I saw a consultant at the Marsden yesterday and he is suggesting trying a chemotherapy called caelyx(one of two drugs also known as liposomal doxorubicin) I had not heard of it before but think it may be also known as pegylated doxorubicin.
The thinking is that caelyx may shrink my neck and shoulder tumours a bit thereby relieving pressure on nerves (causing pain) and veins (in danger thrombosis and stroke.) 20% chance of ‘working’ he reckons. Won’t save my life but may give a bit more quality time.
I decided in March to stop active treatment (which man at Mardsen said was the right decision at that stage) and hoped for a period of living with cnacer without too many symptoms. This hasn’t happened because I’ve been in pain, and very tired from the pain killers I take. So I think I will try one or two cycles to see if I can grab some more quality time.
Man at M. says the pattern of my cancer growth has been that each chemotherapy works a bit for a short time but then stops working…so maybe caelyx will also do the same. Its an anthracycline and its now nearly 6 years since I had AC.
Does anyone know about this drug? If so, how did you find it?
Jane
Hi Jane,
I have not heard of it or noticed anyone on my chemo unit on it.
Just want to wish you all the best and crossing everything that it works for you.
When we get to this stage of the disease we have to make the decisions that are best for us. No decision is an easy one or taken lightly.
Constantly feeling sick and tired plus not being able to do simple things is just so unfair. That is my situation at present and I am finding it so hard. Fed up of being robbed slowly of my life.
I really hope this drug will give you quality time, shrink the uggers and give you your life back. Plus the side effects will be bearable.
Love Debsxxx
Hi Jane
I haven’t heard of it either but did do a bit of googling - as I’m sure you have too. Found this:
Caelyx is a form of doxorubicin that is enclosed in liposomes. It is sometimes known as pegylated doxorubicin hydrochloride (PLDH). In liposomal doxorubicin the molecules of the drug are enclosed (encapsulated) in a fatty coating known as liposome. The liposome allows the doxorubicin to remain in the body for longer so that a greater amount of chemotherapy is delivered to the cancer cells, while having fewer side effects on healthy tissue.
Everything I’ve seen seems to indicate that it is more easily tolerated by most (but obviously not all), though they stress that being tolerated more easily does not equal being more effective necessarily.
Hope that that does mean though that you don’t have side effects that are too bad and that it does actually improve your quality of life by shrinking those tumours in the neck and shoulder.
Glad the Marsden man came up with a plan!
Kay x
Hi Jane
Very glad to hear that the man at the Marsden was able to suggest something. Hoping it has a postive effects on your tumours.
I think pegylated doxorubicin has had a couple of mentions in posts on this site…have you searched on here?
X
S
Hi Jane,
Dosn’t the pain just wear you down!
I have been in a hell of a lot of pain and think I would do anything to get a rest bite from it.
I am not familiar with this drug but I would imagine when in pain it sounds tempting…
I hope I don’t sound to flakey when I say…
‘have you really got anything to loose by trying’…
And if I do then I take it back:)
I am now in a similar situation to yourself as although I have bone and lung mets the problems one are in the neck and chest area.
Whatever you decided I will watching with fingers crossed that you might get a bit of breathing space.
Best wishes
Tess.X
Tess
Yes the pain does just wear a girl down. You’re right: I probably don’t have anything to lose. Just have to wait now for Marsden man to contact my onc.
On the pain front…hospice lot are now switching me from amytryptiline (spelling) to gabapentin. Have been in pain for weeks now…as I’ve said before it really doesn’t give me much faith in hospice’s skill at dealing with pain later on…Right now I can’t move anywhere without getting pain. Walking it hurts really badly and I can’t drive cause can’t lift my left hand onto the steering wheel. (Fortunately I don’t like driving so don’t drive much.) Thank goodness watching Wimbledon only involves sitting on the sofa, but rather a limited life…
Hope you too can get some pain relief which works.
And Debs…so sorry you are feeling sick and tired.
Jane x
Hi Jane,
i have just come back from seeing my oncologist and was going to quiz you about pain relief but you’ve answered my questions.
The pain your in and not driving I am feeling exactly the same so know how bad it is.
Wishing you a possitive answer and very soon,
Best wishes Tess
Hi Tess
My pain is still bad. Its not quite as intense but still difficult to walk so I feel pretty housebound. I hate driving so am somewhat relieved that I shouldn’t try to.
