New year, new thread - cancer support thread 68 - join us if you have cancer, or are waiting for cancer-related tests

[WhatWouldLeslieKnopeDo]

Hello everyone,

Welcome to the new thread. Our previous one is here.

Anyone with any cancer is welcome, or anyone waiting for tests because they might have cancer. If you're new, just jump in wherever. Don't feel you need to catch up with previous posts. We talk a lot! Ask any questions you need to. Someone will hopefully have an answer. And feel free to post photos of cute pets too.

Whether you're new or not, it's helpful to post a little introduction on the new thread to save people trying to remember everyone's different diagnosis and treatment.

[iVampire]

Hello!

Thank you for starting up the next iteration of the thread.

My intro: I have leukaemia (CML) diagnosed out of the blue a bit over a year ago, it’s been completely kept in check by TKIs (a daily, oral cancer cytotoxic drug, sort of chemo) but it may not have completely poisoned it away at the molecular level. More test results imminent.

(They also found out incidentally that I have a liver cyst, benign, shrinking but still surveilled, and a gallstone - seems like there’s something new every time they peer in!)

I’ve got a cold at the moment which has neither improved nor worsened.

I’m in my 50s with teenage DC, and am the perfect annoying twat who runs half marathons even when on treatment (but promise I won’t post about it again on this thread unless exercise/running comes up from another poster)

[WhatWouldLeslieKnopeDo]

I'm Leslie. I am 27 with stage IV bowel cancer (lung and lymph mets). After major progression and a nasty bout of pneumonia I am now on oxygen permanently. I live with my lovely parents who are caring for me. I am currently on oral chemo (Lonsurf), but I expect to stop that after this cycle.

[Namechangeforthiscancershit]

Hellooo! I’m 34 with stage IV bowel cancer too (I am basically copying Leslie but with a few more wrinkles!). My mets are liver, lungs and lymph because you know, go big or go home. One of my friends asked if it was the “full house” of bowel cancer. Yep pretty much!

I’ve just finished 6 months of oral and IV chemo, having also had another run of chemo, radio therapy and a liver resection. Waiting to hear what they have planned next.

Have great treatment from an amazing team. My cancer is incurable now but I don’t think about that too much and just crack on with treatment and taking each day as it comes (bleughh! Sorry substitute less sentimental phrase as you wish).

Welcome aboard new and old!

[Dulcedelecherocks]

Hello. I had stage 3 bowel cancer last year. Current scans clear but the devil never goes away. I'm 44.

[Toofaroutallmylife]

Hi, I’m fairly new here. I was diagnosed last week with a malignant melanoma on my vulva. I’ve had some scans to work out the extent of the cancer, and now I’m waiting for an appointment to find out the results and get a treatment plan.

I’m 50, with kids aged 11 and 14.

[KeepCalm]

Hello!

Am KeepCalm, 42yrs with DC 15,12 & 10. Diagnosed in Sept '18 with Stage 4 BC, grade 3 triple negative with mets in right lung.

[TwitterQueen1]

Helloooo Call me TQ
stage 3/4 ovarian cancer, dx March 17. Now on 3rd line oral chemo (except I don't think they call it chemo, nor immunotherapy, it's a PARP inhibitor but that makes no sense to anyone except the doctors...). It's a wandering kind of cancer - they call it a reticulation, which is
"a pattern or arrangement of interlacing lines resembling a net." plus mets in groin and on spleen.

59 years old, 3 beautiful and amazing DDs of 19, 21, and 23.

[Rosiesmummy17]

Toofar, when are your results due do you know? Xxx

I am also very new
I am 28 as of a couple of days ago and keep forgetting.
Have an 18 month old daughter who I love sooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooo much
Waiting for a biopsy on a suspicious lesion "down below" due to lichen Sclerosus xxx

[purpleunicorns]

I'm 35 and was diagnosed last October with cervical cancer, despite chemo and radiotherapy I found out in June that it had spread and is terminal. I've just got back from seeing my oncologist and the chemo hasn't worked as well as he was hoping as the tumour near my bowel has grown.
I'm back to see him in 2 weeks to discuss going on a trial but as I've had so many issues with my bowel he's not sure if they'll accept me for any trials
I'm still stuck in hospital as my heart rate and blood pressure is far too high.
I always think things could be worse and other people have worse things to deal with but I'm seriously fed up and scared if I can't get on a trial then that's it

[Toofaroutallmylife]

roses - don’t have a date yet, but hopefully this week

purple - so sorry you didn’t get better news today

[Rosiesmummy17]

Purple I'm so sorry to read this sweetheart xxxx

[WhatWouldLeslieKnopeDo]

Oh no purple I'm really sorry it was such rubbish news. I hope you can get on a trial. Will he know either way when you see him in two weeks, or will that just be when you start applying to any that might be suitable? (Sorry, I haven't done trials, so not entirely sure how it all works). I hope your BP and heart rate calm down soon so you can get home I always used to think that too. One of my most-used sayings is worse things happen at sea. But actually what is happening to you is utterly shit. Just because it could be worse doesn't mean you can't feel sad or angry or scared. I'm not surprised you're fed up and scared. Have they offered you any support? Is your husband with you? I wish I could do something more than just typing words on a screen

[ranoutofquinoaandprosecco]

Oh @purpleunicorns that f*cking shite news. Fingers crossed they can get you a new plan in place. I hope you are a bit more comfortable and hopefully going home soon, if your not there already?
I'll catch up with the thread properly later but I'm 42 2 DCs of 5 and nearly 8 (it's her bday on Friday!). Was dx with breast cancer last July. I'm not sure what type all I know is is slow growing and measures 50mm x 50mm. Finished 6 rounds of chemo on 27 Dec. Had an MRI a few hours ago and am now waiting a date for a mastectomy.

