Recently diagnosed with secondary mets and just started treatment - could do with a bit of support.

Hello I’m new here and could just do with a bit of support. I was diagnosed a month ago with secondary mets in the lungs, chest/neck lymph nodes and and lymph node in sternum. My primary was in 2014 and after a lumpectomy, lympth nodes removed from armpit, 6 rounds of chemo and 20 radiotherapy I was given “the all clear”! As it was triple negative I wasn’t put on any meds. Start of this year after having the flu I never felt right and had consistent pains in my chest and back. After clear chest X-rays, mammograms and a bone scan my consultant referred me for a pet scan which is when I was diagnosed. I’m completely floored - didn’t see that result and scared. I have a 5 year old autistic boy and I just want to be his mum not live in this nightmare again:(( I’ve been in terrible pain and I have an awful cough- caused by the lungs. This has now started giving me terrible headaches, jaw ache and ear ache. obi this all frightening me but pet scan didn’t show activity in the brain. Nurses think it is the strain of coughing so much. I just started my treatment which is Capecitabine. Feeling horrendous:(( not sure if this is my symptoms still or the combination of the chemo too. Just feel like I will never feel better again. I have no energy, headaches, coughing, sore throat and just feel battered. Just wondering how long does it take to feel normal again, does it work? Anyone else experiencing headaches? I want to get my positivity back but I’m struggling. So sorry for the down post:( 

Hello Abney, sorry to read you have had to join us, and so sorry you are really going through the mill. I am on Cape. I have, in the past, had some nasty headaches, but they are a known se of Cape. They didn’t last long, but were quite “sharp” while they lasted. They gradually subsided as an se in my case. However, please do not suffer in silence - please tell your Onc, and stress how worried you are. It is common that Oncs generally start you off on as high a dose as they think you can tolerate, then gradually reduce it if necessary.

 

Please join us on the Xeloda/Capecitabine thread in the Treatments section of the Secondaries area. There are some very wise and helpful ladies on there.

 

Wishing you the best.

 

Hugs. Barton.x

 

Hello Abney
Welcome to our family of kindness and support …sorry you have had to join us here but there is a whole lot of info and support.
First of all …suggest you go on the cape threads where the ladies there all can help you with the se of the chemo pill you are taking.
Hopefully a lot of your symptoms are stress at the dx and not the secondaries. Stress and shock can really cause a lot of unwelcome problems.
It’s always harder when there are young children to think of but trust your oncologist , ask lots of questions and you will find a lot of very good info within this website too.
The capebecine thread is within " treatments" board …it’s been running for a very long time and most things are covered there and the ladies are always helpful .
Take a day at a time …
Carolyn xxxx

Whoops …Barton beat me to replying so a bit of a duplication…

Abney, Welcome! I hope coming here will help you release some of that fear. Not surprised at all that you are having headaches. Emotional stress, medication and stress from coughing all could add up to those headaches. I wonder also if the swollen lymph nodes in neck could be creating the numbness. Strange things can happen from this cancer that even doctors can’t explain. I have lung mets too. My lymph nodes in my chest area are involved too, but not my neck. I use to have this weird sneeze! I would get a tickle in my throat and then sneeze, but the sneeze came out my mouth not my nose. Oncologist kept saying he didn’t think it was from my cancer. Well I didn’t have it before my cancer . I could sneeze at least 100x a day. Then in 2012 I needed radiation to shrink a tumor. A few doses of radiation and the coughing was gone. It has  been gone for 4 years now and I had it for 7 years. They claim they don’t know how radiation could have fixed it. I think that tumor must have been pushing on a nerve and when it shrunk it stopped agitating it. Another weird thing to the story was when I got a cold the sneeze would go away. When the cold was gone the sneeze would work its way  back. I would start with one or two sneezes a day by the end of 2 weeks I would be back full force. I tell you this story, so you know strange unexplainable things happen. Please don’t keep suffering with your  headache, ask for help with it. I will say before cancer I didn’t even like to any kind of medicine, since cancer I realize there s no need to suffer! Good luck! FF

HI Abney,

 

Just want to say hello really.  I’m newly diagnosed with secondary and  I wonder if every twinge I feel is cancer or just ordinary stuff.  You were only diagnosed a month ago so it’s natural to feel down.  Personally, I went to my GP and am now on antidepressants.  After about two weeks I’m being to think they are kicking in and I can find my "new normal~ and enjoy being alive again. 

