Waiting times for treatment of recurrence

[trolleydollyuk]

I've not posted for a while as there has been so much going on. Completed 3rd line treatment in March but developed cysts. Got these drained in April. Lost my job and then to top it off mom was diagnosed with breast cancer. She had a bilateral mastectomy in august and is now undergoing chemotherapy. The cysts returned and I had them drained again November. To cut a long story short I was told at the beginning of December that the cancer is back but due to christmas and new years i won't be starting chemo til the 14th. I feel lousy. I am constantly uncomfortable. I am throwing up at least twice a day and this has been going on for over two months. I will be treated with abraxane and am quite worried as I had a severe reaction to taxol. Does anybody on here have any experience with abraxane. Should treatment start sooner rather than later? I know at diagnosis the cancer was very aggressive. The waiting is driving me crazy. Could do with some support

Happy new year to everyone. May it be blessed with good health for us all

Shabila xxx

[Fernanda]

Shabila, you've been though the mill the last months, very sorry for all the situations.

I have no experience with abraxane, but my onco has offered chemo imediatly after the first signs of disease progression.

As you are having problems for the last two months, I think you may talk with your medical team to advance you chemo so you will feel better sooner.

Hugs, Fernanda

[wendydee]

Dear Shabila, what a rotten time you've had. I hope your Mum is making a good recovery. It's so difficult when we want to look after parents and have health issues that mean we have to look after ourselves first. Maybe if you ring your CNS or the oncologist's secretary, to try and get the chemo appointment brought forward, it may make things happen sooner. I hope you can get the treatment meant you need sorted out soon. I'm sure someone on here will have an answer to your question. If not, try giving Ovacome a ring on Mon 6th, I think the helpline will be working again then. It's 08453710554. All the best with getting it all sorted out.

Love Wendy xx

[Hidden]

Dee Shabila,

I am so sorry that you are having such a bad time, try not to worry too much about the delay in treatment, if it is any comfort to you on the two occasions that I have had a recurrence my oncologist tended to take his time in even acknowledging that I had a recurrence but it hasn't made any difference to the final outcome....I do think however that you should be treated for the awful symptoms you are getting perhaps you should ring your CNS and explain what a terrible time you are having they should at the very least take this into account.

Best wishes love x G x

[vipervictoria]

There's some debate about when to start treatment, but because of the symptoms you're having ideally your chemo should start ASAP. Gwyn's suggestion that you call your CNS is wise. Even if your chemo can't be brought forward, hopefully at least they can treat the nausea. It might be worth calling NHS111 today - you should be able to see a doctor out of hours or get an emergency appointment at the hospital where you are being treated.

I've read that Abraxane can get good results and is easier than standard taxol. I hope it works quickly and well for you.

I'm sorry about your mother - it must be incredibly hard to deal with your own cancer and also support her. My thoughts are with you both. Best, Vxxx

[jennybutler]

Just like me more chemo. when symptons show up ca125 risen to 225 Also have a 9cm. cist that has been bleeding for 2 months lancing its self they don't call it cancerous but it could be ,not sure they will lance it? seeing Onc. 18th Jan. interesting you are having it drained mine was pressing on the bowel causing me to go to the loo every 15mins. and less so glad when it burst and started to drain. Try not to worry easy to say I know.

love Jenny xxx

[HerThing]

Hi Shabila

What an awful time you are having. I am afraid I can't comment on the proposed treatment as I know little about it. Just wanted you to know that we're thinking of you and wishing you well for your treatment. I know it's not much of a consolation but the train of thought that Angie's oncologist seems to hold is that it makes little difference whether treatment for recurrence starts sooner or later, the efficacy is the same either way. Also, he tells us that chemo tends to work better on more aggressive forms of cancer. I do hope you get started quickly and soon feel a little better. Could your CNS speed things up a little for you?

Hugs Andy and Angie x

[Madz]

Dear Shabila just wanted to send you a big virtual hug, my onc says that there is no rush to start chemo unless you are symptomatic and vomiting like you are certainly sounds like symptoms to me, that some treatment could assist with. Even if the chemo does not start there are other things that should be done to ease your symptoms while you wait to get started. I would call your CNS or consultants secretary for a review.

Hope you feel better soon lovely lady xxxx

[trolleydollyuk]

Thank you for all your replies. I'm feeling a little better and the 14th doesn't seem a year away now. I spoke to one of the chemo nurses and this has really helped. The waiting for things to happen drives me crazy especially when i'm so uncomfortable. Don't think the healthcare professionals can comprehend what we have to go through. Onwards and upwards

[Hidden in reply to trolleydollyuk]

Hi ,

All the advice above sounds good. Contact your GP and CNS you need to have something to alleviate the symptoms until treatment begins.

I was a chemo nurse in a past life and I know now that I understood that my patients suffered and cared deeply about it but I never really understood just HOW they really felt.

Hope you get sorted soon xxxx