May 2017 chemo starters

[WolfEE]

Are any of you having ovaries removed? I think it is something I will do I am seeing them again in six months time to discuss. My mum had breast cancer (she didn't make it died when I was 11years old) her mum my nan had overian cancer at a young age sadly she didn't make it either.
I had genetic testing about 15 years ago at oxford and didn't have the BRAC geans but they did believe that there was some kind of genetic fault but without a living relative they couldn't continue (now I guess I'm the living relative) I will be seeing the genetics team again next week. I have a twin sister so I worry so much about her as we are identical twins one egg split in2 two there for exact DNA so now I worry about her and my younger sister so maybe now I can help understand this genetics thing and we can look at how to keep them safer.
I do worry about ovaries and early menopause and consequences of that because I'm 37 but I need 2 do everything I can to prevent this coming back. I'm ER and PR positive

[treehouse]

Hi misyangel. I am ER neg so not oestrogen receptive. HER2 is growth hormone as I understand it. Waiting for genetic tests to decide on extent of surgery. Personally I am happy for anything to go if it reduces my future risk.
Have you already had surgery?

[misyangel]

Trish and Treehouse with you both being HE2 Positive, did your oncologist recommend you having your ovaries removed as well,  mine did as she said with it being hormone driven it would reduce the risk of of it coming back, wondered if yours had recommend the same

[treehouse]

Sending thoughts and prayers to London 💙

[treehouse]

Lol. That's hilarious. My youngest is watching swallows and amazons and told me I am his pirate mummy. Pointed at my scarf

[katie11]

Hope you have all had a good day ladies!

Do any of you ever feel like you are having surreal moments through all this? Just had another one whilst washing my human hair wig for the first time which was odd enough but then I decided I didn't want to wear it whilst drying it so I have borrowed my son's giant tigger the tiger bear and am now sat on my bedroom floor with tigger wearing a wig whilst I am drying it! Wtf! Xxx

[Trisha69]

I was diagnosed on 21st April, had 1st Chemo 25th May.  No hair loss as yet, but have bought a wig, a turban and scarves.  Only symptoms to date has been really sore throat (better now)  Constipation (Sorted!)  And the tips of my fingers on left hand the skin keeps peeling.  Using loads of E45

My mum had HER2 positive back in 2000.  She lives in France and she had a mastectomy and reconstruction.  She then 2 years ago at age 69 developed Bowel Cancer and has a colostomy but in remission but they cant reverse the bag/

I will private message you my email if you would like to 'Buddy up/?  Is that allowed on here?

Trisha x

[treehouse]

Some dates you don't forget. Diagnosis April 5th. First chemo was May 8th. I am definitely coping better second time. I had lots of questions for my mum. She showed me Everything. Strangely I don't want her to see my hair yet. What's that about?

[Trisha69]

Sounds like u have a busy household! My girls being very supportive but they live miles away. The two youngest coming visit next weekend. Whay date was your 1st chemo?

[treehouse]

13 and 11. And my step kids are 14 and 11. I love our crazy blended family 👪😁. How are your girls coping? I know my mums cancer had a big effect on me growing up. She had double mastectomy in the end but no reconstruction. Really changes your perspective of body image. I have massive respect for her choices as it was different 30 years ago.

[Trisha69]

How old your boys? I have 3 girls. 23 21 & 15 x

[treehouse]

Sounds similar just a bit larger. My nodes were also clear.

My boys have just come back from their holiday in Spain. So happy to see them. Best medicine. They seem ok with my headwear. X

[Trisha69]

Its all a blur. Thinks they said grade 3 and its 3.3cm with no other abnormality and no abnormality in the lymph nodes under the arm. (reading that from letter got a month after diagnosis! )

[treehouse]

Hi Trisha and missyangel. I am grade 3 her2 pos IDC about 9mm . I get all 4 drugs on treatment day. (2 for her2 pos first then 2 chemo) yes it takes ages 😝

[Trisha69]

They have said Herceptin on cycle 4 along with chemo and I think perjuta x

[misyangel]

Treehouse how big was your lump and do you know your grading, sounds like we are very similar, except I have 8 chemo but only an hour long, aren't yours longer sessions.?

