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Pain in Kidneys

32 REPLIES 32
Member

Re: Pain in Kidneys

Hi Pink

So nice to hear from you again ....and well done for finishing the chemo; I know you have struggled with the Tax especially. I hope your feet feel better soon and no long lasting nerve damage......

 

I must admit I felt exactly the same as you -.what do we do now!

It felt odd at day 11 post last chemo...feeling better without dreading the next session in a few days......it was great to feel better,. Hopefully you will start to feel better as the time from your last chemo gets further away

 

I have the Herceptin injection at the hospital.....they offered to have the district nurse come to my home but I didn't fancy waiting in for them to come....... Regarding the Herceptin.....I don't want to tempt fate but I have not had any major side effects......little bit of joint stiffness.....but not major.

 

I can imagine you are anxious about your op.......it’s only natural......but just keep in your head the chemo did its job and now you are just clearing all margins....and the rads will be the last hurdle.

 

I had hot flushes on chemo too...... I have been taking tamoxifen for 8 days now.......have some hot flushes....not sure if symptoms increase the longer we take it?

 

I have had my 8th radiotherapy today......... only 7 more sessions to go. I moisturise twice daily with the aqueous cream on my arm pit and up to collar bone but importantly don't forget under the breast too...apparently area can easily breakdown...........I have had some tenderness in the breast ....which my oncologist said is normal....he said you can also experience swelling and pain too which are all normal.

If the swelling is significant they remeasure to ensure rads hitting the right area....but nothing to worry about.

Each session takes about 5 minutes as they line up tattoos and the machine whirls around you....

 

My hair is growing longer now but not thickened up yet...and my eye brows are coming through.....but alas no eye lashes yet....although I am sure I can feel some coming through....so still wearing the falsies

 

I haven't ventured out for a meal yet....although I had a sandwich from Greggs lol....so feeling braver.

I have actually gone completely dairy free now.....I read the book by Dr Jane Plant - "Beat Cancer".......she has survived over 30 years from breast cancer despite 5 recurrences...... she and lots of other researchers emphasise how carcinogenic dairy products are for humans.........and the oestrogen found in milk is something we are trying to keep clear of.

It’s actually not been too difficult to change my diet....Tesco have a good dairy free range of milk, cheese, yoghurt, marg, etc. etc....... going to make some other changes too like adding the foods she recommends........ All worth a try. My family like the taste of the dairy free foods so they are also joining me on it....

 

I miss my son but its accepting they have their lives........ We skype so at least I get to see him.

Ohhhhh I bet you will miss your daughter too....and her 21st.....I feel for you x Will you be able to skype with her or Facebook while she is away?

 

I know what you mean about other people doings things for you....it’s never the same as we would do things...... I heard the weather is not great for the weekend......I .will keep my fingers crossed that it misses you x

 

I would love to swap emails ...its lovely having someone to talk to who is going through the same journey...and despite our supportive families ...they do not know how it feels.

I will send you my email address via private message on the top of this page.

People must think our messages on here are odd and nothing to do with pain in the kidneys...

 

Hope you have a good weekend.......and the weather holds.

Take care......hopefully your feet improve

Speak soon ..........don't forget to check private message for my email address

Donna x

 

Member

Re: Pain in Kidneys

Hi Donna,

 

Wow I feel like I’ve wrote this email so many times that I can’t remember what I’ve told you and what I haven’t now!  Its doesn’t help my chemo brain!!

 

Yeah!!  Finished Chemo!! I never thought I would get to this point in April it seemed like so far away, now I’ve finished.   I felt elated and terrified all at the same time when I walked out of the hospital; I think I was expecting someone to say hey, sorry got it wrong you need another ten lots before your finished!!  Then I got panicky thinking what I do now!!  Even though I know what’s next you seem to live your life in a three week cycle then it’s finished!!  Did you feel the same? Have you got used to it yet?

 

Thanks for the tip regarding the soap and deodorant, I will send my husband out on a mission to get some in ready, and I will have a look on EBay for the pillows.

 

I have been told that I won’t be starting my Rads till at least mid October!! Which seems such a long time off, and that I won’t be given the tamoxifen until I’ve had my second opp and had the results.  For some reason I am getting myself all worked up about my operation results, I’m scared that I have gone through all this so far and what if it’s not worked??

 

I have also started with the hot flushes last week, I don’t know if they are a side effect from the TAX or it’s the start of the menopause??  Did you have hot flushes as a side effect?

How are you getting on with your Rads? How much longer do you have to go?  How many weeks do you have to attend?  Any side effects with it?  Sorry so many questions!!

 

Also have you had your heceptin injection yet without your TAX? If so how do you have it? Do you have to go to the hospital or do they come to your house?  I have been told that they will come to my house, but I have not heard anything yet?  And again the inevitable question!!  Any side effects for the Heceptin on its own??  And how are you getting on with your taxoxifen?

So many questions, sorry to bomb bard you with so many questions J

 

How’s your hair coming on? Any sign of eyelashes yet?  My hair has defiantly started to come through but no sign of eyelashes or eye brows yet!!

 

I’ve been put on pregabalin for my feet, I have been told that I need to take these tablets for at least three months after the chemo has finished, because they are worried about permanent nerve damage in my feet.  I am still struggling with the last lot of side effects and my feet are terrible, some days I can hardly walk!!

