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November 2019 Chemo Starters

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Re: November 2019 Chemo Starters,

Morning ladies,

Sorry to hear about all your vein troubles. Mine were def more painful but hoping end of EC may help.

I really hope you get sorted Debs and KC, that is one extra pain/hassle you can do without!!!

And yay to you 2 last EC's, roll on the next part. 

 

I have had no real problem with pooping till now so I thought I would share my amusing day yesterday....

Basically day 4, no birth as yet and seriously spent all day trying to eat/drink anything that may help. Let's just say it was like giving birth....along with almost trying different birthing positions, sitting on the toilet, phoning my hubby in Asda, him telling me there was really nothing he could say or do whilst standing in an aisle looking at chicken....stuck on toilet whilst dog walker brings dog home, shouting down just to leave him in the hallway....thinking I might have the most embarrassing visit to A&E ever....

After many cups of liquorice tea I finally make it to toilet again in the evening, thinking 'this is it', imagining giving birth....hubby is out taking son to football, daughter is out at netball....I have phone next to me in bathroom, it rings, I only answer it because I think it's hubby.........

Hello I say (luckily, not Hello I am on the toilet)...Good evening Viv, It's Dr S (my onc). I could have died, I totally forgot he was ringing me to discuss my ECG....πŸ˜‚πŸ˜‚πŸ˜‚. So I was trying to have a normal, slightly chemo head fuzzy chat with my onc whilst almost giving birth on the toilet. He then asked me how I was doing, so I tried to explain that I was having major pooping problems, trying to hide the fact I was sitting on the toilet almost collapsing with the effort. Ha ha. I was trying not to laugh at the same time, it was very surreal but it did the trick as the humiliation finally made me give birth, and seriously it really was....Hubby thought I had lost the plot when he came home and found me wandering around the house, muttering to myself.....that was hell but I did it, I did it,.....

Today I am drinking prune juice....

Sorry for any graphics and the loss of any dignity that I had but thought it might amuse you....

Love and hugs ladies xx

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Re: November 2019 Chemo Starters,

Hi Lisa , I asked my onc the question re the frequency of pacliataxel and I think it's a regional variation , she said there were less side effects and it was tolerated better at 1 and 2 weekly they opt for weekly here in Hull . 

I have also asked for pyridoxine ( vit B12) as research shows it helps protect against peripheral neuropathy which she was fine prescribing for me , I have a friend who got irreversible neuropathy and really struggles with it and I dont want it 

Xx KC xx 

 

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Re: November 2019 Chemo Starters,

Well that's the last EC done today , they struggled getting blood from me today although veins looked ok they went AWOL when in , sooke to onc this morning and they have booked me in for a PICC line , nurse felt my veins would be ok but I find it so painful and PICC takes 2 weeks to organise so booked in before real trouble , my arms are really aching although onc said Pacliataxel was kinder on the veins I'm going for the PICC .

So next is Carbo / Taxel on the 28th just when I was getting used to the EC side effects cycle lol

Chris , hope you got ok today  

Best wishes to all xx KC xx

 

 

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Re: November 2019 Chemo Starters,

Same for me mini mad, plus I added in a glass of prune juice each day.

worked a treat and more natural. 

I was told stewed rhubarb helps too. 

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Re: November 2019 Chemo Starters,

Hi HelenofBrum.

 

re the constipation... i drank loads and i mean LOADS and also bought some sugar free liquorice... 3 pieces a day for 2 days and everything moved.. !!! 
worth a try if other meds give you stomach ache.

mini mad xx πŸ’–πŸ’–

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Re: November 2019 Chemo Starters,

Hi Debs

 

Could you ask for a PICC line for the rest of your treatments?

I know it is epirubicin that is the culprit, but I am not sure that docetaxol is much better in terms of vein damage?

 

It may be worth asking

 

Here's to hoping the get the stuff into you tomorrow XXX

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Re: November 2019 Chemo Starters,

Deb - what a pain and it’s so annoying that even blood samples don’t go our way.  I only have one good arm now so they recommended I had a picc line which I have to admit has been great for chemo.  It’s supposed to make it easier for blood samples too though last time I went there was nobody that could use a picc line and they had to take it from my hand anyway!!  Fingers crossed you will have no problems tomorrow 🀞 xx

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Re: November 2019 Chemo Starters,

Good luck KC and Chris 

 

just back from having my bloods done, they really struggled to find a vein, first arm (chemo arm) nothing, needle went in and no blood at all. 

