May 2017 chemo starters

[Mai7]

Jay and I met for real this morning!  It was so lovely to meet you Jay and felt quite surreal. 

Im day 4 so my tongue is slimy and I don't know what to eat.  I've just had a snooze and am gearing up to put some food in my mouth. My partner has gone out in search of Bombay Potatoes!  

[WolfEE]

If your throats starts hurting please report that quickly. I did have IV antibiotics that may have started from throat infection but as Annie has just mentioned I did have a high temperature 🤒 this was after my 1st T and I ignored it a day because I thought it was a side affect. X

[Anniej]

Hi Soworrid, never had a cold, thank goodness. Told, very firmly , by chemo nurse to report any such as would likely not do chemo. Any slight infection gets hold very quickly and escalates rapidly - apparently. Are you checking temp twice daily? Chemo nurse will ask for last reading when you phone alert line number. If you are feeling grim I would phone and ask for advice. Best wishes. X

PS. If you have taken paracetamol your reading will be compromised as it lowers your temperature. Need to be a medication free reading, I'm afraid! 

[WolfEE]

Morning Soworridl, hope the treatment is going ok for you so far (as well as it can do)
I never got a full on terrible cold but on one of my earlier cycles my sister who I live with got a cold and I always catch them from her. We avoided sitting near each other she was extra carful washing hands, sneezing into tissue and she sat herself by the window. I had a recommendation from a lady is this group to use 'thieves oil' I went on amazon and got myself a humidifier burner thing and some oil and we started burning that (I was on FEC at the time I'm not sure how it would be in the T as my smell was very sensitive) if you have a read up on it they say it can help kill cold bugs and I believe it worked it is now something I will continue using going forward. It has a nice smell almost a bit Christmas. I ended up with slight sniffles that luckily went a day or two before my next chemo.
I'm guessing coming in2 this time of year colds will be unavoidable I've heard treatment can go ahead with a cold but I've not been told this by a nurse just chit chat between myself and others on the chemo wars whilst we have been chatting.
Have plenty of rest keep drinking and stay warm and try and get yourself better. Xxxxxx

[Soworridl]

Hi may 2017 group. I'm from August 2017 starters... wonder if you can help me...

Any of you had a cold when she next treatment. I'm due next one Wednesday and have a cold :(. Did it still go ahead?

Also what have your experiences on dosataxol been?

Many thanks x

[MJK]

The Cotswold manor house sounds fantastic. Your tastebuds should be ok by then and hopefully the weather will be kind too.

We're booked into the Novotel in York next weekend (complete with pool). It will be a lovely family break and of I need a rest hubby and small boy would happily wander around the National Railway Museum all day...

I hope you get to have that lazy weekend in a posh hotel soon Tatyana.
And everyone else for that matter. X

[MJK]

Well done Trisha 🕭 it's great to have that behind you.
I have a grade 1. Hubby says I'm 'within a hair's breadth of militant feminist'. It's growing evenly which is good. My eyelashes and brows are only 2mm.

[WolfEE]

I have hair on the back and sides but not really growing around the front or the top. I hope it will start evening out or I'll be looking like a monk!!

[treehouse]

Not much regrowth for me yet 😕

[misyangel]

Yeah Trisha on finshing injections and sounds lovely going off to carnival.

Treehouse you lucky thing, how amazing to have a night in a manor house.

Mai7 I am pre-menopausal, hoping they will check my levels the same as you.

How is everyones hair growing, I have a good covering on my head now,  my eye lashes have started to fall out on the tax.  I have bought some revitalash to start using once chemo is finished.

[Trisha69]

I rang my bell again at 330 last injection 🙂
Now spending the eve with a girlfriend. Local carnival procession on. Cava and woodsmoked Pizza on the menu!x

[tatyana]

Treehouse, that sounds wonderful, have a lovely time! My oh said today that he's planning to take me to a posh hotel for a lazy weekend as soon as I'm in a place to enjoy it. So do let us know if your hotel is nice!