 

I suppose my message is ask for all the help that’s available to you.  

 

Stacey

 

 

Hello Abney?
I’m a secondary lady too, I understand your anxiety and concern for the future. I’ve done all the chemo and rads first time around and now I’m into my 16 month of Capecitabine. I have over time learnt how to manage my dose
Which is 1800 mg morning and night. My SE are aches and fatigue and headaches and generally feeling fed up. The worst time is between day 10 - 14 and my week off can be bad at times too as the toxicity has built up. This passes in time for the next round to start again! I have halved my work to 12 hours per
Week but due to stage 4 diagnosis we are entitled to claim the benefit of PIP. Ask
Me
More on that if you need information?
If I get enough sleep
And pace myself I can mange well, I am
On strong painkillers and these really help me, I’ve got past the worry of becoming addicted to them because I probably am by now but this is a very serious and painful illness so I’m not going to have hang ups over the stigma of painkillers etc they help my mind too rightly or wrongly but I’m coping with they’re help. I’m on an antidepressant as well. Plus I have a strong faith which gives me peace and hope whatever my future holds. Surprisingly exercising has been a God send which surprised me as I thought it would finish me off but instead it energies me! I hope by telling you a little about myself it has helped you Abney, keep me posted about your progress, love Emma xx

Hello Abney

Welcome to our forum I am sorry you have had to join us. As alot of ladies have given you their account of capecitabine and given you the thread to go on I wish you success with the treatment. Many ladies have lived a long time with secondaries and I hope you will be one of those.

 

You will feel frightened especially having a young autistic boy the other ladies have explained your fear of all the ach and pains you feel we all go through that. Do you have someone who helps you with your son he will give you the strength to try to be normal although there may be times when you will need to rest. But you can still be mummy for a long time and come on the forum to vent your frustrations we are here to share your downs and ups

 

Love and ((((hugs))))  xxx

Hi Abney,

 

like you, I went through what seemed like a total freak out, just before i began my recent course of chemo.

 

its all very scary. I had just been bereaved and i had headaches, neck aches , cough and sore throat. i was really tearful and I couldnt understand how the docs could just say, go on this chemo, when

i felt so very ill.

 

like Funnyface says, stress and anxiety can cause all those symptoms and once id had my first cycle of chemo, i felt so much better.  As the others say, Cape is a really good chemo and I wish you the very best response.

 

we do all go through these awful fears, my cancer journey started in 2001 and the cancer came back after 10 yrars, but however long youve bern travelling on this particulat train, fear still catches you out!

 

do keep posting on the forum, lots of lovely ladies will be here to support you.

 

Best wishes,

Moijanxx

Thank you so much lovely ladies for all your replies. It does help. I’m having a particularly bad night. I feel so ill and I can’t sleep. I do wonder if it’s my body adjusting to the drug??? I’m so sorry you are all on this journey too but I really appreciate the support and advice. xxxx

Hi abney I was like you a year ago I was on chemo for a full year diagnosed primary then secondary soon as primary chemo had finished so had to start all over again with chemo I was devastated but now I’m back working part time I’m back at the gym my hairs grew back and I feel a lot better. I have mets some in lungs and liver they have shrank last two scans my next one is beginning of November so I’m a bit stressed but trying to carry on as normal it does get easier love Julie x x

I think October is a hard month too it’s good they are raising awareness for breast cancer but you find its on every programme and you can’t get away from it x x

Hi Abney,

 

Sorry you’ve had to join us but you have come to the right place for support!

 

I was diagosed with lung mets almost a year ago. At the time I was coughing really badly. As the cancer has responded to treatment, it’s got so much better. But at the time, I was prescribed some coedine linctus which did help. I don’t know if it’s compatible with your chemo but it might be worth asking.

 

Hang in there!