Back to the arm they rejected last weekβ€” eventually she found a vein but could only draw enough to fill  the vials about a quarter of the way. It’s already bruised and swollen, hope they got enough to test and now I’m worried about the arms for tomorrow.  

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Re: November 2019 Chemo Starters,

Thanks both!

I seem to get alot of stomach pain with Senna...but better to take on first night than still have to take it 5 or 6 days later! To be fair, the pain may be caused by leaving things for such a long time!!

 

I will experiment this time with your strategy and see if it is a better experience.

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Re: November 2019 Chemo Starters,

Hi Helen! My constipation was HORRIBLE with my first round, but not the second. With the second one, I started drinking tons of water the day before chemo and kept it up during the days after. I also started taking Senokot-S(senna with colace)the day of chemo and took it for a couple of days following. I also tried to stay away from constipating foods. I was so relieved that it worked because it was so bad the first time I almost decided to stop chemo all together! Hope this helps!

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Re: November 2019 Chemo Starters,

Good luck KC and Chris for tomorrow.   

Helen, While I’m taking ondansetron I take x2 Sennakot at night and that keeps the constipation sorted xx

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Re: November 2019 Chemo Starters,

On another note... I don't want to be constipated this time round.... 

 

Please give me your anti constipation strategies xxxxx

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Re: November 2019 Chemo Starters,

Good luck tomorrow KC and Chris!! I am following you on Friday if they get me a slot!

Viv... DIEP is a reconstruction where they take the fat and blood supply from your stomach and make a breast or two. It is carried out by a microsurgeon, and is at least an eight hour operation and 4 month recuperation. It is good for people who can't tolerate silicone implants, and is a more natural finish.

Lisa... Sounds like my BCN is similar to yours, which is reassuring. 

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Re: November 2019 Chemo Starters,

Good luck for tomorrow Chris (chemo twin πŸ‘­) , hope you feel better after this round then your last 2. 

KC πŸ’•

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Re: November 2019 Chemo Starters,

Lisa - Cheeky is fine πŸ˜‚   Sounds like you’re making good progress.   It’s amazing how quickly the weeks go by.  Xx

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Re: November 2019 Chemo Starters,

Hi Cheekychops (I feel like I want to call you Cheeky for short πŸ˜‚),

Yes, my treatment plan is 4 x EC every 2 weeks, then 4 x paclitaxel every 2 weeks, then 3 weeks of radiotherapy. I will be having 4th EC this Thursday, so should finish chemo in March and have the radiotherapy in April. X

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Re: November 2019 Chemo Starters,

Thank you and hello Viv.  Good news stories are great and give you so much hope.   Doing this together will make us stronger and more positive.  Glad the ECG found all is good with your heart xx

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Re: November 2019 Chemo Starters,

Hi Lisa, thanks for the welcome.   Yes I was shocked when he said how many nodes there were and especially that so many were affected.   Do you have to have radiotherapy?  Xx

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Re: November 2019 Chemo Starters,

Your school children sound so lovely Debs ❀️❀️

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Re: November 2019 Chemo Starters,

Hello and welcome Cheekychops ❀️

I’m similar to you, ER and PR +, HER2-, 6.5cm tumour and lymph nodes affected, stage 3, grade 2.

You have a lot of lymph nodes! I had full lymph node clearance and they removed 9 in total (I keep wondering if they missed some), 2 affected one of which was higher up and 3.2cm tumour.

Sorry to hear you will have to go back for a mastectomy, that must have been hard to find out. I have had mastectomy and am still on the fence about reconstruction later on.

Take care,

Lisa xx

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Re: November 2019 Chemo Starters,

Welcome cheekychops,

Glad you decided to join in with our chats, they def keep me going along this bumpy ride. A friend of mine just got her 6 year clear and a pal she met on this forum all those years ago and who is also Her2 + sent her a present and a little painted pebble for me to keep in my pocket. It was really sweet and makes you realised the bonds you make when you go through such a traumatic experience... I really hope we can still check on each other through the years too..πŸ’•

Thanks for all your comments earlier, I guess I need to just get over my guilty thoughts.