[treehouse]

Booked a romantic night away in a Manor House in the Cotswolds next weekend.
😀😀😀😀😀😀😀😀😀😀😀😀
Very excited just hope I can enjoy dinner

[treehouse]

I think quicker recovery time and less chance of implant moving due to your movements. Also supposed to look more natural. But I am not sure how well tested the mesh is ( it is made from material derived from cow or pig skin and becomes part of your body)as I know mesh used for pelvic surgery has had bad reviews recently .
There were advantages but I decided to stick with what has been tried and tested.

[Mai7]

MJK, you've totally messed up your variables by trying to measure two at once on your own clinical trial! Glad it's working for you though. I guess, just keep wearing the bracelet and drinking the tea! 😀

WolfEE and Treehouse, it looks like behind muscle is standard then but may vary from one hospital to another depending on surgeons experience? Treehouse, what were the advantages of method 2?

[treehouse]

Mai I was told there are 2 ways to put in the implant. 1 under the muscle.
2 over the muscle in a mesh.
No 2 is a newer method and is not available in all hospitals. I was offered both but decided to go with method 1 as that is what my surgeon is used to. If I opted for method 2 it would be with someone I have not met in a hospital 30 miles away and she has only done it once or twice.
I trust my surgeon and don't want to be practice for someone I don't know.
( sorry if that sounds bad)

[WolfEE]

Mai, my sister is having double mastectomy the day after my op. The plan is reconstruction at the same time. However, they said small chance she may wake up and they have had 2 use the tissue expander if the skin wasn't working as it should. I believe the expanders are more for the skin. If having recon right away the shape in the chest wall and muscle etc is still in tact.

[WolfEE]

MKJ - good news the flushes are under control. I'm going 2 start the sage get used 2 the taste and on pay day will buy the magenet so I feel safe knowing it's there waiting. I'll probably start using the magenet once on the tamoxafen and the flushes have kicked in.

[WolfEE]

Mai7, I don't think the expander thing goes behind the muscle (I'm not 100%) I believe it sits against the chest wall somehow keeping a nice shape for the reconstruction??? I won't lie I think for some people it can feel a bit uncomfortable I think you are always aware that it is there. Most people get used 2 it and say it's fine but some struggle with it????? I'm hoping I have another app soon 2 discuss further because I don't fully understand and I still have many unanswered questions. My pre-op is Tuesday and then surgery end of the following week so really I'm running out of time!????

[MJK]

Well done on the end of injections Treehouse and Trisha.

You shouldn't need injections after surgery. 😊

Hot flush update. I unscientifically started the sage tablets and magnet at the same time. I therefore don't know which one is working. But the sweats have gone. 😊
I still ached last night but I'd forgotten to take the Claritin.

[Mai7]

Just delivered my Son to Uni and left him surrounded by boxes, beans and pasta etc!

i just counted up my injections and by the time I'm done I'll have had 50 injections! I did my first one for the cycle this morning and I'm sure it hurt more than usual maybe losing weight means there's less fat to stick it in or I'm getting a bit tired and sensitive with it now.

wolfEE, I woke up the mornng thinking about the surgery again. So you have the insert in no.1 boob and it sits behind the muscle and stretches it slowly as they fill it. When it's time for reconstruction does the implant for boob no.2 go behind or in front of the muscle as I'm thinking it's going to be a bit painful on boob no.2 if the muscle hasn't been stretched?  

Trisha, glad you've dodged the aches the time. I had an Epsom salt batch last night but to be fair I over did it a bit on the domestics yesterday whilst I had the energy!

Treehouse, hope you have a fun day with your family.

[Trisha69]

Really don't know how have avoided the aches this cycle. unless they still to come!x

[treehouse]

Ok Trish what's your secret? How did you avoid the aches? SERIOUSLY would love to know that.
Step kids arriving any minute. Really looking forward to having some quality time with the kids. I've been in my chemo bubble but now ready to rejoin the rest of the world. (Just slowly)
😀👍💪🏻💃

[WolfEE]

42 injection 😱 Wow. That's a lot I only had them on the 'T'part and only 5 each time so 15 in total and that was bad enough!!!!
It's true though we are all getting there now all heading towards our final chemos now - 🎉🔔👍
I'm also hoping I will only need 2 do the blood thinnng injections for another 5 or 6 weeks??