 

Anyway enough moaning, how are you coping now your son has gone back?  Have you been out and about?  Can I ask have you been brave enough to go out for a meal yet?

 

My daughter flies out in a week, we are having a very small get together this Saturday, to say farewell and to celebrate her 21st early (she will be 21 in September)  everybody is mucking in because I am not up to doing the usual celebrations that I would normally do, but hopefully it will turn out ok, although I have just heard on the weather that a hurricane is on its way!!  Typical!!  Will let you know how it goes?

 

Do you have plans for the weekend?  I was wondering if you would like to swap emails, instead of using the forum? It’s ok if not, I’m happy to keep posting, it’s just good to be able to talk to someone else who is going through the same thing?

 

Speak soon, take care

 

Pink Tulip xx

 

Ps) I hope you get this one J

 

Member

Re: Pain in Kidneys

Hi Pink

this one has appeared on the site......I had the same problem a few weeks back if you recall?

Hope you are well

catch up soon

Donna x

Member

Re: Pain in Kidneys

Hi pink tulip
Sorry to read that you are having problems posting, can you please email moderator@breastcancercare.org.uk and we can try and sort it out for you

Best wishes
Lucy BCC
Member

Re: Pain in Kidneys

Hi Donna,

 

This is just a check I have sent you a few replies but they are not showing up on the forum? so I don't know if you are getting them or not??

 

I have no idea whats going on??

 

If you get this I will reply properly again to your last email??

 

Speak soon

 

Pinktulip xx

Member

Re: Pain in Kidneys

Hi Pink

so sorry to hear you are struggling with the Tax..........only one to go. I found the Tax hard and I am so glad it has finished. I decided to keep same strength rather than reduce dose........we haven't gone through all of this to let the last one beat you x

I had my first radiotherapy today......took about 5 minutes with setting up etc........you really don't feel a thing. My hospital is only a 5 minute drive from where I live......it will be a long day for you going daily 

 

I was told to use simple soap on the breast, gentle shower - no soaking in a bath, aqueous cream to moisturise daily....and prior to starting the radiotherapy.......cotton bra /crop top...special deodorant with 0% aluminium .....brought from boots called Bionsen (on shelf with other deodorants) pharmacist knew it was for use with radiotherapy

 

I know it is scary for your second op but at least it will be over

 

I'm dreading the menopause....start tamoxifen this Thursday....I have bought 2 chillows from ebay......its a pillow that stays cool to help with hot flushes......My oncologist gave me my first script at my last appointment.....I then ask my GP for repeat scripts

 

My hair came through after 1st Tax....so yours is probably too........mine looks like a half inch haze at the moment ....still no eyelashes...although eyebrows now visible

 

I hope you are feeling better now and I have my fingers crossed that your last Tax treats you well......... just think though its the last one :-) ........that will get you through the rough tie....just count down the days

 

I hope all your family are well....keep strong and take care xx Donna

 

 

Member

Re: Pain in Kidneys

Hi Donna,

 

Sorry not replied sooner, i have not been coping to well with this last lot!!

Had my second lot of TAX it hasn't treated me any better than the first lot, totally out of the game completly for a whole week!! 

Feeling better now apart from my feet and hands! My feet are so painfull I can hardly walk, even with the extra strong painkilers that the consultant prescriped for me! and my hands are swollen, peeling and so so sore!!  But hey last one next Friday Smiley Happy

My consultant appointment went well, I asked about my feet and was given the option of reduce chemo dose or strong painkiller and put up with it.  I went for the strong pain killers.  They don't want to see me until a follow up in six months time, so thats good.  They spoke about radiotherpy mentioned about 5-6 weeks, but I m waiting for an appointment with the radioligist to come through, so thanks for the info at least I know what to expect.

I have also had a follow up with my surgern, my 2nd opp date is 2nd september, which freaked me a litlle being so soon after my last chemo but they said it would be fine!! so things are starting to move forward which is terrifing in its self!!

Yes sorry I remember now, you are HER2 positive like me, they spoke to me about starting the tablet straight after chemo has finished.  I don't know about you but they said about tomoxifin for two years then if i have started the menophase they will change it to another for three year to help my along with it.

I don't no if going through chemo isn't enough, now I might have to go through the menophase!! not that I mind so much so long as I don't have a real rough one like my mother had!!

Sorry your sad for your son leaving, its heart breaking when they go away again, hope your feeling better now?  Congrats on your other sons results, well done Smiley Happy  Did you go and celebrate?

I know what you mean about it being stuck in our head it fightens me to even think about venturing in public without worrying!!

My daughter is doing a year abroad at Uni in Canada and leaves in a few weeks.  I'm not sure how I'm going to deal with that one!!

 

Have you had your first Rads yet? Will you be going on your own everyday? Its going to be really taxing every day, it is a good hours trip there and an hour back to the hospital i'm being treated at.  Is your hospital near to you?

Have you strated your tomoxifin? If so how did you get it/start it? and are you having any side effects that you know of?

 

Hope your starting to be able to enjoy the summer now that you have finished chemo? and hope you are well?

Take care

 

PinkTulip xxx

 

Ps) My husband and daughter think my hair might be starting to grow back!! I'm not so sure cos I still got another TAX to go, and don't want to get to excited!!