On a plus, I just had my ecg and heart was still working fine. Didn't know Eribulin could cause irreversible heart damage (ass opposed to herceptin which is reversible).

Debs, love what you did with the school, what a great idea.

Ladies, who have had surgery, guess i have all that to look forward to...just hoping the shrinkage is enough that I can just get lumpectomy, that's the plan!

Xx

Ps Helen, what is diep?

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Re: November 2019 Chemo Starters,

Hi Viv,

I think most of us would have used private insurance / option had it been an option and I don’t think you should feel at all guilty about it. The way I see it is that you are saving the NHS some money, which can’t be a bad thing, and you are getting good care in the process which is definitely a good thing. Xx

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Re: November 2019 Chemo Starters,

Hi Helen,

I have a named BCN and shortly after diagnosis I spoke to her on the phone once and met her once. I have also met other BCNs when she wasn’t available. There has never been a BCN at any of my appointments with surgeon or oncologist unless for chaperone (i.e. where I’ve needed to undress); I assume this is policy.

As with you, every one I have had contact with has been really helpful and lovely, but I think they are just overstretched.

I think it’s worth persisting or saying something. They should definitely be replying if you contact them.

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Re: November 2019 Chemo Starters,

Thanks Helen, your message is so helpful.    I have to have a temporary reconstruction with implant as they’ll need to stretch my skin before radiotherapy.   For the permanent option, I think in my heart I know diep is the best option.  They won’t do that till about six months after radiotherapy so I have time to consider it all,    The long recovery time is daunting.  I’m lucky that my work have been amazing and I’m able to work from home as little or as much as I’m able.   Xx

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Re: November 2019 Chemo Starters,

Hi Debs

Loving the comments... I definitely want to go to a hospital where they can get me to grow my boob back!!! πŸ˜‚ Maybe one day, in the future.....

You have probably really helped them not to be too scared... As cancer is made out to be the boogy man!! 

 

❀️

 

 

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Re: November 2019 Chemo Starters,

Hi Cheekychops

Chemo is definitely worse than mastectomy. The silicone effect isn't quite Katie Price, as it is just silicone in skin. But mine matches my other for size and shape, and looks fine in a bra. It is a bit heavier, and sometimes falls a bit strangely if lying on my side. Losing your nipple is a bit sad... But not too terrible in the grand scheme of things. I will probably ask for DIEP once my youngest has finished her A levels... Partly as the major downside of silicone is that it is hard to check for recurrence. I didn't even think about it at the time as I didn't want to go flat. But in the long run the possibility of catching recurrence is more important to me than appearance... It is a hard decision to make. I think diep is the best long term compromise.. But it is major surgery, and I need a physical break beforehand. I wasn't  given it as an initial option as they don't like to do it prior to Chemo. However if I was in your position I would be tempted to do it.. It is common practice in US. It depends on your work/sick leave/money situation, as it is a further 4 months off

We need a cancer crystal ball to help you decide!!! 

Xxxxxx

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Re: November 2019 Chemo Starters,

Well if I’m lucky I do poos, I certainly wee pretty much constantly and talk !! Don’t think anyone would say I’m shy lol 

 

Other than  when it went on the school app and newsletter, cancer wasn’t mentioned other than to answer questions. Obviously the older ones can read so they asked questions but mostly to the head teacher. Otherwise it was left to oarents to say as much as they felt necessary.

Some comments. . 

I was asked if it was catching... and when I said no, she said so I can hug you and did. 

Jake told me his gran had had breast cancer and she lost her boob but it grew back, (I guess a reconstruction lol )

Elias told me he was sorry to hear about my poorly. 

Tayla was hilarious. I went into the class to fetch a child to work with, as I walked in she called across the room β€œSo you got cancer miss.” Yes I said, 

she patted the empty chair next to her,and then said snuggling upto me

”So.... what we gonna do about it. β€œ

I said they would probably operate she said and then you’ll be ok so that’s good. 