[Trisha69]

LOL! I've got one more then it's 42! whoop whoop! Not ached this time. Good job as run out of Epsom Salts! We r getting there ladies 🙂

[treehouse]

MJK just done my last injection 💉 Too
Also 42 of them!!!!!!!!!
Hope we don't need any after surgery.
💪🏻💃🎉👍

[Mai7]

Lol, WolfEE, I got the gist! 😂 Xx

[WolfEE]

Gosh just tried to re- read that last post very long and don't think I've worded very well. Hope it makes a bit of sense !!!!

[WolfEE]

Mai7, my oncologist said priority is getting rid of the cancer so same as you full lymph node clearance and mastectomy on cancer side which is my right. She said recovery will be easier having just the one side done especially because of the lymph nodes. Also I think reconstruction is easier and more ideal at the same time so having the other side done along with reconstruction of this side will help them look the same and will avoid having another tissue expander. I wanted both done at the same time so I wouldn't need another operation but once I realised I needed the radiotherapy and I'd need a second operation for the reconstruction anyway I didn't mind waiting. Although at first I struggled with waiting the year incase I ended up with a second cancer but she reassured me saying that I'd be having follow up appointments and be on the hormone blockers so unlikely.
So basically it was decided that I'll have the good side removed separately and not at the same time after it was discovered in my lymph nodes becauE that then confirmed radiotherapy and the need for second surgery (reconstruction) she felt recovery of the two reconstructions on both sides would be easier later on than now as the lymph nodes this time will add to some discomfort and will be healed b4 being operated both sides. !!!!!!
In the end I just said to her you know best and I'll trust that your suggesting what you feel is the best thing to do.

[Mai7]

MsyAngel, the Tamoxifen blocks the oestrogen receptors to prevent new tumours forming. It's prescribed for pre-menopausal women. Post menopausal women have aromatase inhibitors instead. My Oncologist said they will check my oestrogen levels before any drugs are decided to check where I am on the menopause journey!

WolfEE, do you think they would consider bilateral all in one go or do they prefer to phase it?  I have mastectomy and full  lymph node removal on left side so they may think that's enough surgery to cope with for now?

MJK, 42 injections! Is that the total number for the full duration of your treatment? 💉  I just got a sharps bin delivered today as the chemo nurse forgot to give it to me yesterday and I forgot to remind her - I was pleased to have remembered to ask at all with chemo brain! 😂

[misyangel]

Kala sorry to hear your news sending you a big hug

treehouse that is amazing from your work colleagues it really is lovely when people still are there through the long hall.

Jay thanks for info ref herceptin that makes me feel a lot better 

i am going to ask my oncologist weather I will be on tamoxifen as I am a little nervous about that myself I know they said I had to take something for 10 years but can't remember what it was

[Rosie65]

Kala sorry to hear your news, but there is a lot of interest and research into the BRCA genes at the moment. I am BRCA 1 and am taking part in a research project which Cancer Research are funding. I was quite pleased to find out as I've had more targeted treatment as a result.

Fortunately I havent passed the gene on to my daughter but my sister has passed it to her daughter. She is 27 and having preventative treatment. She has seen what I have been through with chemo and is pleased she can avoid that herself.

Im having bilateral mastectomies and oncologist advised delayed reconstruction in case I need rads as although no lymph node involvement shows on ultrasound they won't be sure until after op. I am keen to get both breasts removed as you don't need mammograms  any more so gets rid of that  "scanxiety"

My sister got a second primary lump within 6 months of chemo finishing and then another in the other breast 6 months after that, she is obvs BRCA 1 as well.

I'm hoping I have enough tissue for a tummy tuck to create my new boobs but am meeting surgeon next week so will find out more then.