 

Member

Re: Pain in Kidneys

Hi Pink

just an add on to last message.......

Had radiotherapy planning today....took approx 40 minutes

 

Nothing to worry about........wear trousers so can keep on as strip to the waist.

 

1. go in have a chat about what will happen

2.lay on the scanner bed...they put cushions under legs and next to bum.to stop you sliding down......your arms are above your head in stirrups to support the weight due to staying in same position for 5 minutes...........actually very comfy

3. they get you to lay straight and still....then put dots on your mid chest...and each side of your body ... which they aline you with each time you go........they use marker pens but ask permission to use permanent dots to avoid them being rubbed off .....you have to consent to having this ...literally like a freckle......

4. then you just you lay still as the machine just hums and does its thing...they leave the room at this pont...but you can speak to them if you need to

5. All finished....given next appointments

Hopefully takes away some of your anxiety xxx Donna

Member

Re: Pain in Kidneys

Hi Pink

I hope you are well.....I know what you mean about the low mood .....I have struggled since my last Tax.....only felt normal on day 12........... I know what you mean about dreading the next session......just start to feel ok and have another course.....

 

My veins became more difficult.......but eventually sited the catheter in my wrist...didn't care where it was as long as it worked lol

 

Tamoxifen is a tablet I have to take for 5 years because my cancer is responsive to oestrogen.which makes it grow........so the Tamoxifen blocks it by stopping the ovaies from working and oestrogen produced elsewhere in the body

....

Radiotherapy is prescribed for 3 weeks for me...monday to friday .......the ladies I spoke to say side effects are minimal....tiredness and possible sunburn feeling to the breast....(nothing like the chemo) They said you do not feel a thing as you have the radiotherapy...just like any x-ray

 

Today has been a happy and sad day for me..........sad because I had to say goodbye to my son today for another year.........but happy as my youngest son had his degree results today and passed with flying colours....

I hope you are enjoying the time with your daughter....its hard not being able to enjoy the sunshine like usual............

How did your consultant apointment go?

Not long now until you have finsihed......and you can enjoy that meal out without worrying.........mind I think it will be in our minds for somethime.......and you can endure the champagne........bubbles and all

Keep positive ....... take care and fingers crossed for your next session

Donna xx

Member

Re: Pain in Kidneys

 

Hi Donna,

 

You can say that again, time fly’s when you don't want it to and it doesn’t when you do want it to!!

Yes it's the little things that seem to matter now. I'm looking forward to being able to go out in public without having to worry about catching anything, or even going out for lunch would be a lovely thought!!

 

Yes I agree things to taste horrid but when I spoke to my nurse, she said that I had got thrush and prescribed antibiotics, it did do the trick! Maybe worth asking? It might help?



I'm due for bloods and a follow up with consultant tomorrow, then 5th on Friday.  I just try and take each day at a time, my mood is low this week, I think it's because I know I got to go for my next one and I felt so bad after my last one!! And they struggle with finding my veins! But hey only two more to go now!!



I have an appointment with my surgical consultant next week to discuss a plan for my second opp. So will keep you updated!!



Tamoxifen?? Sorry do you mean post TAX??  Do you know what side effects radiotherapy has? I've been told it’s not half as bad as chemo??  How long do you have to have radiotherapy for?? is it every day? 



Wow red head to baby blond!!  I have no idea what colour mine will come back as!! It’s defiantly got a clean slate to start from as I am almost completely bald now! So much for the cold cap!!



Enjoy the rest of the time with your son, and yes I think we need a bottle of champers once this is all finished!! Even though I not keen on it Smiley Happy



Hang on in there.....your on the home straight

 

Take care

Member

Re: Pain in Kidneys

Hi Pink

hope you had a lovely time away x

Sorry to hear about your hands i know how it feels....has eased with each Tax....so fingers crossed yours will

I have kept my finger nails painted in quite dak lilac nail varnish to protect and avoid discolouration......worked so far...

When I told the chemo nurse about runny eyes....she said they are actually dry...and over compensate....so I purchased eye drops....which you can get prescribed too....may help? I find my eyelids get wet and sore......which inflammes the skin..........the list seems relentless...........

I am struggling with taste on this last course....everything tastes disgusting and I am eating rubbish to just eat and take away the horible taste.......hopefully it will wear off within the next 2 weeks.....

 

I start radiotherapy 4 weeks post chemo.......and Tamoxifen.......not looking forward to that :-( and its side effects....

 

Hows it all going for you? Do you have your plan yet...or will oncologist discuss on the 10th..........not long now until you are finished too......you have done so well .......... especially as you had pain etc to contend with.....We both deserve a big pat on the back............ the journey has been scary and tough but we waded through.......

Its funny but I keep checking my hair to see if its miraculouly grown more overnight............its all baby blonde at the moment....usually a red head so aiting to see what comes through............I cannot wait to put on eye mascara again........ohhhhhh the little things......

Have loved seeing my son.....hes off back on the 19th.......time flie when you dont want it to.

Catch up soon........take care........ xxx

 

 

 

Member

Re: Pain in Kidneys

Hi Donna,

 

Sorry not replied sooner we managed to get away in the caravan for a week, which was lovely.

