are you feeling since your op, I know it was a big one and it must have (literally!) taken it out of you so with chemo now thrown into the mix you’ve been put through a lot. Only natural to feel less upbeat now and again.

Poor you ellen with the pesky wound not behaving, it must be so uncomfortable and the fact that it hasn’t felt right since the start doesn’t sound right. Where are you off to for your holiday?

Hope meercat is enjoying her haunt to France and indulging in good cheese and wine!

WTF sorry about the dire rear and hope you have managed to get it to settle down with some Imodium or something. It is exhausting.

Poor TQ, I saw on her thread that she’s still in hospital and not going to Cornwall. What a huge pity.

In the face of that, I don’t have much to moan about but that won’t stop me, obvs. I have been feeling weaker and weaker this week after my ‘hard’ chemo dose on Tuesday and food is unspeakably horrible so I’m struggling to get much down. As my haemoglobin wasn’t good on Tuesday I’m kind of expecting this week’s ‘easy’ dose to get nixed and delay me getting past this chemo phase. I think because all I’ve known so far has been chemo, I’m really really keen to get to the end of it because then the lumpectomy feels like so little in comparison and yet will be two out of three phases ticked off. I seem to be in Groundhog Day though and desperate to move on. I’m also pretty damn tired of food tasting so shit all the time!!

Well it can’t go on for ever can it. Eventually chemo will end and I need to keep my eyes on the horizon. I know I am lucky indeed that my response to it is going so well, so I just need to crack on. But today I feel a bit fed up with it!

Hope everyone has something nice lined up for the near future and we all get some respite from our niggles or pain.

Fuck’s sake - gave you the jitters and jaunt to France!

I'm back into full on panic mode. After seeing the consultant last week and getting all my pre assessment done I wasn't expecting anything else to happen until my op on 22nd. Today I got a letter with an appointment to see the consultant on Thursday. Can't ring anyone to ask why until Monday and I'm imagining all sorts. Worried my other health issues are going to affect my treatment, more than they already have.
Sorry to all of those who are feeling poorly.