[Namechangeforthiscancershit]

for purple. Is someone there with you?

I had a meeting with one of the trials nurses to explain what would happen if I was suitable at some point, and they definitely do try really hard to find trials.

Not surprised that your heart rate and blood pressure are up...

[KnickerBockerGlooooory]

Hi I'm 45 with 2 girls age 12&14. Dx with breast cancer in May 18 followed by lumpectomy and radiotherapy. Dx on the other side in September 18 followed by mastectomy on Nov 1st and just had second round of chemo. Hoping to get my second mastectomy in late summer.

Hello to the newbies and welcome xx

[KnickerBockerGlooooory]

Question for any lacies out there rocking the no hair look. Do you find you still have some little stubborn patches still growing?
Also any views on getting a wig. I have 2 big trade shows coming up for work but can't decide if it's worth investing in one for effectively 8!days wear... or to stick with the scarf/bandana option. I just feel like I'm waving a sign that says 'yes I have cancer'! Still at least the well meaning folk can tell me 'but you look very well'

[Wombat22]

purple that it such shit news. Fingers crossed a trial is possible and I hope you get home soon. What a crap few months you've had

I'm Wombat. I was diagnosed with lung cancer in Dec 2017. In Jan 18, I had an upper right lobectomy and removal of lymph nodes. I was very lucky that there was no spread and I didn't need any chemo/radiotherapy.
Some other things were found along the way, but nothing major. I am currently 'cancer free' and unless anything changes, I won't need any scans until October.

I don't post very often, but I am so invested in you all, that I still lurk a few times a week.

[mrsrhodgilbert]

Hi, I’m 54 and was diagnosed with breast cancer in 2014, a month after my 50th birthday. I’ve had a lumpectomy, clear snb, 15xrads, tamoxifen and now after a further operation to remove my ovaries I’m on anastrozole until the summer. I’m not around much now but do read and post occasionally, very happy to help if I can.

purple I’m really sorry to see your latest post, you’re having such a tough time.

ranout I did go to the haven in Leeds about three years ago. I was having side effects from the tamoxifen and signed up for some acupuncture after an initial consultation with the lady who ran the centre. Sadly I really didn’t like the lady who was due to give the treatment, she tried to give me a counselling session first which I was absolutely not up for and I ended up walking out. It felt very invasive and insensitive. I’m sure I had a very unusual reaction to it though and you’ll probably find it very helpful.

[Mrstraveller]

Hi

I am 51 diagnosed with breast cancer July 2018. I have never been told the stage and haven't asked but based on the knowledge I have now and the treatment plan, I would say Stage 3. I have had 7 rounds of chemo and mastectomy and removal of all lymph nodes on left side scheduled for next week. This will be followed by radiotherapy.

The thing that has made my diagnosis more horrible for me is that my husband's first wife died of breast cancer about 20 years ago. I feel guilty that my husband and step-son are going through this again for the second time. Obviously treatments have improved a lot in 20 years and I am hoping for a different outcome for me..just seems so bloody unfair but I know all of us must feel that way at times.

purple sorry to hear your news and that you are in hospital again.

[KeepCalm]

@purpleunicorns I wish there was something more practical I could do but as there isn't I'll send lots of positive thoughts and swear a lot in your behalf 

@Wombat22 that's great you're all clear. I have BC but mets in my lungs which apparently isn't curable but treatable. I'm presuming that's different to yours.

Oncologist apt was an hour long due to my stupid questions but she's very patient & lovely bless her.

Today was a bit of a mixed bag to be fair.

CT hasn’t shown anything ‘new’ but mets on the lung have grown.

My cancer hasn’t reacted ‘typically’ to the treatment so we need to keep looking for a solution apparently.

They’re desperate to get the lump in my breast under control hence the op ASAP otherwise they’ll loose control of that.

I’ll probably go onto oral chemo called Capecitabine as soon as am well enough which (if it works) will be a life long thing but easier than other forms.

She’s holding back several other forms of chemo and radiotherapy in the hope that the oral one will work.

But seeing as this and the one I’ve just been on are the ones that triple negative cancers are most sensitive to she’s realised nothing with me is going to be easy.....

I’ll be scanned from now on every 3months but at least CT scan and not MRI

She told me that planning to be here next Christmas wasn’t ‘unreasonable’ 🙄

DH has told me I took that part out of context

[Tahitiitsamagicalplace]

purple sorry you got such shitty news. I don't even know what to say except I hope you get good news about trials XXX

Hi, I'm 35 with two dc, aged 14 and 4. Diagnosed with Hodgkin's lymphoma (a type of blood cancer) 3 months ago. Currently going through chemo and I'll find out on Wednesday if it's working properly! Fingers crossed.

Hi to everyone

[Pandoraslastchance]

I'm 32 and was diagnosed with stage 3 invasive ductal inflammatory presenting breast cancer in July 2018. It's also in my lymph nodes. My cancer isn't a lump it's more of the whole of my breast, chemo hasn't shrunk the fucker but it also hasn't grown.

Completed 6 cycles of chemo, awaiting mastectomy and lymph nodes clearance on the 17th jan. Then radiation and back on the chemo.

Also got heart failure thanks to the chemo drugs.

Got 3 dd, 14, 5 and 4.

Got a pip assessment next Monday. Should be shits and giggles.

[KeepCalm]

@Pandoraslastchance same date for the ole boob job here. We can send each other positive thoughts x

[WhatWouldLeslieKnopeDo]

KeepCalm I'm sorry it was a mixed bag. It sounds like she is a good oncologist though. I have had capecitabine (also used for bowel cancer). It wasn't too bad

[WhatWouldLeslieKnopeDo]

Lovely to see you Pandora how are you doing?