 

My hands are shedding to, in between all my fingers and the palms of my hands and it stings like anything and my nails are all chipping and coming away to!!

 

I had to get some oral anti biotic because I ended up getting internal thrush!  Which I didn’t even think was possible, but hey on this thing anything is possible. It has cleared up now though, till next time? 

 

Yep my eye lashes have started to come off to and my eyes are constantly running and I seem to be putting weight on when I am not even really eating much!! So it’s not a pretty sight and it’s not much fun!!

 

How did your last session go? How are you feeling now?  Well done you have finished, bet you’re so happy? You have done really really well.

 

What’s next for you now? Do you have to have radiotherapy?  If so when do you start that?

 

My next one is this Friday on the 11th, I have got an appointment with my oncologist on Thursday as well.

How is your son? Bet you’re so glad to have him home and enjoying all the catching together?  How long is he home for?

 

Hope your managing this last one ok?  Just think no more chemo (apart from the herceptin)

 

Speak soon

 

Take care, so pleased for you

 

Pink tulip xx

 

 

 

Member

Re: Pain in Kidneys

Hi Pink

ohhhh sorry to hear you are struggling........its taking me about 10 days to recover from each session.

 

My face has been so sore with swollen eye lids and red face which cracked. I assumed it was sun burn as I put the washing out.......however; having read on here it may be a side effect ofthe Tax.....if you expereince it get some calamine aqueous cream from the pharmacy...works a treat.....although my face is like a lizard with sooo many shedding scales (skin) :-(

I too had the bleeding........not to worry about its because the lining of our whole tract is inflammed....... ask GP for some anusol with HC ( suppositories..)...or can buy it over the counter...

My mouth was ulcerated so GP prescribed gelclaire......excellent - takes away the pain and the swelling...tastes a bit yukky but sooooo worth it.

Heart scan went well...and saw consultant today to discuss radiotherapy....start at end of July and commence tamoxifen

I know what you mean about the painful joints .......I haven't (touch wood) had anything as bad as you have....... I hope it is not as bad for you on the next course.

I have had sore finger tips....makes it difficult to open and pick things up....strange how these drugs effect us!

If i had a selfie of myself right now........would laugh your socks off......piece of cotton wool stuck to my eye lid because its weeping.....skin all flaky.......wig skewiff......eye lashes on sore eye coming off lol....... will sort myself out before hubbie gets home lol

 

My last session is on the 3rd July....when is your next one?

 

Yes......My son is home tomorrow....so excited......... my daughter has been great cleaning nets etc...so used to spring cleaning myself........... done bits but sooooo exhausted

 

I bet your daughter was worried about you..........its a scary journey for them too....no one can tellus how it will affect us exactly........shows she loves her mum............. I try to hide my temperature at times from my brood.....when its up a bit to see if it will settle....but i know they all worry so have to trot off to the hospital..........

I hope you feel better soon........... and can enjoy the weekend.......just avoid the sun lol .........

Take care ........ Donna xxxx

Member

Re: Pain in Kidneys

Hi Donna,

 

Sorry not replied sooner, my last session has really given my a right kicking, starting to feel a little more human now!! Thank goodness.

 

I was in so much pain at the begining of the week with aching etc that my daughter rang the helpline becasue she was that worried, but fortunalty i'm  feeling better today.

 

I know what you mean about mouth and bottom, I've started bleeding as well sometimes!! I've never experienced pain in my joints like it!!  i don't fancy the thought of another two to go!!

 

How did the heart scan go?  Hope all goes well today with oncologist.  Only one to go your doing so well Smiley Happy

 

Your son's home tomorrow?? bet your so excited, it will help you take your mind off everything else as well.  

 

Hope your still feeling good, and have a great weekend with your family.

Whens your last one?

Let me know how you get on with consultant?

 

Take care, speak soon

 

Pinktulip xxx

 

Member

Re: Pain in Kidneys

Hi Pink

I hope you are well...............

What a way to spend your birthday...........

I know what you mean about veins...think they have had enough xx

 

I went in the garden for about 10 minutes on Friday.......and my whole face went red and the skin has peeled on my cheeks..........so staying inside this weekend lol.......... i look like a tomato

 

I'm alot better now........the Tax seems to affect my mouth and the lining from mouth to my bottom making it painful to poo (sorry if too much info  lol)..... feel ok now day 11...........only one to go

 

I have heart scan on Tuesday and see oncologist on Friday to discuss radiotherapy

 

Oh...Nystatin is for a fungal infection.....(.if mouth is swollen and white areas on tongue)

 

My son is home on Saturday :-) .........

Hope you continue to feel well .........only 2 to go xxxx

Take care

Donna xxx

Member

Re: Pain in Kidneys

Hi Donna,

 

Not sure why your last post didn't show on screen?

You don't seem to be having much look with the TAX?  Hope you are ok and feeling better now?  Do you know what might be causing it?  Sorry what is nystatin?

 

I went for me first TAX and Herceptin yesterday, long day had to wait six hours after treatment for side effects.  Not best day to spend your birthday but the staff were lovely Smiley Happy

 

So far so good but waiting for it to kick in as you do!! My veins in my arms have pretty much given up and they are struggling to find any veins left to give treatment and get blood Smiley Sad

 

Hope you are making the most of the nice weather? has you son arrived home yet?

