So So result

Went for my checkup today and the result was pretty much as expected.  I still have to have a CT scan as my physical was fine but my CA125 has gone up to 1200 from 267 six months ago.

I had a CT scan also a chest X-ray then and nothing was visible.

I feel and look fine and have really enjoyed the last six months virtually free of hospitals and doctors -
nearly a normal life!
I start Caelyx -as a second line therapy in the New Year - at my request as I don't want to spoil Christmas - so it is out with the wig again I guess.

I know these are the same drug under different names - Liposomal Doxorubicin (Caelyx, Myocet, Doxcil)  is there any difference in the reactions as I believe they are made by different companies?

Any advice on handling the effects of Caelyx would be most welcome,

Thanks and hugs,

Ruth in the UK

[katems]

Hello Ruth

Sorry to hear that your results did not give you NED .

My latest scan at the end of Sept showed more 'thickening' over the left abdominal wall and an irregular mass above the bladder which looks more extensive than previously seen. In actual fact my tumour never went away which is why I think I never got my numbers down lower than the hundreds - which wasn't bad considering I started at over 7,000 in Jan 07.

I managed only 9 or so weeks off chemo before I started Caelyx of which I have had two so far. I go back next Monday for my third before another scan and then a decision to decide if I am benefitting from it. If not I hope my onco will suggest something else. I don't feel we here in the UK have the range of options that seem to be offered in the US.

The Caelyx seems quite bearable although I have felt unwell at times. I always wonder whether it is the chemo or the cancer when I have an off day. I am very careful about keeping my hands and feet cool especially in the first week and have quite cool showers which I don't like very much. So I haven't suffered from the hand/foot thing so far anyway! I get the usual constipation after the anti-sickness  meds but I can sort that out using a variety of things. My onco said that the Caelyx doesn't cause your hair to fall out and she has been right so far. Mine has continued to grow albeit slowly.

I get it on a 4 week cycle and my understanding is that it takes longer to work and therefore your body needs a bit longer to recover before the next lot.

Keep cheerful and enjoy your Christmas

love
Kate in the UK

[vegas2cr]

Oh Ruth I am sorry..Don't know about the drug but sending you hugs from Costa Rica.  Stay strong my friend.. Ronni

[Jan214]

I am so sorry you have to go through this again.  At least we get an again.  My onc picked Gemzar for my recurrence and that seems to be working.  I don't know much about Doxil, but hopefully Marty will be along to tell you about it as Leslee has been on it awhile.  I know they say to use ice packs on your hands while you are getting it.  You are lucky that your Dr will let you wait.  I wanted to wait until the new year as I didn't want to go through yet another holiday season feeling crappy but...
I am glad you are feeling so well and hope you enjoy your holiday without incident.

KATE:  I often wonder why I feel bad when I don't think I should and someone gently reminds me that I have cancer.   Except for the initial symptoms that led us all to the Dr. we don't expect to feel bad from it.  Except for the initial surgery and staple removal I didn't start feeling really bad until the chemo so it is hard to chalk it up to the cancer. I am sure you know about abnormal cell growth and I have read that that alone can cause pain and it interferes with your normal cells abilities to do their job so it throws your whole system off.  I would be interested to know what options you think we have that are not available in the UK.  I hope the Caelyx is working for you as changing treatments can be harsh also.  Good luck.
Jan

[SimplyStar]

Leslee has had 7 infusions of Doxil so far,  they did not tell us about the foot and hand syndrome until it manifested itself in the 2nd week after her 2nd infusion, I guess that this is the normal time for it to appear.  We found the best do's and don'ts on the Doxil web site, with the cooling added now, to infusion site and feet, during and after chemo, she is doing much better and sucking on ice chips while getting infused. she hates the cool showers also.  change bed linens , especially pillow case daily. she still takes her cranberry capsules and drinks the cranberry juice, activa yogurt, ginger, sage and green teas. Vitamine C 2400mg, Multi vitimine, COQ10 is very important to take with Doxil to prevent heart damage.  Eat fish {Halibut} and Broccoli  as much as possible in combination. Avoid hot spicy foods.  don't wash dishes in hot water, wear loose clothing, especially around waist and ankles, avoid tennis shoes.  Eat all the fresh fruit and veggies you can.  Leslee has been doing very well on this after she got control of the side effects. Watch the constipation, she takes a stool softner  2 to 3 times a week. Drink plenty of fluids to keep kidneys flushed. Her hair did not come out with this. Leslee works at an active job, half days 5 1/2 hours,  and has only missed work after the second time because of the hand and foot thing. they gave her a natural pain killer, and this seems to work well, mostly for the "arthritis" type pains.  she has neuraphy in the hands and feet mornings but once up and active this dissapates.  Her typical lunch at work is a salad with oil dressing, yogurt, an apple and her juice.  she bought a pedometer this week end and is going to try at the minimum of 5 miles per day.  She has gained weight on the steroids and they are taking her down on those now. Will decrease 10% every 2 weeks.  If you have any questions I will try and get the answers from her for you. Good Luck. The one main thing is the COQ10.   Marty