 

Marion

I was diagnosed with lung mets in February 2013 - I was stable on Cape and Tyverb for 18 months and have been stable since March 2015 on weekly Taxol (switched due to tiny progression). I feel well and am active - I walk by the sea a lot with my dog Molly. I have two boys (19 and 16) who were 14 and 11 on my orginal diagnosis, hope that gives you some hope xx

Yes I agree with this - I get lots of random pains and a cough around scan time. Have no symptoms any other time!!

Abney, just wanted to join the other ladies and say Hi and welcome…none of us want to be here but we all support each other through good times and bad and hopefully we can do the same for you. I had cape when i was first diagnosed as SBC and it worked whiole i was on it…i coped ok with it although i found eating at times when tblets were due was a pain. I am sure most of your aches and pains are stress related and that tghe cape will soon kick in and start working. Please rant and rave as much as you like, we will all be listening.

Let us know how things go. Lots of love. x

Hi Abney

I was diagnosed with sbc in bones in July then lung in October I am due to start on cape next week and am petrified like you I ache everywhere and got bad headache think this the stress can’t stop crying, so you not on your own

Would love to keep in touch and go on the cape journey together

Sending big love

Karen xxx

Hi Karen I’m so sorry you are on this journey too but this forum is such a support and makes you realise you are so not alone. Thankfully my headaches have cleared… I stopped taking ibuprofen and tramodol- also have limited my paracetamol intake as I think that’s what was causing it. I was on those tablets for about 5 weeks and taking the max- had to stop pain some way!! I can’t be sure that was the culprit for headaches but the fact they have stopped is making me think yes it was!!
I am on my week break from Cap. If I’m honest I am very exhausted and my cough is just awful - I don’t get any sleep because of it and it’s causing me to be sick but I don’t think any of this is to do with Cape but the actual cough. Have you got a cough? This is what is really getting me down as its so dibilitating. I do hope it will go as its a constant reminder of the gremlin living inside of me! Oh I know what you mean about the crying. I just can’t stop as I really still am in shock! And I just feel so grey:( but I hope once Cape does its work and the symptoms subside I will feel more positive. When I first spoke to onc he said it could take 6-8 weeks for me to feel better. So I need to be patient!!

Wishing you lots of luck on Cape and it will be really good to support each other. Please let me know how you get on. Have you seen the thread for Cape? Lots of lovely ladies on there who have been on it for years and have some fab advice.

Sending you a big hug
Abney xxxx

Hi abney

Thank you for your lovely message no I have not got a cough, chest Is a little tight it the headaches and aches and pains that are giving me grief.

Please keep in touch I will let you know when I start the cape seeing oncologist next Thursday to let me know when I starting hoping x praying that my next scan won’t be till after Xmas so I can enjoy a good Xmas with family.

Keep smiling sure we will get through this together

Lots love karen xx

Hi lovely Abney and Karen,

 

Abney, I DO get a cough sometimes, often just before my chemo is due, strangely enough! I am on Eribulin and Ive noticed that my vocal chords are pretty mucusy when .i sing lower notes! Another lady said she gets just the same!

 

i think these chemos may well temporarily affect us in different ways.

 

With Cape…I cant remember but it makes sense it might because you are swallowing it arnt you. So try and up the amount of water you are taking…esp when you take the tabs to Flush them quickly past the voicebox and throat.

 

Abney and Karen, re the fears and tears…just want to say that I know it often sounds as if us 

 longer term cancer ladies sound very well adjusted and more adapted to our situation…than yourselves…and that can make you feel a bit on your own.  

 

What you are going through, we still do go through every now and then…but the initial shock does shake your confidence and it takes a little bit of time to get that back.

 

everyone does that in their own way, but yes chatting with others in similar stages can really help, as well as meeting up with good friends who havent got cancer, as they will bring back some normality into you lives and 

Help Balance thingsxxx

 

I was one of the very most frightened people when I was first diagnosed. I remember how lonely I felt especially at night. This Will get easier, you Will feel you have some control as your treatment progresses.

 

we are all here for you, keep postingxx

 

love and hugs

Moijanxx