 

Speak soon

 

Pinktulip x

 

Member

Re: Pain in Kidneys

Hi Pink

hope you are well xx

I had replied to your post....but hasn't displayed?????

Had my Tax last week....usully pattern had temp on the Sunday of 39oc so had to go in for blood cultures. Thankfully all OK.........mouth soreish so have nystatin.

I still have the red face and chin....followedby hot left sided face on day 2-4.? steroids or the Tax.....I can conceal the redness with clinique

Little bit of joint pain but well controlled with paracetamol

I hope you have been keeping well and no bad side effects xxx

.

Member

Re: Pain in Kidneys

Hi Donna,

 

Glad you've got your voice back and are feeling better.

Thanks for the info on the cream will order some this morning!  I do take Iburfren and paracetamol and the hospital gave me some codine for when its really bad, but they knock me out so try not to use them till I really need them.

Yes it's nice to have her home, but I know that time will fly by and we will be waving her off again Smiley Sad

Three weeks will soon go, so not long now till you can have cuddles and catch up Smiley Happy

I'm ok feeling a bit low this week, which I don't understand because my daughter is home and I should be on a high!! but I just feel out of sorts this week, but i'm sure I will be fine in a few days!!

Heart scan went well yesterday, some good news for a change.

Good look for tomorrow, just think only one more to go after tomorrow Smiley Happy

 

Speak soon,

 

Pinktulip

Member

Re: Pain in Kidneys

Hi Pink

I saw the oncologist nurse on Friday...she asked if I wanted to defer for a week or two due to rough time I had lately with infections etc.....I said no because I feel ok now!

She agreed that my symptoms were as a result of the viral infection I had......possibly the mouth was due to TAX....my hands and feet feel like they are burnt at times.....I brought udderly smooth extra care cream with urea.....was recommended by one of the ladies on here.......it works for me and keeps my hands and feet soft and takes away the sensation...... (I bought it on ebay)

Do you take ibuprofen for your bone pain?..........you can also try the rub in variety

You may not experience any increased bone pain on TAX.........remember everyone is different.....so fingers crossed x

My voice is back.....so enjoying catching up............I bet you are enjoying catching up with your daughter.....less than 3 weeks now for my son and wife to be home......... but will hate the goodbyes :-( for another year.

Keep strong Pink....you are doing so well........and we are working through this journey. ..........

Take care

speak soon

Donna xxx

Member

Re: Pain in Kidneys

Hi Donna,

 

Glad your feeling better, I hope you've got your voice back now?

Yes I know what you mean they are always are babies no matter how old they are, she came home this weekend, so we have a lot to catch up on this week. 

 

Yes i know fourty five minates was unbeliveable, but I feel like I have paid the price this session!!  Wow you do seem to be flying through them now, after Thursday you only have one more to go!!  Have you had any other side effects apart from the poorly side of things? 

 

I am having problems with my feet, burning and aching all the time, some times I can hardly walk, I feel like i'm about a hundred and ninety some days!!  Nothing they can do for it apartently and it will only get worse when I start TAX!!  not looking forward to that aspect of it!

 

It definatly does make you reevaluate your life, things that you seemed to spend most of your time stressing about, really don't seem important anymore, and I definatly don't want to spend all of my time at work and miss out on things with my family and friends anymore!! The old saying lifes to short, definalty rings true when you go through something like this!!

 

How did it go on Friday?  i hope all went well?  Good luck for Thursday, just think after Thursday only one more to go Smiley Happy

 

Good luck

 

Speak soon

 

Pinltulip xx

 

 

Member

Re: Pain in Kidneys

Hi Pink

thanks I'm feeling 90% better...still gruff voice

 

I can imagine how much you are looking forward to seeing your daughter...its great when they come home from Uni...always missed them when away......I bet she can't wait to spend some time with you.....they may be adults but we are always their mum's............my yongest son just finished his dissertation handed it in last week ...but he was at local Uni.so didn't miss him being away. 

 

Can't believe your last FEC was through in 45 mins...... I was lucky with the FEC and had no problems other than one episode of high temp.

 

I always ring the hot line for advice...I had antibiotics for 7 days.....finish today...I have my usual oncology appointment on Friday to see the chemo nurse...with chemo Tax scheduled for next Thursday....number 5....seems unreal how the time has flown. I have always been career driven........but now I don't give two hoots....... I have loved being home and spending time with my daughter and grandaughter........watching her go swimming, on picnicks, playing ........ things I never had time for before :-( This has made me reevaluate .....and I don't intend to return to my old stressful job.

 

I hope you continue to feel better ...take care  xx Donna

Member

Re: Pain in Kidneys

Hi Doona,

 

OMG you have been throught the mill! So sorry you're having a rough time.  I was getting a little concerned that I had not heard from you in a while.

 

I hope your feeling a bit better now and are on the mend?  It is annoying when you try and tell people how you feel and they don't listen!! At least they got there in the end?

 

Do you have a date for your son coming home yet? the situation in Tailand is not going to do your stress levels any good either!!  

 

I'm ok had a rough time with my final FEC last Friday, the nurse was on her last shift and I think she just wanted to finish her shift.  The whole treatment took 45 mins from start to finish, (didn't do the cold cap, didn't think it was worth it) and when I came out I felt really woozy and rough, but feeling better today, so fingers crossed things will start to settle down again?