 

Thimas told me, cancer kills you, I assured hi I was going no where and not every cancer kills. He said BUT ITS POWERFUL  Me: so they’ll give me powerful medicine to make it go away.

 

 Mostly  i had questions about losing my hair and if it would grow back. I honestly think that because I look so well,  any worries they may have had, they’ve had the reassurance that I look ok. Think that goes for adults too lol 

 

 

 

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Re: November 2019 Chemo Starters,

Hi Helen

My plastic surgeon is happy to reduce my good boob slightly if I want so I probably will.  I just need to decide if I want to keep an implant after radiotherapy or go for a tummy tuck but I know that is a bigger op,    How do you find the silicone implant?   I think the no clear margins was a low point for me as I had got my head around the scars and the look of my boob after the lumpectomy so the thought of additional surgeries was hard to come to terms with,    Now I’m just trying to do a stage at a time and not dwell too much on how far I have to go.  Most people say chemo is the worst so I’m halfway through and heading towards the end of that which is good progress,  xx

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Re: November 2019 Chemo Starters,

Dear Cheekychops

Welcome and loving the name! Sounds like you have had a really bumpy initial ride, damn those pesky margins...at least a mastectomy will give piece of mind. My mastectomy (and silicone implant) is behaving itself so far, but it is always disappointing not to have a lumpectomy...especially as reconstruction is an ongoing process. I don't know what your boobs are like (getting a bit personal- apologies!)...but I had my good breast reduced and uplifted...and I have to admit it looks much better than it did before. Am loving having smaller boobs...went from an F to a D. 

 

Debs..what a great lesson your kids are getting....are you getting any weird questions when you go in? I suppose you have to be careful about how cancer is framed as you don't want to terrify them!

I remember when my eldest started reception, the fabulous  teacher had me come in for two lessons...one with my youngest, fresh new born baby and one with my dog (I live in an area of Birmingham where very few people have dogs for religious/cultural reasons). Both lessons I was asked...does it do poos, does it do wees, can it talk πŸ˜‚

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Re: November 2019 Chemo Starters,

That’s amazing Deb and must make you feel so supported and with the added bonus of raising so much money for charity  x 

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Re: November 2019 Chemo Starters,

My diagnosis was very public. I work in a school (have been there over 24 years) 

i was diagnosed just before the October Breast cancer awareness campaign, so quickly became the face (or boob) of the schools fundraising lol with my permission it was put on the newsletter and then we got behind the fundraising with a passion. 

We raised  just over Β£1400 in a week, selling cakes, raffling a signed local team football shirt WBA. plus some of my knitted teddies and other donations. 

 

School hall was decorated in bunting decorated by the year 1 children I work with and everybody wore pink or red for the day.  Including these two lovely girls showing their support for me lol IMG_4742.JPG.

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Re: November 2019 Chemo Starters,

Hi Debknits

Thanks for the welcome.   I hope your 1st cycle of docetaxol goes ok.  I found FEC tough at times but not as bad as I feared.  Xx

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Re: November 2019 Chemo Starters,

Thanks KC57 for the warm welcome.   I have kept my diagnosis very low key as I’m very private so it’s nice to share with people who have a full understanding of what I’m going through.    I did visit forums at the beginning of my diagnosis but felt at the time there were too many bad stories and not enough good but I guess the only way that will change is if we share our experiences good and bad,   

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Re: November 2019 Chemo Starters,

Glad you decided to join us xxx. 

im due my first docetaxel on Wednesday !! The FEC part wasn’t too bad for me, so hoping I sail through this one with minimal annoying side effects 🀞🀞🀞

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Re: November 2019 Chemo Starters,

Welcome CherkyChops and glad you picked up the courage to join the forum however also sorry you have found  yourself in this situation   , I joined fairly late as I started chemo end of November and like you I watched from a distance first but have found it such a source of valuable information ,support and inspiration . I think for me it would have been a very lonely journey without my BC buddies , I was very scared and am not good at sharing my thoughts at home , this for me has been a very safe place .