Like you I feel really driven down.
Jane xx
Hi Jane,
I havn’t heard of the chemo’s you mention - but I am glad that at least your onc may have come up with a potential solution for the pain you are experiencing. I have certainly found that gaberpentin together with other meds work for me.
Although I have been on the same meds for about two years now, (in fact I reduced my oxycontin a couple of months ago) I have found my pain is now much better. Simple things helped with this, namely the purchase of a very comfortable chair (ekornes) as well as comfortable bed and very comfortable shoes. I have nerve pain in my leg - this requires me to walk very slowly and often not very far (again this often depends upon my footwear), the pain in my spine means that I cannot carry any handbag however small, as my main activities prior to bc were badminton and walking this has been very life limiting for me, but at least I am not now in the constant pain now that you guys describe and that I once had. I am sure you all have already put into place those simple solutions, but it had not really even occurred to me, but then we know I am gormless don’t we.
Debs - what a rotton time you are having, if there is any right in this world at all it’s gotta get better for you soon hasn’t it.
My very best wishes to you all x
My mattress cost £1000! And I never wear anything but very sensible shoes. I have not been near an uncomfortable shoe for 40 odd years. My footwear is not of Debs’ vintage…but classic dyke wear if not quite Doc Martins these days. (more like Ecco, Wolky or Josef Seibal.) Maybe this should be mentioned in gormless shopping.
Jane
I have gone the same route too Jane - give me dykes footwear any day LOL! One of the first treats I made for myself was a really good chair that is MINE. No one else dares sit in it unless I am not there. I got a retentive memory foam mattress initially, but then last year I got an electric bed which has helped a lot with the reflux probs too, as well as being able to find a comfortable position at night. As you know I also went for a small motability scooter, so that at least I can get out and about with the family if they want to do anything.
Are you noticing any different yet with the gabapentin.
Dawn
xx
They are gradually pushing gabapentin up…but not working so far. I feel cheery cause I’m back on another course of steroids (fat face hello again).
Insurrance company playing up on paying for caelyx…they wouldn’t speak to my onc’s secretary today! If its refused I’ll make a bit of a fuss, but not a gigantic one…hey hum
Jane
Hi Jane,
Just to say my friend is on Caelyx for ovarian cancer and she is having no side effects at all. Hope this helps
love Jackiexxx
Thanks Jackie…hope I am the same as your friend re side effects.
Insurance company have approved in principle…just hope my oncologist writes a good letter of support.
Fancy looking forward to chemotherapy!
Jane x
Hi Jane,
Great about the insurance company paying up.
I really hope you get some benifits from the chemo.
I still remember how refreshing it was to read that you had stopped treatment for a while, this I am sure will put in a strong position both mentally and physically for the next chapter.
I am still on Amatript but the gabapentin was mentioned to me as another option so I am interesed to see how it works.
I have a bit of a love hate relationship with my steriods!!!
As for a new mattress I had to buy a new one last month as while we were on holiday one of cats decided to pee on my bed!!!
Sensible shoes I used to call…
‘corrective footwear’!!!
now the fancy ones are my resturant shoes.
Best wishes
Tess.x
Tess,
re gabapentin. I read somewhere that the newer drug pregabalin is better - it is gabapentin with a difference and is also known as lyrica. Like you I was on amitriptyline but thought it would be good after a long time on it to ask if I could try pregabalin instead. My onc was quite happy for me to do this.
Dawn
xx
Insurance company have authorised caelyx. Start next Thursday. Watch this 20% space.
Jane
Hi Dawn,
Yes your right about the pregabalin… I was getting muddled with the names…(which is esy to do at the moment).
So far the Ama seems to be helping but its always good to know there is somehing else…
just helps to give a bit of control back.!!
Regards
Tess
Hi Jane,
I am watching the 20%!!!
Thinking of you…and having a little chuckle to myself as I too am keen to get moving treatment.
Wishing you all the best,
Tess.x
Hi Jane
Glad you are feeling comfortable with the Onc and your decisions, at the end of the day we have to do what is right in our minds and hearts and this is cleary they way forward for you as things change to much with this disease don’t they. I really really hope it works well and will keep my fingers crossed that this drug gives you some help with the pain you are in by reducing the b**** things.
Hugs
Nikki