 

Did you ring the hot line number? how long have you got to take tablets for? do you need to go back to the hospital for a check up before your next TAX? Sorry so many questions!!

 

I'm really pleased that its summer time, at least we can sit in the garden rather than being stuck in the house all day!!  My daughters home from Uni soon, really looking forward to some girly time together, she is a good tonic for me.

 

Hope you feel better soon

 

Take care

 

Pinktulip xx

Member

Re: Pain in Kidneys

Hi Pink

sorry for the delay in responding...............so glad you had a lovely holiday - lovely to hear from you....hoped all was ok xx

 

Prior to me having the herceptin and Tax all my family and me had a bad cough.....they still gave the Herceptin and TAX......however....my temp kept going up. They admitted me to hospital and I had chest Xrays etc but all clear....knew my chest was clear but who are we to argue

 

I told them it was my mouth that was sore.....with glands enlarged......They ignored that;  confident it was viral throat infection so sent me home with antibiotics incase it became bacterial.( I lost my voice for best part of 10 days....only now can talk gruff which pleases hubby lol )..

 

However four days later I still had high temp and sore mouth.....I.went to the hospital and finally someone listened.......they examined my mouth and concluded  I had a mouth infection (stomatitis) I had a boil at back of gum too.........they administered intravenous antibiotics and wanted to keep me in....luckily they had no beds...and they know I'm a nurse so was sent home with oral antibiotics.; which fingers crossed is now working....and I feel almost human again!

 

Regarding herceptin and Tax........The only side effect I had was mouth a little sore - went to GP for nystatin....but somehow my gum became infected...hence the saga above...,,,

 

I have not had any other symptoms...... no pain not even flu like.......taste is a little different but could be my mouth.....feel more tired .......but could be due to the infection I had....and the accumalitive effect of the chemo.....but can't complain!

 

Tax is given over an hour via infusion...again no pain.......went out that night

 

Ohhhh poo a little loose too (sorry  for details......but that settled too...again could be due to all the antibiotics I have had...so you may not expereince this....)

 

I'm glad it is summertime rather than winter........would make the days soooo long

 

I can't wait to see my son...been worrying about him too because he works in Tailand...who are under marshall law at the moment with curfews etc..in place......but all seems calm at the moment

 

I doubt you will have the symptoms I had...mine I believe was a result of the viral infection ..... but keep an eye on your mouth...that is one area they say is affected by Tax for alot of people...not to my extreme though!

 

Keep well pink and enjoy the sunshine.......I hope all your family are well too

Lots of hugs and best wishes xxxx Donna

 

Member

Re: Pain in Kidneys

Hi Donna,

 

Just wondering of your ok, not heard from you in a while?  Hope your not having problems with the TAX?

Had my last lot of FEC last Friday, heart scan next week then start my TAX and Herceptin the week after.

 

Let me know how your getting on?

Take care

 

Pink Tulip xx

Member

Re: Pain in Kidneys

Hi Donna,

 

So So sorry I’ve not been in touch for a while!  We decided to go away for a week in our caravan, it was booked last year before my diagnosis, we weren’t going to go but then with the weather and me feeling ok we went last minute.  I thought we would be able to access the internet but my laptop wouldn’t play ball!!  So really sorry.

 

Glad to hear you were ok with the Herceptin and it didn’t hurt or give you any side effects?   How have you gone on with the TAX? Have you had any problems/ side effects?  How is it given? How long did it take?  Sorry for all the questions!!

 

I am ok thanks we managed to enjoy the holiday.  The weather at the beginning of the week helped, we went for a few short walks etc but stayed away from public places and people.  I am tired today though and now got to get ready for my third lot of chemo this Friday!! Don’t want to go, but I never do but I know its for the best!

 

I wore a cap all week, while I was outside, not brave enough for my wig yet or scarf’s, but my cap made me look more like a tomboy so not sure which is worse at the moment? And I am in turmoil in what to wear when I go for my treatment on Friday?? Why is everything so complicated??

 

I hope you are coping ok with your TAX? Sorry again for late reply?

 

Please keep in touch and let me know how you’re getting on?

 

Not long now till your son is home for big cuddles.

 

Take care

 

Pinktulip

 

Member

Re: Pain in Kidneys

Hi Pinktulip

haven't seen you on here for a while I hope you are ok

 

Just to offer some reassurance being slightly ahead of you - I have just got home from having my loading dose of Herceptin.