[Raitchr]

I had grade 7 first as it was in a chin length bob, angled shorter at the back. Grade 7 was fine and it was looked quite good, was cut last Saturday. But it kept falling out in clumps after 2nd chemo on Thursday especially when I washed it.  Grade 2 is quite severe for me and now I look like a chemo patient but glad I did it in stages. Still using anti dandruff shampoo as my scalp feel itchy and a few days after 1st chemo my scalp just felt horrible so continuing until hair is gone. I am not having a wig, just using scarves and chemo caps and a lovely sun hat.

[Raitchr]

I wear a chemo sleep hat at night to catch the hair. I have 2 so I can wear one and wash one, very comfortable but a little bit at the moment. 

[treehouse]

Have a lovely day Rosie. I will brave the shave this afternoon.have been wearing a scarf for 2 days and fed up of fall out in bed. It is time. Will let you know how it goes. X

[treehouse]

Hi missyangel. That is what I am on. 6 lots of Herceptin, pertruzomab (perjeta), carboplatin & docetaxel. Then Herceptin injections for a year. Yes heart checks every 12 weeks for a year. But fingers crosses.

[Rosie65]

Well done Raitchr  was going to ask you about having a Grade 7 cut first?

I have booked appt for tomorrow. The lady is opening the salon specially for me. She will also trim the wig to make it less full.

Aaah periods!! I had a risk reducing oopherectomy 3 years ago at age 48, best thing I did. Believe me ladies after going through chemo the menopausal symptoms will be a breeze and no more periods. Yay

Throat appears to be under control and at least I now have a well stocked medicine cabinet

Off for a pub lunch with a friend now. Last day with hair so have suggested pub garden away from other diners so they don't end up with a hairy lunch!

[Raitchr]

Braved the shave again this morning, gone from grade 7 to grade 2 as still falling out but was patchy. Feels better but I know it is all going to go eventually!

[misyangel]

Treehouse I am her2 positive, I am not getting herceptin until 2nd lot of four chemo along with the Pztubuoes drug not sure if that is how you spell it, but I had to have a heart scan to get this drug and they have to apply for funding but people who have had this it can reduce in some cases the cancer to nothing. 

[treehouse]

I am 43 and Her2 pos. Are you on Herceptin? I thought I was the only one.

[Trisha69]

Last year I was having really heavy periods and in Jan this year I had a Polyp removed.  So since December 2016 I have had one period that was light and that was in April before chemo started.  So hoping thats it all over with for me too!  I am 48 and HER2 positive. Trisha

[treehouse]

Trisha you sound like a woman on a mission. Good for you. I am the only one up enjoying breakfast in the conservatory as eating stops the nausea. I am sleeping fine but I think I wake my husband. The kids are still in bed. Getting to that teenager stage 😁

[Trisha69]

Thanks Treehouse.

Had a lovely evening at a girlfriends house, slept quite well and we off to clean 2 holiday lets, will take it easy and relax in the shade this afternoon x

[treehouse]

Morning and sorry for bedtime rant. It is some sort of phantom period. Wish it would do one thing or the other. Well done Trisha taking control but try to keep your stress down. I really hope you have people with you. Sunny day determined to make the most of it x

[Mai7]

Raitchr, Treehouse, I had a period after my first treatment which was heavy and lasted only 3 days. My main concern was oestrogen increase when I'm oestrogen positive and blood loss affecting my red blood count.  No sign of another one yet so hopefully my ovaries are now dormant. Like you, Raitchr, at 48 I'd be happy for the ovaries to stay dormant. Prior to chemo I had a mirena coil fitted which had stopped my periods for years so having that back again was not a welcome visitor.

Have a lovely weekend everyone! ☀️

[Trisha69]

Thanks Heather x

[Trisha69]

Thankyou MissYAngel x

Went to his flat at 7am with my spare car key and retrieved the car!!  Would love to see the look on his face when he looks out the window and sees its gone!!