[Ang80]

I am from the UK as well.
My mum is currently on her 1st reoccurence. She had stage 3 March 2005.
Mum has been given carboplatin and taxol again, which she had the first time. Mums Drs didn't mention Caelyx.
Her CA125 was 512 when she was first ill, then it went down to 12, then rose to 31 with this reoccurence which is a small liver mass.

[stephers1]

When I was on Caelyx I did not lose my hair, although my doctor said I would. Also I was allergic to it and received a bad skin reaction brought on by heat. You must stay cool and no friction. My reaction was bad enough that they pulled me off of it, but think it would have worked. Just a gut feeling. Silly I know.
I started to the gym on caelyx went on vacation and really didn't feel that bad other then the skin reaction. Good luck to you.

[EchoUK]

Thanks to all for your responses and good wishes - some very helpful info.there :-)

Kate- I never achieved NED anyway - they couldn't find out why as the CT scan, chest X-ray and physical didn't show anything but my CA125 only went down to around 270 (started at 6000) after surgery and first chemo. I couldn't tolerate Taxol so had to continue with Carboplatin alone, 10 treatments in all. Last one was May 7th. I thought the onc. said a three week cycle on Caelyx - hope it is four like yours!

Ang80 - Your mother seems to be doing well in that she can have the same  chemo as previously - as I understand it that helps keep her options open in the future. She wouldn't be offered Caelyx or any other chemo if the first line one worked for her again - at least until/unless it stops working.

Hugs to all,

Ruth in the UK

[CFK]

I finished course of Caelyx in September - I didn't suffer too badly from side effects - sore feet and some skin irritation and although my hair didn't grow much I had no hair loss. I wouldn't worry too much about the heart thing as the current version of Caelyx is not as harsh on the heart - I was given an ECG to check I would be ok. The treatment didn't work too well for me although it did keep things stable (enlarged lymph nodes went down with treatment but are still enlarged). I am at present on tamoxifen to see if things can remain stable without resort to more chemo at present. Why are you starting more chemo based on CA125 rise only? I was told that if rise in CA125 was only factor, a 'wait and see' option would be taken. Good luck with the treatment and I hope you don't have too rough a time with it.
Cath

[EchoUK]

Hello Cath,

I did ask the question about starting the chemo again - they said it was up to me but they recommended that I did the course.  When I saw the oncologist last he said that he was prepared to let the CA125 rise to around the 1000 mark but would wish to start chemo then. It is difficult to know which way to go isn't it? I suppose as my CA125 has risen quite a lot in a shortish time that is the reason.  How many treatments did you have of Caelyx and was it every three weeks or four weeks/

Ruth x

[SimplyStar]

when Leslee recurred, Mayo suggested a trial first, that did not work, The doxil she gets every 4 weeks, they say she can take it as long as it is working. Usually at least 4 but can go up to 12. Usually results are not seen until after 4  they say.  they do have her lined up for Gemzar next, but if this is working they will continue it. What they are trying to do is get a remission of at least 6 months and then do the first line again.

[rmarie]

I did a  combination of Doxil (caelyx) combined with carboplatin for my recurrance.  I was also on a 28 day cycle.  I did not lose my hair, had nausea, however the pills took care of it.  My hands got dry, but never developed sores in the hands or feet.  I followed the rules for doxil, no serious walking or working out the day before, or for 3 days after, tepid baths and i was told no dish washing.  Hot water can burn the hands and cause a skin reaction as can repetitive activity, as in exercise.  I forgot, lose clothes that don't rub for the day before and 3 days after.  I did get a rash on my knees from jeans rubbing and broke out after going into a Physical Therapy pool ( I don't know if was the temperature or the chemicals).  The web site tells the rules quite nicely.  

