Long term survival with long term chemo.

[*_Ragini_*]

Hi,
I have been on some kind chemo since 2000 October but have not yet achieved stable disease. This nasty thing seems to be one up on all the drugs and my condition is deteriorating. I am on Gemzaar-cisplatina and herceptin combo 2wks on and one week off. The week I am off my markers shoot up and comes down a bit after the 2 weeks of treatment. After 16 wks on this drug I am really tired and today I decided not to take treatment as I was too tired.I was asking the onco as to why does the dastard thing not respond to treatment so that I can be off chemo for a couple of mths. He told me that I am not an exception and that many Her2 neu patients are going thru the same thing and I should see the positive side of things that I have survived 5yrs with an aggressive form of cancer. I have heard from a lot of people on this board that they seem to have got some respite or the other from chemo. I would like to hear from people who have have been battling this with long term chemo and how you all manage to cope. I need some inspiration from people who have been at this for a long time.
I feel that if I take a couple of mths break this nasty thing will get out of control and if i continue taking chemo the quality of life is very poor. How does one make this decesion. Pl help with your opinions. I go for my scans next week to see whats causing the markers to rise. Pl pray for me. Thank you

Ragini

[lyn]

Hi there, don't get tooo disheartened, I have been doing the same thing since 1998 and they gave me 2-3 years back then because it was so aggressive, radical mastectomy, removal of chest and pectoral muscle and 16 glands all positive with no clear margin and not hormone responsive. My does as I ask, he says the fact that I should have been dead years ago means I must know what I am doing, with the help of this site of cours. The fact that we can have herceptin gives us a 47% better chance than those that can't have it. I have lost a few friends to BC who should have outlasted me let alone succumb to it. Each day we survive we get 1 day closer to a cure. I just seem to get rid of it, then it pops up again, I think we need to think of it as diabetes, and just keep it under control..I know some ladies have taken Xeloda as a maintenance drug for 10 years and I think I may end up in that category some day. I had a CT on my chest and liver today and all clear, so they say and I am having a MRI on my head neck and shoulder tomorrow so will know on Tuesday what my next episode will be. Mine has alway reoccured in the lymphs, skin and now in the remaining breast. You definately need a sense of humour to survive.

Love & Ggs Lyn

[Lyn-PS]

Forgot to mention, tumour markers can rise because the cancer is breaking down but still in your blood stream.

Hugs Lyn

[Patty H]

I've been dealing with this since 2000. But only stage 4 for around 3 years. The only break I got from chemo so far was because I ended up in the hospital for 11 days last year and after I got our I was off chemo for 3 months. I had a pity party this last weekend. maybe it's the full mood. I lay in bed thinking maybe it's about time to quit this chemo. The sorry thing is I don't really feel that bad. My feet and hands and mouth hurt from the xeloda but it's not like I can't do anything my friends do. Sometimes we just get tired of the battle. My husband had to fill out new papers for FMLA to get off work to take me to my treatment. The part on how long was this expected to last , my Dr. filled in" for life". I knew that but to see it in words also help put me in my pity party. I think we have these down days and then we pull out of it and start our fight again. So hopefully you too will get out of this slump and start again.
Patty H

[Pam P]

Ragini -- Yes, sometimes it seems overwhelming to be always under the chemo 'cloud'. I can only say you aren't alone. Try on the good days to enjoy as much as you can and on the not so good days to be patient with yourself. I am saying a prayer that your upcoming scans will result in a break from chemo.

[*_Patty D_*]

I too have been battling this challenging disease since 1994- I had a 8 yr reprieve but it came back in Jan 2003- to my lungs. I was given 6 months to a yr to live. Since then it has been one thing after the other with little teases of reprieves in between. I have had mets to my brain now bones with most recent scan showing a lymph node in my chest. So now I am on round #3 of chemo-I have had Herceptin all along which I think has helped keep me going this long.

It is an ongoing battle,lots of bumps and potholes along the way. I have had alot of meltdowns and "pity sessions" - and my hope and faith has taken a beating but I hang on- I tell my wonderful family and friends that I am not ready to give up yet-it is not on my calendar today or in the near future. I know my prognosis is grim but as I have been told by a dear friend- "If God brings you to it- He will bring you through it"

So hold on- don't give up- Remember this little saying I keep posted on my fridge- "Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, chocolate in one hand -a rose in the other, body thoroughly used up, totally worn out and screaming "WHO HOO what a rde!" God Bless! Live evey day you are able to the fullest and try to find something to smile or laugh about each day. The fact we can get out of bed each day is a little miracle in itself ! Patty D

[Celina]

Patty!! I love that saying....may I borrow it for my sister???

[joy]

ME TOO!
Love, Joy

[joy]

i have another quote on my fridge that applies to all of us, "Don't knock on death's door; instead ring the doorbell and run away! Death hates that!"
Love, Joy

[Sandy H.]

These are wonderful sayings! I love them both had not heard the last one. Thanks for sharing. hugs, Sandy

[Lyn]

Like I posted before, had my MRI today. I keep saying I won't die of BC I will choke to death on the pills I have to swollow every day, and guess what I did this morning, I was home alone, and one got stuck in the hard part of my throat, I honestly thought I had, had it, then after a lot of gasping it started to break down and that was worse it was toxic, and it was only a Neurophen (panadol) capsule so I went off to my MRI and I was told that I couldn't get my results Tuesday for my Onc I would have to come back today and get them, that was great , and of course I openend them, and once again, nothing exciting to report everything was gone except for a small something they didn't what it was but it was smaller than last time, so Kinda NED, chest was all clear as well, so once again I get a reprieve for who knows how long, so I have suggested to my Onc, maintenance Xeloda, don't know the amount or big guns, Herceptin/Gemza/Methotrexate/Carboplatin, that will really rock him, but like I said I have no idea what it is. So last lot of treatment was for Breast lump and skin, but shrunk my neck as well. You have to love this dance we do.

Love & Hugs to All, Lyn

[*_lu ann_*]

I decided after 15 months of tx that I needed a break and doc agreed. He also took me off herceptin because he felt it was not working any more. I'm not all too confident that is the case, but I'm on a break from everthing except monthly zometa for bone mets. My ca-15 markers have gone from a low 19 in Dec. to 29, 37, and now 54. I asked doc about the neulasta and luchine shots that I was taking for low white counts from navlebine and gemsar, but he didn't feel that was causing tumor markers to rise. I have decided to seek a second opinion and possibly change providers. I havn't been able to go in the office without getting nauseated from the smell of the place. I think I need a change.

On a good note, My daughter is graduating from Highschool next Thursday and I'm going!!!! Last year at this time I doubted I would be alive. God is good and He brings us through all the trials in our life.



Blessings to all, Lu Ann

[StephN]

Just remember what Scarlet O'Hara said:

"Oh, fiddle de dee, tomorrow IS another day!"

Don't know HOW many times I have said that to myself when things were not so great.

I was lucky that my chemo worked the second time and now I am only hoping my brain mets don't return. If it is not chemo, it can always be something else like the durned steroid anti-inflammatories that still plague my body with aftereffects.

But we keep our ears to the ground and share what we hear - that is the main thing - to keep in the loop of new information.