The injection is administered ointo your thigh - slowly over 5 minutes. It was not painful at all

I stayed on the unit for 6 hours to monitor for side effects - luckily none experienced

I have my first dose of Tax tomorrow

Take care

Donna

Member

Re: Pain in Kidneys

Hi Pink

Sorry to hear you are feeling bit under the weather......usually day 8 feel near normal....apparently all changes when on Tax

You should feel confident with your wig.......have you tried several? I thought I had a fat head coz mine kept rising up ....then durrrr relaised I had not tightened the expandable bit.......so my head isnt too fat its the wig was too big lol

I still have yeti legs and toes.......typical lol

I just purchased udderly smoooth extra care cream ....it is recommended for when on Tax...apparenly hands and feet can become sore....so added to my shopping list ....feels nice....mind it was apparently originally made for cows....so no wonder I like it  :-)

The GSF (Neulasta)..I have a different one which I take from day 3-7 . can cause bad bone pain....I usually feel the pain is worse days 6 or 7......yours must be bigger dose in one hit.......so expect it would make you feel rough

 

As you said the herceptin first dose is given on its own to monitor for side effect ....after that it will be administered at the same time as we have the TAX....(Tax via drip over an hour and herceptin injection into thigh)

 

I avoid salad bars and raw vegetables in favour of cooked vegetables Raw vegetables like cucumber and celery have a higher chance of being contaminated with bacteria than cooked vegetables......... I avoid anything with uncooked eggs......I don't want to risk an infection

I have little sachets of ketchup etc....aware that once a jar is opened the bacteria moves in......my friends son has leukeamia....he is advised to have first squirt out of ketchup etc...then dont have any more.......so i adopted same principle. Having D&V for us could put us in hospital. I don't eat out ....too risky .....

 

My turban I got off ebay......its all ready made and I can just slip it on........I have several ........still hate them but won't go around bald....even in bed. I won't let hubbie see me and my 20 hairs lol .....

 

I have very fair eye brows......so not an issue for me....but you may loose them too........Does your hospital hold the workshops for look good feel better workshops....you book a session and get lots of freebies and tips....you can find your local hospital on  the link below .....http://www.lookgoodfeelbetter.co.uk/workshops-and-advice

 

I am counting the days down until my son is home in June....he works abroad and I haven't seen him for a year....so much want that cuddle.........

 

I hope this helps ..... you seem more positive.....this is a horrible journey we are on.......... sending you lots of hugs xxxxx Donna

Member

Re: Pain in Kidneys

Hi Donna,

 

Thanks for your reply.

 

Well I went for my bloods to be checked on Thursday, five attempts later my veins finally decided to give them what they wanted!!

 

Friday went as well as can be expected.  I did give the cold cap one last try.  This time it seemed to be a lot tighter and very very cold, unlike the first time.  Which make me think that the first attempt maybe wasn’t quite fitted properly?  But either way I have washed my hair this morning and although it pains me to say that it’s beating me on the dignity front, I have very little hair left now, so as you say I can no longer hide it from myself or the world!!  But I do have a few scarfs and a wig at the ready, not confident with the wig but I suppose it’s just another huddle to climb over??

But it might beat me on the fight to hide my illness and take my dignity for a little while on the journey, but it will not beat me on the final battle.  That one I am determined to win!! So no matter how many times it keeps knocking me down, I will keep getting up fighting.  One thing’s for sure that at the end of this journey I will be as solid as a rock!! My attempt to keep positive!  Sorry if a bit dramatic J

 

I got my husband to get me some false eyelashes from shopping, must admit I never gave my eyelashes a thought, thanks for the tip J  No idea how to put them on though? I have never worn a pair in my life so that’s going to be an adventure in its self!!  I also ordered a turban type towel, which has arrived with no instructions and I have no idea how to put it on? Any tips on how to put them on?? I’m afraid I think I have a lot to learn!!

 

I am feeling a bit under the weather today, yesterday was worse, I think it’s the Neulasta injection that we have to have 24 hours later, it seems to knocks me for six.  Do you find this is the same with you?

 

It sounds like we are both on a very similar journey, properly like most of the people on this forum.  You are a little ahead of me.  Are you having the Herceptin injection at a different time to your second lot of chemo (TAX)?  I know that you have to wait for six or so hours to see if we have any side effects from the Herceptin, but I thought that we have the TAX and herceptin injection all on the same day??

 

Also do you know if we can have dips while having chemo?? I know we carn’t have eggs etc but I don’t seem to be able to find any information on dips etc??

 

Thanks for replying and sharing your experience with me, it really helps to be able to talk to someone that is on the same journey.

 

Hope you are feeling well and had a good weekend?

 

Speak soon

 

Pink Tulip x

 

 

Member

Re: Pain in Kidneys

Hi Pink

I am sorry you have to have another operation at the end

I had my diagnosis in Janiary and op in February. I started chemo on the 20th March......

 

Regarding how you feel.....reading your entry.....could have sworn it was me writing it!

 

I have just had my third FEC....and due to start the TAX on the 21st May

I too am HER2 positive....... starting Herceptin on the 21st then TAX on the 22nd.....

I have had my second heart echo....for the TAX and herceptin..

I too will have radiotherapy post chemo....with a year on herceptin and tamoxifen for 10 years....

 

I lost most of my hair week 5 from staring - so during the 2nd course of FEC.....

I dreaded my hair falling out.......... my hair has always been my crowning glory......and with my hair intact  I didn't look "ill" However once my hair came out I had to look in the mirror and face the constant reminder I was on this horrible journey and I could no longer hide the fact from myself or others :-(

 

I knew my hair was going to come out so before I started chemo I went and got 2 wigs....almost identical to my hair with highlights etc......... I am now used to wearing it and I now accept this is me for now.....I hate looking in the mirror with no hair...so quickly put my turban or wig on

 

I have also bought false eye lashes........ aware they can fall out....It is also important for me to look as I always did....I dont want to look different or people to know I am on this journey unless I have told them...so wig at all times when out......I wear a turban at home and I have a hat with fringe bang

 

I have to say....I am a nurse and I have only met one person who kept her hair using the cold cap.....I also read research regarding the cold cap and near-freezing temperatures are supposed to reduce blood flow in the scalp, making it harder for cancer-fighting drugs to reach and harm hair follicles....but any rogue cells are not hit by the chemo...... so I decided to let the chemo do its thing..