[rmarie]

Forgot, I did get anemic and got procrit to raise my counts.  I did however continue to exercise throughout the 6 months I was on it.  Good luck to you, and I am sorry you have to go back on the stuff.
Positive thoughts to you
Marie

[Brownie3321]

Ruth - I am so sorry you didn't get the results you were hoping for. Let's hope you get it this time!! I don't have any info about the chemo drug, I just wanted to let you know I am thinking and praying for you. With love, Deandra

[EchoUK]

Just want to thank you all for advice/good wishes.  Have had a few nervous moments wondering if I should have put the new chemo treatments off until New Year but as I suffered from not being able to taste anything last time - apart from whatever the Caelyx might throw at me - I decided I would rather have a good Christmas as I feel quite well at present They couldn't fit me in for three weeks anyway so would have started a few days before Christmas!

Hugs to all,

Ruthx

[crecco]

I am sorry to hear you didn't get the results you were hoping for. SimplyStar's advice for Doxil was pretty much the same as they gave me, with the hand-foot sydrome one thing to watch out for. I was on it from Jan to Aug of this year. I did not lose my hair either although the onc said I would. It didn't even thin!  But I did experiance bad fatigue, so i am glad to hear that you get to wait until after Christmas. I hope you do well on it and that it will bring those counts down for you. Best of luck and LOL Chris                          

[SAm_in_the_UK]

Hi Ruth, I think we have posted to each other before. Are you being treated at St Lukes in Guildford ? That is where my mum was treated.
Sadly my mum has passed away, but I thought I would let you know her experience of Caelyx.
Mum didnt lose her hair, it did thin but nothing you could really notice.
The hand and foot syndrome kicked in at tx 3. Mum used aqeous(sp) cream. It is really cheap and you can get it in superdrug. It really helped.
It was my mums heart that gave up in the end. I had read that you should have a heart test (muga test) when on caelyx. I mentioned it to st.lukes on mums 3rd tx. and her onc. was surprised that she hadnt had one, but didnt suggest having one. I will always wonder.....
Mum also had a blockage. Please do all you can to stop this. Mum only took constipation relief when she had constipation, her nurse said she should have taken it all the time to keep her regular.
Sorry if my posts offends as my mum has passed away, but if I can help someone through the tragedy of losing my mum it has to be worth it.
Much love and luck to you. God bless, Sam x

[EchoUK]

Hello Sam,

Thankyou for your message - know you were 'on site' while your mother was having treatment.
I am being treated in Shropshire.  They did ask if I had ever had any heart trouble but no-one has mentioned a test so I will ask before I start! Had your mother had any heart trouble before her treatment?
I hope you are taking care of yourself and looking to the future as I am sure your mother would have wished,

Love,

Ruthxx

[EchoUK]

Thankyou for your good wishes - you were on Caelyx a long time - how many treatments did you have - did it work for you?  I didn't lose my hair on first line treatment - I had Taxol and Carboplatin to start with but had to stop the Taxol on the second treatment. That caused my hair to thin but it came back on just Taxol,

Love,

Ruth x

[crecco]

I recieved my treatments once every 4 weeks. In th beginning it dropped my counts some but ended up pretty much just leveling them off. I never did go under 400. By the end of July they had gotten back up to 701, that was the reason for the switch to Gemzar. I also had a couple of treatments delayed due to the hand-foot syndrome that developed. I hope that it will work for you. LOL Chris

[Helmar]

Hi Ruth...I guess there is good and bad news with the results of your tests, but I suppose if you are feeling pretty good, that's a bonus. I'd still be happy to trade my 5750 for you 1200. :-) I think it's a fair idea to wait until after Christmas to do the chemo though, as those few weeks won't make much difference.... like 1000 in about 6 months. I can do that in just one month. :-)
I've had Caelyx... only 4 shots as I ended up with about 6 large and very sore mouth ulcers, but it did work well.... and was still working for 3 months after I finished. Even though I don't have heart problems, my Oncol. sent me for a MUGA to ensure my heart was fine, as this one can damage the heart. I hope you continue to feel well, and the Caelyx does a good job for you. Hugs...Helen...

[SAm_in_the_UK]

Hi Ruth, thanks for your well wishes. No my mum had no heart trouble before, that was the reason they gave for her not to have a muga test. I am looking to the future, but can't help but 'lurk' on the sites that have helped me so much! Best of luck, Sam x