Caeylx after splenectomy ?

[Jessica-DianeB]

Hi Lovely forum friends. Hope you are all as well as you can be at this moment in time.

I've a question please, I'm heading for 2nd line treatment of caelyx ( due to plat resistance and not getting into clinical trial is hoped for )

But I've read that it's not recommended if you've had your spleen removed.

I'm not seeing my local oncologist until Thursday ( I was discharged back from RM London yest )

So wondering if any of you have been allowed to have it after splenectomy?

Thank you in advance, Jessica

[Yoshbosh]

Hi Jessica,

I’ve tried googling the answer, but can’t get a clear response. I think it will have to be a question for your local team. If the RM suggested/recommended it, and they know you’ve had a splenectomy, then hopefully it would be OK?

Good luck, my lovely.

Vicki x

[Jessica-DianeB in reply to Yoshbosh]

Ah bless you, thank you Vicki. Guess I will have to wait until Thursday.

Hope you are having a lovely weekend xxx

[Yoshbosh in reply to Jessica-DianeB]

Also part of the insomnia crew 🙈 The steroids wake me up at 3.30am and I can’t get back to sleep afterwards. Hopefully tonight will be better!

[January-2016-UK in reply to Yoshbosh]

I have that problem too on Weds and Thurs which does get better as the week goes on and the steroids wear off. Of course you can make things worse for yourself by setting your alarm for just before 6 am to see the conjunction of Jupiter and Mars, best seen some 40 mins before dawn. Open the curtains and see / hear rain. Rain means clouds, clouds mean no clear view of the sky. So back to bed but sleep eludes. Furthermore, it’s tomorrow morning not today!! 😡

[Jessica-DianeB in reply to January-2016-UK]

Hope you can catch up on sleep today xxx

[Jessica-DianeB in reply to Yoshbosh]

Boooooo!! Hope you did get another nap xx

[Beckyjh]

Hi. I had a splenectomy and had caelyx for a recurrence which I finished in June. I read that too and was a bit nervous but I was fine - no problems at all.

Good luck xx

Becky.

[Jessica-DianeB]

This is positive! Thank you Becky! Hope you are well xxxx

[kristinaapril]

From what I read, the only time Caelyx is not recommend is if an individual had a splenectomy due to HIV related Kaposi’s sarcoma. Reasoning is because these individuals already have a very poor immune system. I did not see anything related to splenectomy and OC.

Whenever you hear back, please let us know!

Kris x.

[Jessica-DianeB in reply to kristinaapril]

Thanks Kris!

Insomnia like me? How are you? Xxxx

[kristinaapril in reply to Jessica-DianeB]

I'm an American; so mostly just wonky time zones (though I do have insomnia haha). Doing well, though mum has oncology appointment Thursday and CT Saturday, so I'm sure my anxiety will be kicking in soon!

How are you?

x

[Emalou71]

Hi, I had Caleyx for a reoccurrence and I have no spleen. Only issue I had on Caelyx was shingles.

Xx

[January-2016-UK]

Hello Jessica

Like Kris, I can only find information stating Caelyx is not recommended following a splenectomy if an individual has Karposi’s sarcoma (usually HIV related.

Although probably not entirely relevant, dogs get a cancer called hemangiosarcoma which usually affects the spleen which is often removed. They are then treated with Doxorubicin (Caelyx is liposome-encapsulated Doxorubicin). I know this because it’s what my little dog had.

Although a different species, I’m speculating that the lack of a spleen and doxorubicin is not necessarily contra-indicated.

One thing I’d suggest you ask before finally deciding on your next treatment is, is there a possibility you might be ruling yourself out of any trials currently in the pipeline by taking a particular drug.

It’s a long wait until Thursday....

Helen

[Jessica-DianeB in reply to January-2016-UK]

Hi Helen,

Thank you for your reply.

