I’m not sure whether surfing the net is good or bad! I have been rather depressing myself today! Is anyone out there who just wants to chat?
My chemo is due to start tomorrow and I’m really scared - far more so than last time round - probably because there is more to lose!
Geraldine
I am not going through what you are, as it is my mum but I am having an off day, but if you want to chat I will see what I can do to cheer you up lol
What is the situation with your bc, if you want to chat about that.
Hugs Jules x
Hi Jules - I’m 39 and was diagnosed with secondaries last week, about 18 months after the first round of treatment was finished. Last time round I coped quite well emotionally but not this time. I’m dreading chemo tomorrow - though having done it once it should be OK - guess as I said before I’m just depressing myself by surfing the internet!
Sorry my boss brought me some work! but he has gone now! No your being really normal worrying you have been through such an emotional time, dealt with it and now you have to go through it again, I dont blame you for worrying. I won’t say things will be fine, because I don’t know that, and I think its patronising. What I will say is try and stay positive as they can do so much for bc these days. Where are your secondaries?
cyber hugs
Jules xxxxx
It has spread to the lymph nodes in my chest. My onc. says there are also hotspots in my bones ( i know these aren’t so worrying). My onc. is really positive but he was last time!
Now I can feel the lumps in my chest I imagine they are growing rapidly! Thanks for taking time to reply 
Geraldine
cuddles hopege, i cant imagine how your feeling!!! dont know what else to say but im here if you need to talk
Hopege
You are entitled to be feeling scared, my heart goes out to you, how do you ladies cope, but you do. Do you have a supportive partner.
Jules xx
My husband is a star but he finds it hard to talk. His way of coping it to keep busy! Good thing really we are having building work done to the house which I can’t get excited about now! I just feel in limbo!
Geraldine
Oh god your poor thing, builders are a nightmare at the best of times. I hope there not being too much of a nuisance. I
t must be hard for your hubby seeing you suffering and feeling helpless to do anything about it. I feel the same about my mum and just feel such dread at the moment.
Jules x
Hi Geraldine
Just picked up your post on this thread. I’ve been on chemo since September 2006 (Xeloda). What one are you going on? I was on Paxitaxol 3.5 years ago and I can’t remember what the first one was (I don’t think they used to tell you then!) except it was pink and I couldn’t work for 10 months as it totally floored me.
I think it depends on which chemo you’re going to have. Like you, the one thing I really dreaded was having to go through chemo again but each time it’s been different and the side effects have been different. I was 40 when first diagnosed.
I said to myself that I wouldn’t go on here today …!!!
Carol
x
Thanks guys - your responses are so heartening. Just knowing someone is ready to listen is great.
I’m starting Taxotere and avastin tomorrow - so fingers crossed it’ll wipe out the baddies in me! I think I’m also going to start biophosphophonates (sp.) so one way or another my body is going to get a hammering over the next few days!
Geraldine
I am glad that I can be here to reply, even if I dont say anything that useful, just hope that listening helps a bit.
Jules xx
Hi Geraldine and Jules
I have been on different types of chemo since May 2004 so I know how you are feeling. Once you start treatment I know you will begin to feel better.
Good luck for tomorrow Geraldine.
DebsinCornwallxxx
Hi Geraldine,
Just wanted to offer my cyber hugs and good luck for tomorrow. I started taxol and Avastin 2 weeks ago and had my 3rd taxol (weekly) and 2nd Avastin (fortnightly)today. I can really indentify with how you’re feeling. I’d found the previous 2 weeks of treatment a lot easier to cope with than I’d feared and have tolerated it all very well so far and have been carrying on pretty much as normal. However I really felt like ripping the drip out and tearing the cold caps off as it started this morning and just saying “no more” but it’s amazing how you somehow pull yourself up and then time flew much quicker and I’m feeling more calm and positive again now.
My husband too finds it hard to talk and deal with even though he is extremely supportive. He’s off work this week but his mum came up to sit with me during the chemo and be the “runner” for drinks, cold caps etc. and he was off upstairs most of the time and has now disappeared off to yoga which I know will do him good and I know he really cares but just finds it so hard that he can’t “fix” the situation and so keeps busy like it sounds your husband is doing too.
I saw your post yesterday about working and secondaries and meant to reply but yesterday got very busy with bloods etc.
When I was first diagnosed with my primary DC 5 years ago we’d just relocated for my husband’s work and I was currently not working as I’m self- employed and had to build it up from scratch so waited until after surgery and 4 and half months of chemo. I felt at the time that I couldn’t possibly have juggled work as I felt so tired through the chemo.
I then went back to “normal” life and built up my piano teaching business quite successfully but kept it part-time so that I wasn’t too exhausted or overdoing it.
Then I found a small lump on the mastectomy scar last March (I’d gone just over 4 years since the primary diagnosis) which turned out to be a local recurrence.
I then had a very small op under local anaesthetic which was so straight forward compared to the ops I’d had before and then I had a month of radiotherapy which we went to stay in London for as there was a long wait in Wales so again I didn’t work during that time for 3 months. I was so well through the radio which felt so much easier to handle than the chemo and we managed to have a really nice time seeing old friends and doing nice things that we’d never managed to before when we’d lived in London for 10 years.