[MJK]

Another milestone reached. Filgrastim complete all 42 of them and they have done the job.
💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉💉
😣
Hopefully now the lower back pain will go too. One day to go Treehouse...

[WolfEE]

Mai7, also having both reconstructed at the same time you can get a better match!! Trying 2 make one look like the existing is more difficult sometimes resulting in some minor surgery on the other side (reduction etc) and peace of mind is a massive benefit. At least you'll have some time if you have the year wait to make any final decissiins. Sometime I think the treatments we are going through makes us think irrational??!!! The surgeon said if I really don't like the tissue expander I can have it taken out at any time but having it put in will keep all types of reconstruction options open.

[Rosie65]

Thanks ladies for the fit note advice. I think I'll phone my boss first to discuss and then phone GP. My original letter from oncologist was for my original plan 4xEC and 4x paclitaxol due to finish 13 August. OMG if only!!!

But after genetic test came back positive it all changed. I'm not seeing the oncologist again until after surgery so guess it will have to be the GP.

Ive been fine working from home clearing my backlog but don't now have enough work for full time. My job involves visiting companies across London every week; an hours commute plus tubes etc and only a couple of days in the office. Mentally and physically there's no way I could it at the moment. I didn't enjoy it before all this so I'm kind of hoping I can talk my way into a more desk based job when I go back.

[Mai7]

Treehouse, aw, that's so sweet and lovely to know you are being thought of. X

WolfEE, that sounds like plan, I'm thinking of double mastectomy because my non-cancerous boob is full of fibroadenoma lumps which had an area of radial scar tissue removed 15 years ago by vacuum assisted mammotome so I feel like it's a time bomb. Radial scar tissue is considered high risk of turning cancerous.

Raitchr, I'll look into booking onto a course at Nottm City when all of my treatment is finished.

[treehouse]

Husband just came aback from work with a huge bouquet of lowers, card and cake from work colleagues (we work at the same place)
I burst into tears 😭. Can't believe even after 5 months people can be bothered to reach out and say they care.
Totally overwhelmed ❤️

[WolfEE]

Mai7, yes the stretcher thing goes in during the op before radiotherapy. They will be putting mine in during the same operation that I have mastectomy ad lymph nodes taken out. Radiotherapy afterwards

[Jay68]

Treehouse - Sorry to hear about the lower back pains -  I got them on my first and my final chemo - I'm sure its related to the injections - how many you got left to do?  Paracetamol will work as pain relief.

[Raitchr]

Kala, sorry to hear your gene results. I do believe it is positive as you get better aftercare with followup checks and annual Mri, so I hear from others on another forum I am on.

H

[Raitchr]

There is a lovely Maggie's at Nottm City hospital, that's where I go. I am booked on to the Moving forward sessions starting 1st Nov.

Heather

[Mai7]

Katie, yes it was me, I've found there is a Maggies in Nottingham so may look into it. Xx

[Mai7]

Kala, sorry to hear about your Braca2 diagnosis but thank goodness you are now empowered to make decisions - both you and your family. Big hugs to you all. Xx

WolfEE, it definitely sounds like there a genetic pattern in your family and not coincidence. There must be more genetic types and sub-types yet to be discovered/decoded.  Xx

Do you know if the stretcher implant can be inserted before radiotherapy? So you can have it at the time of your surgery but don't get it pumped up until radiotherapy has finished?

Treehouse,  Sorry to hear you are getting all achy.  I get lower backache on the Docetaxol and have it now. It's just the gift that keeps on giving with new surprises all the time.  I'll probably have an Epsom salt bath tonight. Xx

[katie11]

Big hugs kayla. Hope you are feeling OK about it all. Enjoy your ribs and milkshake xx

[MJK]

Big hugs Kala, sad to hear you're braca2 positive. At least they know in time to change the surgery.

I had surgery first and decided against immediate reconstruction. After surgery the surgeon said it was a good call as I need radiotherapy to the neck, chest and armpit. An implant would have failed. I guess it depends on the extent of radiotherapy needed, your surgeon should be able to advise you.