Yes, I did discuss this at the Royal Marsden ( my 2nd opinion hospital )

Unfortunately I have no other options and although they said there are a few in the pipeline, I can't wait. So I just have to hope that another trail becomes available at the point I need 3rd line treatment.

The only thing I've not explored and I will do is the use of Parp inhibitors, I'm still waiting on BRCA results but I've read people on here have accessed them being negative and have self funded.

Hope you are well xxx

[January-2016-UK in reply to Jessica-DianeB]

I didn't mean delay treatment waiting for another trial, rather ask if there are trials perhaps coming along in the future where you need to be able to have caelyx or whatever. I know some current trials, which I'm not eligible for anyway, say you are ineligible if you have previously had weekly taxol for instance. Sorry if you did understand what I meant.

I'm well but suffering more now I've had my fourth weekly taxol. Aches and pains in legs and arms, tingling etc. My cough and cold which had more or less gone, came back with a vengeance the day after. Hoping the fifth one doesn't make things worse. Need a proper night's sleep, no coughing, no sneezing.

All the best!

[Jessica-DianeB in reply to January-2016-UK]

Ah yes, I think I knew what you meant, I did ask that. However caeylx is my only option anyway, so unfortunately I've no choice 😔

Weekly taxol sounds so tough! You are more than half way there though. Are you on a trial? Xx

[January-2016-UK in reply to Jessica-DianeB]

I think I'm supposed to have 18 infusions so some way to go yet. No, like you, my oncologist could no longer wait for a trial. I had to come off my first trial, Javelin 200 (avelumab) after six months because of progressive disease. Immediately consented for GEN-702 but ineligible as insufficient measurable disease (don't ask; it's all to do with what and how it's measured). That trial closed before I grew enough. Was tested for the folate receptor for both the MOv18 and FORWARD I, but both tests negative. OCTOPUS platinum resistant trial not an option as I have carcinosarcoma. OVTOVA not an option as I don't have a BRCA mutation. So here I am on weekly taxol, somewhat concerned as had to have a dose reduction of Taxol first time round because of peripheral neuropathy.

It doesn't seem as bad as first time round which may be because carboplatinum makes it worse or because it's a lower dose each week than once every three. Or it may because sometimes I'm taking paracetamol when the aches and pains kick in. I was frightened by the temperature business and perhaps having to go to A&E that I never took anything. More blasé now 😀

[Jessica-DianeB in reply to January-2016-UK]

Gosh, you have looked into a lot of trials. You keep a positive head on that taxol, think aches and pains are a good sign it's doing something in there!

Love and luck for the remainder, fingers crossed xx

[Hidden]

Hi Jess. I’m a nurse and have definitely come across people having Caelyx having had splenectomy. It might need keeping a slightly closer eye on you but otherwise...

Here they 💐💐💐😘xx

[Jessica-DianeB in reply to Hidden]

Thank you, smiling xxxx

[Dee345]

I had a splenectomy and have been on Caelyx for a year. I hadn't heard of any contra indications. Best wishes x

[Jessica-DianeB in reply to Dee345]

Thanks Dee xxx

[Neona57]

I have been offered caelyx and have had a splenectomy. Have been waiting for a phase one clinical trial but nothing happening and don't know what to do. Now 3 months since scan showed recurrence in liver and peritoneum-clear cell and platinum resistant.

[Jessica-DianeB in reply to Neona57]

Hi Neona, I'm sorry to hear that.

Apparently there are phase ones in the pipeline that were supposed to have started by now, it will happen, but it's a case of when!? I've been advised not to wait, to go ahead with Caeylex and hope that a new trial comes along when i next need something.

Us platinum resistant ladies seem to be very limited. Hence why I wanted to test positive for receptor so I had more options. Wasn't meant to be!

Speak with your CNS if you are worried, where are you being treated? Xx

[Howick01]

It would not harm to remind them that you have no spleen.

Hope all goes well x

[Jessica-DianeB in reply to Howick01]

I will definitely be doing that, thank you xx