Love and hugs KC xxxxx 

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Re: November 2019 Chemo Starters,

Hi 
I have been hovering around and finally plucked up courage to join your thread.    I was diagnosed at the end of July but had issues starting treatment due to more required investigations.    I am ER and PR+ and HER2-.  Stage and grade 3.  I had a 4cm tumour initially but then an mri showed a further suspect area.  I had a lumpectomy in October and it turned out that the tumour was 7 cm and 15 nodes were also affected.  Another 10 nodes further away from the breast were removed but were clear so there was a bit of positive news.   Sadly they didn’t get clear margins and my surgeon found other areas that didn’t look right so recommended I start chemo and then will have a mastectomy and temporary reconstruction before radiotherapy and later on a permanent reconstruction (implant or diep)  It’s all very overwhelming but I’m trying to break it into stages,   I have now had x3 cycles of FEC and will move on to the 1st of x3 cycles of Docetaxol on 17th January.  I am cold capping and though I’m shedding hair and it’s thinner I still have a full head of hair and stubbly bits where it is regrowing so it’s been worthwhile for me.    I look forward to chatting to you all,  

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Re: November 2019 Chemo Starters,

Well  said KC, No brainier really, you /we all use every resource at our disposal to give ourselves the best chance of fighting this b@stard disease. 

 

Keep on fighting any way way you can Viv, I know I will. Xx 

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Re: November 2019 Chemo Starters,

Hi Viv I dont think anyone would disagree with your decision, we all are doing what we can to win our fights and I would have made the same decision as you ten times over 😊 I'm afraid morals go out the window at times like this ❀

Love KC xxx 

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Re: November 2019 Chemo Starters,

Hi Viv

 

We don't think badly of you ❀️❀️.. And it is a compensation for having an off shore husband!!! Don't blame you for wanting things done quickly xxxx

 

I get the feeling that they are the same surgeons and oncs, but they try a bit harder to give you time and information if you are private.

 

So maybe it's a bit of both...strain of the system plus a poor email responder. To be fair my Onc and surgeon are consistent. Luckily I have groups like this, good websites and research papers so I have tended to find the answers! 

 

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Re: November 2019 Chemo Starters,

Hi guys,

I am really lucky to have gone through private route. Hubby works offshore and they all get insurance through their oil companies (slso having lived in the rainforest for 3 years, in an area devastated by oil drilling, it leaves a bad taste).

I feel kind of guilty about it, but now I'm fighting for my survival I'll take it even if it doesn't sit well with me.

So main benefits is I see my onc or talk to him between each cycle. There are 3 onc nurses who work at the hospital and I see them each time so psychologically it makes a big difference. Have a chat, it's personal and I can phone them at anytime.

The treatment is the same, what is not is the little details in care.

My surgeon and oncologist both did insist that if hubby lost job etc I would still continue with them on NHS and that none of the treatment side would change.

It doesn't seem right that care is not equal for everyone, we should all be getting the same level.of care. I do know that in Scotland anyone with cancer will be getting a designated contact throughout their treatment, a bit like I get but with the NHS. I think it would make a big difference mentally.

What is important is that your voice is always heard wherever you live, appreciate that some places are very overrun and overworked but we must always persist and get the best that we deserve.. To be fair I know a few ladies who have been treated for BC at the local hospital and they had great treatment, perhaps smaller catchment area, smaller unit?

Please don't think badly about me going against my morals, it's actually the 1st time I've used the insurance in 17 years!! Good timing...

Love and hugs xx

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Re: November 2019 Chemo Starters,

Before I started the chemo i saw the same consultant each time and was given a designated BCN but during  chemo I’ve seen a different consultant member of the oncology team and a different CSW each time. 

 

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Re: November 2019 Chemo Starters,

Hi Helen I was given a named nurse and have met her a couple of times but was told whilst on chemo they take a back seat , I'm neoadjuvent, I do  have a named chemo nurse, however when I see onc it's a different nurse each time so a bit like you Helen it's not consistent  , though I havent had much reason to contact them as not had surgery yet , it does sound like overstretched NHS but as an ex nurse I still bad form not to reply to calls and e mails  

Xx KC Xx 

 

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Re: November 2019 Chemo Starters,

On a different subject...do you all have a specific breast cancer nurse?