I went back to work last September and everything seemed fine again. I then had a routine check-up in February of this year and my oncologist suggested I had routine tumour marker blood tests and we asked about having a CT scan as I’d not been scanned at all and now we have BUPA through my husband’s work for which I’m very grateful. The tumour markers came back fine but the CT showed abnormalities in my lungs and a further PET scan showed I have very small secondaries in both lungs and in my lymph nodes in one lung and round my neck area which obviously was a big shock.
I then started Taxol and Avastin, as I said earlier 2 weeks ago and will have PET scans every 8 weeks.
This time, regarding work, I feel at the moment determined to keep it and life going as normal as I possibly can for my sanity if nothing else!! I am currently on Easter holidays from teaching for 2 weeks which is good so I will have to see how I go and know I may have to change my view if I’m not well enough as I want to be well enough to fight this disease for as long as I can and also this time the treatment is open-ended at the moment so I have no finish point at the moment as it will depend on what the scans show.
We’ve just booked a week’s holiday to the South of France for early May just after the first PET scan as I will have to have a fortnight’s break from chemo at that time and for me it really helps to have things to look forward to and try and plan for which is hard when we don’t know what the future holds.
I’ve just been awarded DLA under the Special rules. I didn’t even see the forms as the social worker from the hospital took all my details over the phone and dealt with it for me. We have been able to order a car under the Motability scheme and I’ve got a blue disabled badge which seems very odd as I’ve no symptoms at the moment but things can changed very rapidly and I have been getting some joint pains from the taxol which start 2 days after treatment and last for a couple of days.
I’ve got a couple of small blisters on my hand and slight infection in my mouth but other than that had no sickness and only very mild nausea so pretty good on the whole. I’ve been able to play badminton on both weeks the day the after chemo which I couldn’t have imagined doing when I was on the 3 weekly FEC 5 years ago.
I’m really sorry Geraldine, to have waffled on so much but your emails really spoke out to me and I don’t mean to sound like it’s just “me,me,me” but I wanted you to know that you’re not alone and I can empathise with how you sound to be feeling.
You be strong tomorrow and just keep thinking that it will be over in a couple of hours. I will be thinking of you. Are you trying the cold caps?
If you want to private message me please do any time. Do you have private insurance to to be having Avastin? BUPA are funding it for 3 months in the first instance which will be reviewed so we’ll have to see what happens.
It’s a real rollercoaster ride and so uncertain but I’m so keen to try and keep positive as it does help me and those around me so much but I think we also need time and space to cry and rant an rave about it too from time to time!!!
Good luck and I hope I haven’t bored you to tears!!
Anne xx
debs i guess you are triple neg? what chemos have you ben on ? i am on xeloda alone now and fretting it wont work .have a real stressy day today . sorry
love Tracy
Hi Tracy,
In May 2004 I had 6 x FEC worked really well changed my diet became a veggy and took an ayurvedic remedy called Carctol kept me fit until Jan 2006 showed
growth in liver, largest tumour in largest cluster 7cm started xeloda and by June shrinkage to 3cm. Xeloda only stopped working last Dec so have faithin it. If it worked for me it will work for you.
love Debsin Cornwallxxx
what is carctol and where do you find it ?
when first diagnosed lots of publicity re natural remedies this was one it really helped me onc said he didnt know what it was but if it worked it was o.k. with him he had the pills checked out in pharmacy and said they wouldnt harm me they are herbs.
DebsinCornwallxxx
Hi Geraldine, just seen your post. Hope your chemo goes well today.
I too am going through the taxotere/avastin treatment. I have it together every three weeks, together with my bisphosphonates. I had my third round yesterday.
I was devastated with my secondaries diagnosis last summer. It first appeard as small hotspots in my ribs, and then a few new ones appeared in a couple of veterbrae and in my femur. By Christmas I had four lymph nodes showing signs of cancer, so they put me on the current treatment (before it was just bisphosphonates).
I had my first scan yesterday to see how the drugs were working, and was delighted to learn that the lymph lumps are all shrinking. One has shrunk by 40%.
It has been a tough treatment for me, though, so far, and I ended up hospitalised during my second cycle because my neutrophils dropped through the floor and I got an infection. My dose has now been reduced from 160 to 120 and I am hoping to avoid a repeat performance. I don’t need to tell you, I am sure, to listen to your body when you are going through this chemo and don’t take any chances with infections - unfortunately I spent the first part of my second cycle hanging around A and E with my husband who had to be admitted with cellulitis. I am sure that didn’t help!
Anyway, I too have waffled, but hope you will be back on here soon to tell us how your treatment went (where are you having it, by the way?).
Deirdre
Hi Deirdre,
Had just been thinking of you today as I remember you sent me encouraging posts when I was diagnosed with secondaries a month ago and going to be starting on Taxol/Avastin. I’m sorry you’ve been having a tough time with the treatment. I’ve had 3 taxol and 2 avastin so far but am having the taxol weekly and Avastin fortnightly and am tolerating it well at the moment although I’m feeling tired at the moment as I too had treatment yesterday. I didn’t sleep much last night - I think it’s the steroids that kept me awake!
That is fantastic news about your scan though. Really great to see it’s working and something concrete is happening. I have my first PET scan since starting the treatment on May 9th so fingers crossed for then! How many rounds are you having altogether? Mine’s open-ended at the moment and will be a case of monitoring the scans and seeing how I tolerate the treatment too.
Anyway take care and do keep in touch with how you’re getting on.
Anne