Cancer Support #70. Please post on this thread, not #69, If you have cancer or are undergoing tests for cancer. Rant, rave, scream, cry – whatever helps. Supportive lurkers for Leslie welcome on #69.

[TwitterQueen1]

Thread #69 is filling up with messages of support for one of our own who is very seriously ill. Leslie told me a few weeks ago that she didn’t want any such messages to get in the way of those who need support through their cancer treatment so we are starting a new thread just for those who do have cancer or who are having tests. Could we respectfully ask lurkers and supportive posters to confine their comments to thread #69? Thank you.

We normally start with a brief introduction to our cancers – I’ll kick off. Ovarian cancer dx March 2017. Now on third-line treatment with a trial providing targeted and chemo drugs taken orally.

Yes, please do let us know how you get on! How have you been coping with any other side effects?

Hi Meerkat sorry you find yourself here.
Just to say that I cut my hair short (pre cold cap as had heard it made the hair less weighty, but have since heard that the length of hair doesn't affect the cold cap)
I cold capped for 2 chemo's. It didn't all fall out, but went really thin at the front. I found this more distressing as looked awful (not sure it helped in that my hair was short, so couldn't disguise it at all) I shaved it off at that point and was much happier as a result. I thought having a bald head would bother me way more than it did. I had headaches with the cold cap and the first 10 mins or so I found excruciating, but after that your head sort of goes numb. It does mean you are at the hospital alot longer too if you cold cap. Good luck with it if you try it.

Thanks purple will send you a pm when I have the sponsor form set up.
Glad your Mam is getting in touch with a Macmillan forum, I hope it helps her.

bitoffun I'm sorry, I have a different type of BC. My tumour was removed in the op, but before that, after chemo, it went quite tender in that area and not hard. Not sure it is comparable though. Can you give your consultant or BCN a call to reassure you?

Sorry you are feeling so rotten snow am bloody impressed you were off shopping so soon after chemo. I don't think I ventured anywhere much. Esp on the 1st type (EC) as it was accelerated & so was given fortnightly and I felt constantly nauseous for those treatments (over 6 weeks) I def internet shopped then!!

Waves & hello to everyone, hope you have a good Friday. It is the Easter bonnet parade this morning for us at school

Fantastic news about your mammogram too Freddie you must be very relieved.

meercat hello and welcome to this lovely group. Sorry you have to be here though

I only had 4 rounds of chemo but I used the cold capmand am glad I did. As noodles says, the first 10 minutes are excruciating. I found that taking a 30mg codeine tablet 20 minutes before I put the cap on helped take the edge off the pain but it is still unpleasant.

My hair has thinned a lot, but all
Over rather than in patches. I have about 50% left I would guess. I am now on endocrine (hormone) therapy and that’s not helping with the hair thinning.

Mine was halfway down my back so I popped off a few inches (well, DH did, bless him. I thrust the scissors at him and instructed him to cut. You have never seen a man so terrified )

Paxman (the main manufacturer of the cooling systems) have a helpful Facebook group and a separate page. Their website is also helpful.

Good luck xx

Sorry for typos. In a moving cab 🙈

Snowsinwater Yes please to letting us know how it goes for you. I am almost certain that I will be using the cold cap. I think I am older than most of the posters here and while I have in real life seen some amazing women who decided to brave the bald and even looked beautiful while doing so, I cant face being old and bald.

Purple. I am sorry to hear what you are going through. Thank you for taking time to answer me and others. To answer your question, yes I do have great support in real life but I have chosen to only tell very few people yet.

I have another question if that is OK. I have been reading the vast amount of stuff they gave me on Paclitaxel and Herceptin and the various others things they say I will need. Some of it lists weight gain as a side effect and weight loss has also been mentioned. For those who have also had/are having the 12 week Paclitaxel and 3 week Herceptin regime, what did it do to your weight?

I have struggled with my weight for most of my adult life and having just recently lost a couple of stone and found some sort of control I would like to be able to keep managing it.

I seem to be focusing on the most superficial things but I don't want to lose myself in all of this if that makes sense at all.

Hi Meercat - I’m afraid I can’t answer your question, but I just wanted to say that your question doesn’t seem superficial at all. I’ve been coming on these threads for a few months now, and no one will judge you for what you ask.

(I’ve just started immunotherapy as I had melanoma, which is very different treatment , so I’m no use at all to you!)

Meercat - I understand what you meant about not wanting to lose yourself and it's fine for your weight to be important to you. When I was diagnosed and thrown straight into chemo I lost weight and went to about 8 stone, 11 pounds which would have been underweight for my height. I had Herceptin with chemo and am now on 3 weekly jabs. I have put on about a stone since my diagnosis in July but I am also on anti-depressants, a side effect of which is weight gain, and over the last 6 months I have eaten a lot of cake and biscuits with very little exercise. So yes I have gained weight but in my case anyway I don't think this could be isolated to Herceptin as the cause. I don't think it's a given that you will put on weight with Herceptin and I have not been told that this is something I should expect. Don't know about the other drug as I don't think I've had that one

Mrstraveller Thank you for sharing your experience. The literature does indicate that different drugs work in different ways so I guess I will have to wait and see. A bit of weight loss might be a bit of a silver lining for me. Just could do without putting back the weight it was such hard work to lose but if it happens I will have to deal with it.

Someone said I might have some useful info for people. Perhaps. Though of course what's useful varies from person to person, and situation to situation. I'm definitely not a medic, so absolutely nothing I write here is medical advice, and none of it is designed to stop people relying on their teams for actual best advice. But being a geeky sort, I have spent the eight years since my own breast cancer dx reading oncology papers for, er, fun (not the right word). Not only on BC, but on various sorts. So I tend to get the info papers the same time as the oncologists do. Sometimes there's useful info to be found in them for people, so they can chat with their teams about options.