 

I suppose some of you may not have had much contact yet, if you are on neoadjuvent chemo and haven't met your surgeon much. 

I know some people who have had a really good experience with their nurse. In contrast mine is never in my consultations, and didn't see me before or after my op. I have had about 6 different ones rather than my named nurse (who were all lovely...just inconsistent).

 

In addition I am having difficulty getting mine to respond to my emails or calls...but don't want to complain as that is very undermining...just wondered if it was the norm?

 

If it is just a symptom of the NHS being overstretched, then that is fine.....

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Re: November 2019 Chemo Starters,

Happy Birthday Lisa! Perhaps you should celebrate it again on 5th July, in 6 months time, like the Queen? Good idea to ask for a PICC if your veins are deteriorating, though not sure how easy it will be for them to get a PICC in once that has happened..worth an ask. You can still also ask for a central or Hickman line ...I will tell you how I get on with my request! Well done on the weight loss Chris...whilst still rapid, it is no longer alarming! I lost 2 stone before I found my thickening...I am sure the weight loss helped me find it earlier...as my boobs had deflated! Amazing how a cancer diagnosis shakes us up and gets us to reassess our lives; my illness has made me more sociable and less work focussed. It will be interesting to see if this is a gift that cancer has given me that persists after treatment, I really hope so. I totally agree with the cycle...though mine is one week trippy/uneasy with digestive problems, one week mouth/taste stripped but OK mentally and one week bouncy/fine. Let's see how docetaxol hits with Debs as the first guinea pig .....thinking about you on Wed Debs.
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Re: November 2019 Chemo Starters,

Hi KC, 

Think I have similar to you aswell. First week 'wooshy and woozy', no taste, 2nd week sore mouth, 3rd week really sore neck and tonsils too! Wierd..

I was told by nurse that it's the Erubicim that makes your veins sore so hopefully that should be done with. Mine are def sore and felt it this time with my last EC!!

Xx

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Re: November 2019 Chemo Starters,

Happy Birthday Lisa 🌹πŸ₯€πŸŒΊπŸŒ»πŸŒΌπŸŒ·βš˜

Glad you managed to get out and have some lunch πŸ’•.

Yes next year will hopefully be a different story for all of us and spa day will be a treat to look forward to.

 

Feta cheese is my go to, ha ha

Yes KC, reckon dose will be lower if you have it weekly so hopefully sides will be too.

Chris, I defo need to lose weight. I put on loads last year with pre menopause and now it's proving hard to shift.

I got my hubby a cook book for Christmas   (well for me really) wirh loads of roasting one pot dishes so am going to try and tantalise my taste buds.

Someone gave me a cancer healthy cook book but seriously the recipes are way too complicated that I cannot be bothered to try any !!

 

Xxx

 

 

 

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Re: November 2019 Chemo Starters,

Happy birthday Lisa, as already said, not the ideal time to be celebrating but hope you’ve been spoiled all the more lol 

 

 

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Re: November 2019 Chemo Starters,

Hi Lisa 

 

Happy birthday hun, I know that it will not probably be as good as other birthdays with what your going through, but just think next year you can go all out Heart

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Re: November 2019 Chemo Starters,

Happy Birthday lisa !!!,πŸŽ‚πŸ₯‚βš˜πŸŽ mine is the 17th so hoping my taste back by then 

Love KC xxxx 

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Re: November 2019 Chemo Starters,

Cheese is my weakness and some lovely strong cheddar on biscuits is my go to when I’m feeling nauseous (most of the day!).

 

KC, I start paclitaxel on 23rd Jan (I have one more EC before then), but mine is once every 2 weeks. I believe they reduce the dose if it’s given weekly so with luck your side effects won’t be any worse, but it’s definitely one to ask your oncologist. Let me know what they say, as I’m interested in how they decide weekly or every 2/3 weeks - I wonder if it just depends where you are...

 

It’s my birthday today. I’ve reached half a century! I managed to get out for a walk and lunch and have been spoilt with presents - a spa day to look forward to and tickets to the Chelsea flower show 🌼🌳🌹🌿🌺🌸 

 

Helen, enjoy your chemo free time 😊 xx