2nd opinion in Marsden

[Kakabud]

Any info or experience on 2nd opinions in Marsden. My mum is stage 4b no longer being offered treatment. We live in northern Ireland. Only diagnosed in jan. Feel like we are giving up to soon😓😓she is 59. Any info appreciated

[BeeWild]

Hi kakabud so sorry you find yourself in this situation with your mum x

I’ve not needed a second opinion as I’m happy with my team at The Christie in Manchester but Royal Marsden is an excellent choice too!

Has your mum had any surgery and chemo yet?? It sounds very odd that they aren’t offering anything so soon after diagnosis as she can’t possibly have completed initial treatment yet can she it generally takes around 6 months?

Hope you get some answers from the Marsden and this forum is a great place for you all to get support

Let us know how you get on, when is your appointment?

[Mlowery in reply to BeeWild]

Hi

Sorry to hear about your mum. I have just asked for a second opinion with the Marsden. I am happy with my oncologist in the north of a England but he can only offer me the treatment offered through the hospitals protocol. I wanted to check others options for myself as I believe you have to be your own advocate and fight your case.if I am not successful for 2nd surgery at least I will have tried

[chrissapam in reply to Mlowery]

if its any help the Marsden told me you often need to be your own advocate! They certainly will know of all the options....love Chris xxx

[Mlowery in reply to chrissapam]

Thank you Chris that’s nice to send such a positive comment. Let’s hope I am lucky. Maureen best wishes to you .

[Kakabud in reply to BeeWild]

Thanks for reply. She was offered 3 chemos. It hasn't worked as they said she is platinum resistant and the cancer has now increased. They said there is nothing more to offer and they have give her months😔😔we are finding this so hard as only diagnosed in January

[BeeWild in reply to Kakabud]

There are other chemos to try and other targeted therapies too! Get your mum to either the Christie or the Marsden as soon as you can! Your mum has the right to seek other opinions and options!

I can only advise regarding Christie but it’s a fantastic place and like a well oiled machine all the staff are amazing and they don’t give up!

I’m classed as platinum resistant too as I have a recurrence 4 months from my first chemo which was Carboplatin and Taxol but I’m now being given just Taxol weekly and have been put on a trial to add in a targeted drug as well.

Please please seek to get over here soon and see what specialist cancer centres can offer her xxx

Sending hugs

Bev xx

[Kakabud in reply to BeeWild]

Thanks Bev for your reply. Here in Northern Ireland they just made us believe as she was platnum resistant there was nothing else they could do and trials would not be available either! I have been on to the Marsden and I am getting all mammys notes. Wishing you all the best with your journey too x

[BeeWild in reply to Kakabud]

Keep us posted with how you get on x

Got everything crossed you can get some help for your mammy xx

Always here for you when you need some support, advice, a giggle or to just rant and rage!

Take care of all of you

Bev x

[Biscuitqueen in reply to BeeWild]

Hi Beverly, my mum seems to be in a similar situation to you. May I know what other targeted drug you're taking and if it's a trial? Thanks

[BeeWild in reply to Biscuitqueen]

Hi I will be getting a drug called cediranib to take orally and it’s part of a trial called CEBOC but it’s only being run at Christie at present. If you look at my previous posts there is a link to the trial xx

[Jessica-DianeB in reply to BeeWild]

Hi, me again.

My oncologist is referring me to the Christie regarding CEBOC. Is the trial running from the Christie in Manchester? I was under the impression it was only running at the trials Center in Cardiff?

Hope you are getting on ok xxx

[BeeWild in reply to Jessica-DianeB]

It’s only being run at the Christie as far as I’m aware but the research is from Cardiff I have my treatment at Christie every Monday but only started round 1 this Monday and will probably have the cediranib from week 4 x

Where are you based Jessica?

[Jessica-DianeB in reply to BeeWild]

I’m in the midlands. Commute to Christie is closer than the Royal Marsden where I’m also expiring trial options.

I’m really pleased to hear the actual treatment is taking place at the Christie as traveling to Cardiff was the only draw back.

Albeit I’ve had my disease confirmed as stable today after progressing during 2nd line single caeylx I’m still facing 3rd line weekly pacliataxol at some point so being able to explore my options is a blessing right now xx

[BeeWild in reply to Jessica-DianeB]

Good luck with everything and let me know if you’re joining me on CEBOC we can be chemo buddies as trial clinic is always Monday morning and treatment afterwards 😁

Seeing as I’m having 18 chemos my mission set by friends and family is to get a chemo asbo by having giggles and fun on the unit! My friend this week is providing deely boppers to put over my cold cap 😂

Seriously though fingers crossed you get on the trial xx

Bev

[monalbaki in reply to Kakabud]

There are so many other options like immune and targeted therapy and PARP inhibitors. I strongly urge you to seek a second opinion.

[CharlotteSo_UK]

Hi. I'm so sorry to hear that you are in this situation. My Mum was diagnosed with 3c low grade in 2010 and we were lucky enough that our local oncology team referred Mum to the Marsden as they were not sure on how to treat her. I would say push for your second opinion - you have every right to - BeeWild is right in that you have to be your own advocate.

I'm sorry I can't be helpful in telling you ways of how you get that second opinion but the Marsden are great, I hear so are the Christie and also a lady prof in one of the London hospitals. Maybe ask the Ovacome support team how to go about getting that second opinion?

I know you must be feeling so anxious, angry and frustrated right now but please look after yourself also. I wish you and your Mum all the best xx

[MissEd]

Hi Kakabud,

My mum had just had a second opinion/trials appointment last week at the royal. She valued it emensely and they suggested the next time she has to have chemo it should be double agent not single like the local hospital suggested.

It is in my opinion 100% worth going x

[January-2016-UK]

What about seeking a second opinion from the Christie in Manchester, which is also top cancer hospital? I’m thinking that Manchester is probably easier to get to from Belfast. There’s a lady on here, Julie40 who is also from Northern Ireland and flies into Manchester for her treatment.

All the best whatever yoo decide. A second opinion is a good decision.

[111173]

I contacted the trials team at The Marsden. Anyone is entitled to do this and all you wil need is a letter of referral fro your oncologist. There are lots of treatment available if you are prepared to do your trials research. I found them very helpful and attentive and from that initial visit I am now on a trial at Oxford. You could be offered treatments not yet a ailable on NHS and those that NICE have not yet approved because of cost.

Lynne

[monalbaki]

Go for it my dear ASAP. Many patients have responded beautifully in spite of the failure of first and second lines of treatment. Get going quickly pls. Keep us posted so that we can brainstorm together

[keeponkeepingon]

The Royal Marsden told me that there is always something they can do, it's a first class Hospital.

[Jessica-DianeB]

Hi,

I’d agree with the other ladies, a 2nd opinion is always worth exploring. I have stage 4b diagnosed sept 2016. It has been a rollercoaster when it comes to options, as I too am platinum resistant.

Please ask her local oncologist about single agent Caeylx it’s not a platinum drug, it has around a 20% chance of working for platinum resistant patients.

I feel we do have to be our own advocates to a degree, unfortunately progressive and recurrent disease is difficult to treat, however not everyone is text book and not all centres have the same level of knowledge and expertise.

You will get valuable advice and support here. Wishing your mum the best possible outcome xxx