Mindful of people new to (for example) breast cancer, and remembering how knee-knockingly terrifying it was to be told that it was indeed cancer. Or, more specifically, how knee-knockingly terrifying it was to wait to be told that it was cancer. And then wait for each new test result to find out the bad/good news. In fact, every annual checkup is still pretty terrifying, even though mine has been invisible since treatment (and long may it stay that way).

Generally, cancer treatment is improving and improving. This is zero consolation for those whose own treatment has failed, or who weren't able to tolerate particular treatments, of course. And ever mindful of those who shared our lives and are no longer here.

What do we mean by improving? For a start, the chances of dying from finding a lump in a boob are now about 1 in 100 for some types and sizes. More and more people are living with even the sort of cancer that won't go, as a long term nuisance, year after year of extra pretty normal life, rather than a reason to reach for a 'What Hearse' brochure (Summer edition). Annoying, unwanted, but fairly tamed.

So whilst not for one minute suggesting cancer is fun, or that everyone has a rosy future ahead, there's improvements and new treatments happening faster than I can read them now. More than 17,000 new bits of research last year, on breast cancer, for example.

Very glad of the teams doing the research, and of course the teams giving out the treatments, and what they're managing to achieve for so many people.

Thank you, Amber. That's just the sort of information I meant when I wrote to Leslie. We tend only to hear about the sad cases and there are still far too many of them. (So sorry to hear about MAS, who founded this thread.) But I recently had lunch with an ex-colleague who was diagnosed 15 years ago, when she noticed a lump under her arm while playing her guitar. Mastectomy, chemo, reconstruction. She's just retired and is having the time of her life on the other side of the world.

I appreciate, too, your remarks about the knee-knockingly awful times waiting for results. I've been incredibly lucky (Borderline Ovarian Tumour), fingers crossed - I'm still being monitored, but will never forget the six weeks I spent pre-diagnosis.

Best wishes to everyone else, especially Leslie, Purple and TQ.

amberlight have you come across any recent research papers on Inflammatory Breast Cancer? Both BitOfFun and I have stage 4 IBC and we are both in a bit of a turmoil about it. Would be good to see if there are new/ recent research papers, particularly into hormone positive IBC

thanks xx

LondonHuffyPuffy Not a huge amount in the last few months.
The best of the last year is probably link-springer-com.hallam.idm.oclc.org/article/10.1007/s10549-018-4715-0 which is a whirl through best options for IBC mets.
Their top tips were having surgery that gets the whole of the main IBC out with clear margins, having HER2+ IBC , and/or having hormone-positive IBC, and having additional therapy (chemo, hormone etc). So basically chucking everything possible at it. By the look of the data, a good combination should push people well into the 5 yr plus survival bracket. Data from 2010-2013, so procedures and options will be gradually improving from that also.
Not sure if that helps, but looks like they're getting a better idea of what's important.

Not sure if that link is going to work. www.ncbi.nlm.nih.gov/pubmed/29460033 may work better. Paywall, but have full article here.

Thanks amberlight
I can’t get to the main article but the summary is enough for me to initiate a pushy conversation with my Oncologist about surgery!

This is completely inappropriate and not the place for this kind of spam.

@KNGemin8682. Kindly read the thread before posting. This is a safe place where people suffering (and DYING) from cancer can express their fears, ask questions and offer help to others. It is NOT a potential money bank for you to trawl. angry]

@TwitterQueen1 does that mean I can't borrow a fiver

Well I'm a tightwad generally... but OK... since it's you....

But for any lurkers who are themselves being tested for possible cancers, you are also very welcome. Indeed the scanxiety of the earliest days when you don’t quite know what’s up, can be right up there amongst the most stressful.

Ooh what did that person post?!

I have a potentially frivolous question...

Can I get piercings and tattoos whilst having treatment? I am almost done with rads. Done with chemo for now so presume my immune system is ok? Moving on to endocrine therapy. Have already started letrozole and zoladex. Also having Zometa for bones. Is there any reason why I shouldn’t get another tattoo and also have my ears and nose re-pierced?! Aesthetic beliefs/ feelings aside. I know body adornments are not for everyone.

I am having a mid-life crisis, obviously. I want to have lots of holes in my ears and one in my nose like I did when I was in my 20s. I want to tidy up my current tattoo and get a new one.

I figure I don’t have too many years to mull this over since I am stage 4 🙈

If you have a specialist nurse, check with her. If you’re at a stage in treatment where they really want you to swerve any avoidable routes of infection, then you may be asked to wait. But I think it’s OK when you’re on an even(ish) keel

London you might need a doctors note to say you can have a tattoo, I know you do for some kinds of complementary therapies. Any idea what tattoo you want? I've always wanted one but I'm far too indecisive although I did used to have my tongue pierced, I wouldn't recommend it as I think I cracked 3 of my teeth on it

London I have IBC as well (Stage 3). It has all been a bit of a roller coaster but from the start (it's hard to believe it is only a few weeks since diagnosis) my treatment team have been clear that I will have 8 rounds of dose dense Chemo (every two weeks) followed by surgery (options to be discussed nearer the time with my surgeon but it's pretty clear that I will have at least a right breast mastectomy) followed by radiotherapy. None of the three stages of treatment have been presented to me as optional. I am in Australia though so I have no idea how much treatment differs between countries, you would hope that there would be some kind of consensus on best treatment no matter where you live. I think I am lucky in that I am attending a University hospital with a lot of research going on and a multi disciplinary team approach but tbh I am relying on the experts as it is all such a shock.