[Raitchr]

Mai7, had surgery, only had SNB not full clearance. Hospital policy was antibiotics to avoid winter bugs they are carrying on as seems to work to prevent hospital admissions for IV antibiotics.

Treehouse, I had period last week although it was part of my good week. Assuming next one will be last one from what I have read as after 2nd chemo they stop. However everyone reports it to be the worst, heavy, most painful they have had. Some get them back after chemo but for me at 46 I don't care if I never have another one!

Just had my 3rd Emend this Morning in the 3 day pack. Can honestly say yesterday didn't feel sick at all and I helped prepare tea. Felt a bit burpy/acid if I laid down but can manage that.so looks like it is being managed. I have also got Ondansetron which I take lunch and 4pm just as a back up until I finish steroids tomorrow. Have taken Emend and steroids just now with water and 2 ginger biscuits.

Constipation, so far so good. Took one sachet of Laxido (Movicol) which GP gave me just to get things moving today. Wasn't constipated yesterday or day before but on last cycle was on this day (day 3) so thought I would gently get things moving to prevent any blockage. That worked this morning that's why I am awake at 6am.

Sleeping meds, didn't use them last night, thought I would try last night without. Slept all night until the toilet trip.

Feeling I may have got most of the side effects under control. Hoping bad mouth on day 5 can also be avoided by the mouth wash and honey.

Hope everyone else is feeling ok. I keep thinking it is Sunday as the boys have been off school on half term.

Enjoy the weekend.

Heather

[Mai7]

Oh dear Treehouse, sorry it all seems to be going wrong today. It's not a fun game but we have to play it to get better. Hang in there and I hope tomorrow is a bit better for you. It's late and everything feels worse when you're tired. X

[treehouse]

Chemo, side effects, injections, hair loss, feeling sick & periods....bloody stupid game this is. 😉

[Mai7]

Rosie, Ive found it easier wearing the wig with head shaved, otherwise you have to keep tucking bits of hair in.

Raichr, Check you out, getting the best goodie bag from the chemo party!  I've never been given any antibiotics but I haven't had surgery yet either. Did you have lymph removal also?

I just said goodnight to Lola (wig) and put her away in the box and tomorrow we will face the day again together!  Sleep well everyone.

[Raitchr]

Forgot to say my chemo goodie bag was stocked with another 21 days of antibiotics, anyone get these too? I have started using the Diflam mouthwash in anticipation of a sore mouth, along with my trusted manuka honey. Also got the next Emend 3 tablet pack for next cycle in advance.

Off to bed as fell asleep 5 times trying to watch tv tonight, what a lightweight!

[Rosie65]

Annie A   I cold capped twice, although the second attempt was a bit half hearted. I kept loosening the strap and it didn't get plugged in straightaway after I'd been to the toilet. Was ok after the first one but is shedding loads now. I still have hair - I had a blonde bob at the start, it is now a complete stringy mess with small bald patches. I have started to look at the wig quite lovingly now.

It seems pointless having hair if it looks so awful so I think I'll get it cut short.  Does the wig look ok if you still have hair underneath or is it better to shave  the hair and be done with it?

Have only had manual measurement of lump at onc appt. He said it was softer and 0.5 cm smaller so I was happy with that. Will see him again on Monday as I am on two weekly cycle (why oh why!!!) so back for 3rd dose on Thurs. Am still suffering with mouth/throats ulcers so not looking forward to another chemo session.

Oh and genetic results are back - I have the mutated BRCA 1 gene. Doesn't make a big difference to me apart from strengthening my case to have bilateral mastectomies but my (unaffected) sister, niece and my daughter will now be tested to see if they've inherited it.

[misyangel]

Trish69 so sorry for the attitude you have had off your partner,  I think going through something like this gives you a whole new outlook on life and life is to short to waste time on people like that.  You vent on here as much as you want - sending big hugs

Skells you will be fine on this thread, I have another 6 treatments to go so will be with you on this journey.