 

All of your emotions...I have had...and I believe everyone else on here......so don't be hard on yourself...This is a journey we have to endure ........... we would be abnormal if we did not feel scared and like we have been hit by a truck..........

I hope Friday goes well for you ........just remember being low doesn't make it any better. or easier......... and I want to enjoy the summer....DON'T EVER APOLOGISE FOR OFF LOADING...........we are the only ones who really know how this journey feels....despite our loved ones supporting us xxxxxxx..

Sending you lots of hugs xxxxx .Donna

 

 

 

 

Member

Re: Pain in Kidneys

Hi Donna,

Thank you so so much for replying and for all your info it is a big help thank you and it also helps to know that other people are experiencing the same things as well, I do feel like I am on a nightmare of a rollercoaster both physically and mentally.  I have to for my bloods on Thursday ready for my second session on Friday, so I will mention it to them when I am there.  It does seem to have subsided now, but when it started it did stop me in my tracks and you do panic about everything! or is that just me??

May I ask where abouts you are up to on this rollercoaster?  I was diagnosed in Feb this year and had the lump removed in March and originally I was just going to have radiotherapy, but when I went for my follow up after my opp I was told that they had found cells in one of my lymph nodes and that they had got the tumour but they still needed to take more from the area to make sure they had got it all, and I am HER 2 positive.  So I am now currently having chemo, (second cycle on Friday), then I have got to have another operation, then radiotherapy.

 

I don't think it really hit me until I went for my follow up, maybe I was in denial at first, thinking that it was happening to someone else, and I would just have the opp then three weeks radiotherapy then back at work and no one would be any the wiser!!  How wrong was I!! now it feels like I’ve been hit by a truck!!  and on top of all that my hair has now started to fall out.  I used the cold cap on my first session, but over the weekend my hair has started coming out in handfuls.  Do you lose all of your hair regardless? Or does it just go thin? I'm not sure if to carry on with the cold cap now it's started to fall out or carry on?? Can you advise??  I'm not a vain person but I am really struggling to come to terms with my hair falling out!! Even though I have a really good family and friends network. I sometimes feel like i carn't really explain how it feels!! Is this normal or is it just me??

 

 

So sorry for the long essay/moaning, and thanks again for your reply. 

 

Thanks

 

PinkTulip x

Member

Re: Pain in Kidneys

Hi Pinktulip

sorry to hear of your diagnosis.

I am also unfortunatley on this journey....and being a nurse isn't always an advantage

I just wanted to hopefully ease your concerns.......

 

As you know treatment can affect how your kidneys work. This is usually mild and goes back to normal after treatment. You will have blood tests before chemotherapy to check how well your kidneys are working. However, I wouldn't continue taking paractemaol without advice,,,,,the paracetamol will mask any temperature and symptoms..................It is worth mentioning to the emergency line or your macmillan nurse ......you can sometimes have a urine infection without symptoms......they may test your urine just to eliminate. I also had back/kidney pain ...but it was nothing.......just the body adapting.

 

Remember you are going through all of this to be cured.....so ask the questions....once you know it is all ok...you will stress less and your body will relax

 

However, aches and pains can feel like they are in your kidneys..and every where else lol...... and we get lots of aches and pains which we always think the worse of........this mental torture does eventually subside.......

 

Regarding drinking too much......... aim for 1.5 - 2 litres daily....don't forget you also have fluids in your foods etc.

 

I hope this helps a bit.......... Best wishes ....Donna xx

Member

Re: Pain in Kidneys

Hello Pinktulip

 

Welcome to the forums, this must be very difficult time for you.  I’m sure other users will be along to support you soon. 

In the meantime, maybe you would like to talk things through with a member of our helpline staff who are there to offer practical information as well as emotional support. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

 

Best wishes

June, moderator

Member

Pain in Kidneys

Hello,

I am new to all these forums etc and not sure what it is that I am actually doing, but I was wondering if anyone was having pain in their kidneys from chemo?

I had my first chemo FEC T treatment on the 18th April 2014.  I am suffering form most common side effects which I was prepared for, but on Tuesday I started with pain that feels like it's in my kidneys? I have been taking my temperture regularly and everything seems fine.  I have been taking parecomal to help with the pain when it's really bad.  I am drinking plenty of water and have no other symptoms?  I have not contacted the emgeremcy number because I don't really feel unwell in myself.  I was wondering if this is a normal side effect from the treatment and has anyone else had the same experience?

Also silly question but is it possible to drink to much water? I was told to drink plenty of water, so I have been drinking roughly about five/six bottles of water (75cl) throughout the day. My husband and daughter have now started worrying that I might be drinking to much water and flushing the chemo out to soon before it's had time to work!! I have siad that I doubt it very much, but I thought while i'm on I would ask the question??

Thanks for any help/adivce in reply to this