[WolfEE]

Kala, firstly enjoy that pasta day 9 is such a joyful day when things are improving. so sorry you've had confirmation of the braca gene. My genes are still inconclusive I have tested negative for braca (I knew this I was tested about 15 years ago) I am awaiting results for other types but I think I will come back negative they have suggested they check criteria for adding me in2 a rear disease database that may or may not at some point help identify something. It could all be down 2 bad luck but the history in my family is so strong with breast and ovarian cancer all at early age (mostly under age 40) and hasn't skipped any generations. Myself, my mum, my mums mum and sisters, then their mum before.
Regarding radiation. I've been told it is best waiting a year after radiation for reconstruction it is because of the risk of the skin not healing and also for a much better cosmetic result. The radiation could destort any reconstruction done prior. I will have mastectomy and lymph nodes removed of cancer side and they will for a tissue expander under the skin that after radiation is pumped up bit by bit to keep shape in chest wall and stretch skin in preparation for reconstruction. I don't know at this stage what kind of reconstruction I'll have but I will have all options discussed etc before the time comes. When I have recon a year later at this point I'll have the other breast removed and reconstructed in the same operation.

Treehouse, I suffered terrible lower back pain that I couldn't believe it was chemo related (I had also so far been lucky not experiencing bad aches throughout) however, after my last white blood cell injection the back and leg pain both disappeared as quick as it come I was amazed I was worried I was going 2 have moths of problems with a dodgy back so I guess it was chemo related but at times it was taking my breath if I'd been told it was broken at the time I wouldn't have been surprises.
I was taking lots of paracetamol and using ibeoohen gel and deep heat it helped for a short while. Xx

I'm a bit behind everyone getting on2 the courses I'm only just attending the look good feel better course next Thursday. While I'm there I will as about the moving on and see if I can get myself signed up.

It really must be a weird feeling on chemo day not setting off for the hospital a nice feeling though.

[treehouse]

Hi kala. Sending hugs.
That's taken a while to get your genetic results and I'm sure it's a shock at this late stage.
I am BRCA1 and with my mums history was kinda expecting it. I too am having bilateral mastectomy and ovary removal and feel really positive that I am doing everything I can to prevent it returning.
I have boys but my sister is waiting for the test.
I know it's a lot to take in. Personally I wanted bilateral mastectomy just because I'm paranoid so having positive genetic test meant it was not going to be a problem.
Sorry I have no advice about rads.
You are not alone in this x x x

[Kala]

Hi 👋Ladies. Day nine from last chemo and finally I'm eating a meal ( pasta nom nom). 

Yesterday was a sad day as the genetic team phoned me with my results, braca 2 so my future operation has now been totally changed to bilateral mastectomy and overies removed 😭

On the plus side it's all free and now my daughters will take the tests as they are at 50% risk of having the gene also as are my sisters. 

Still trying to come to terms with it all as you know guys , it's been tough enough dealing and coping with the chemo ! Thank goodness that part is now over 🌈

How amazing are we all to cope with all the side effects imaginable. Going to get out there tomorrow and stuff my face with barbecue spare ribs and down one pint of strawberry milkshake 🌟⭐️💫

I am seeing the surgeon next week but there are so many options I will listen to them first and decide which way is the best way forward for me as I'm supposed to have radiotherapy after my op which means reconstruction may have to wait. Anyone else in this wonderful group know how this all works with the ops and the radiation?

hope you all have a fab weekend and do absolutely everything you can possibly manage to do without too much pain. Massive hugs 😻😻

[treehouse]

Ok. Either the paracetamol has worn off or the pains are just late to the party. This is new. I always get shoulder pain but now I got throbbing lower back.
What's that about?

[katie11]

You ladies have been busy! I've just had 2nd part of moving forward course this morning. Felt it was much better than last week, exercise , holistic treatments, and about moving on from treatment and diagnosis. Also had a tour of the new maggis centre. Mai was it you who said your area didn't offer the course? Maggis do a similar course if you have one in your area? Xx