Wolfee thanks for the wishes.

AnnieA I asked my oncologist and she said I won't get scanned until he end of my treatment. she examined my lump and said it felt a lot softer so think the chemo is doing its job.  I am hoping she examines me every three weeks.  I was a bit disappointed not beng scanned until the end as was hoping for one half way through like i Have seen other people having.

Well second one done, the lady who put my caular in did a fantatic job and was so loveley she is going tor try and do my next sessions as we had so much in common, I am a very spiritual person and she was to so it was great.  She also put an extra saline in which has helped with the feeling drunk as last time my husband and fmaily said i was slurring my words but not had much of that this time. Only difference I have found is had a sleep then felt really nausea when I worked, but had no sickness last time.  I have had the emded drug.  The sicness has passed after a couple of hours.  Not looking forward to the 5days of injections tomorrows at all

[Raitchr]

You can bookmark any thread so you can go straight to it and see new posts, I do this on my tablet not sure how it works on phones. It is in the options box on right of posts.

[Raitchr]

Sorry chemo brain and fat fingers on a tablet don't work well, or I need glasses!

Have corrected now, should be well!

[treehouse]

I know it is hard not to worry wolfee. Big hug. Mine looked like a baby head. Have now changed it to a bald person in specs. Best I can do. I may put a scarf or beard on tomorrow 😊

[WolfEE]

Yes changes the head but now everything looks different and doesn't fit on my phone screen plus I don't know how to find out thread quick now that will teach me to go clicking hear there and everywhere in settings!! Bearded icon lol that's about the single side affect we don't get thank god.
I sort of hope it is a cyst that sounds less evil than the other possibility I really don't know what to think I'm trying now not to think about it until the 7th but it's difficult. The nurse said it doesn't need imidiate action like draining or anything?????

[Mai7]

Raitchr, is the "oil" feeling "ok" or "ill"? Glad you have your laxative army at the ready for a staged attack! 

[Mai7]

WolfEE, you obviously found the setting to change the boy head?! I saw a female profile on here which had a beard and was thinking, wow is that like some hint at the side effects from the hormone therapy they give you! Your new lump sounds like it could be a cyst but, hey, I'm no doctor so just intuition and guesswork!

[Mai7]

AnnieA, I asked my Onc the same question at my last appointment and was told I won't get another scan until after the full 8 rounds. In the meantime they just have a look and measure the tumour manually.

[WolfEE]

Just noticed next to my name I have a little profile pic a small head we all have them but mine is a boy head?? I'll have to have a look if any settings so I can change??

[WolfEE]

AnnieA, I'm interested to know the same thing. Friday just gone I discovered what appeared like a new lump but it's on the outside (and inside) I don't know how to explain it sort of looks like a blister but not it's raised but I can feel it also under the skin. I panicked because I keep thinking what if the chemo isn't working (it will be I'm sure just my paranoia) the nurse at the clinic told me to come in and see her when I showed them she said it could Just be a reaction from the chemo but she will ask a doctor to see me after bank holiday on Tuesday. That never happened I had a call Wednesday saying keep my scheduled app that I already have on 7th June. So they cannot be overly concerned but it doesn't help me I'm still worrying.
I would feel much more at ease if we get a scan or something so we can be told or see if or how we are responding?

[Raitchr]

Hi everyone feeling well so far, had 2 x 30 mins naps today then will have an early night. Taken all my meds plus a Laxido (yucky taste) hoping tomorrow I will not start to be constipated like last cycle. I have stronger capsules for later if no progress. Hair is getting thinner, think I may go for a shorter buzz cut over the weekend. 

Trisha69 so sorry to hear about your partner, you need some good support going through this, sending a hug.

Heather

[treehouse]

AnnieA I was told scan at half way point. I am sure it is shrinking but no one else has had a grope to check. X

[AnnieA]

Sorry ladies I have another question for anyone who's doing chemo before surgery. Will I get a ultrasound at some point during my chemo to see if the Tumour is shrinking ? Xx