Hi, any feed back on this treatment please, ie, results, anyone who has had this treatment, side effects, funding problems, any help i would be very grateful.


Many thanks julie

Hi Julie

I had my 3rd Y90 treatment in the middle of November. I had them at three monthly intervals. I was admitted in the afternoon the day before treatment( I was treated in Liverpool and live in South Yorks) had the treatment on the second day. The radiation is put in intravenously and takes about 25 mins. On the other arm you have a drip that flushes your kidneys out and that takes 4 hours. Isolation then for 24 hours and on the 3rd day I was scanned to check that the radiation had gone to the required areas and then was allowed home. Anti sickness meds were given to me before treatment and I was given plenty to take home with me. I had nausea for a few days and felt tired for about a week after the treatment but nothing unpleasant. I had pain two weeks after my last treatment but that only lasted about a week and was managed with co codomol.I have had my bloods done every week as my white count goes down at around 4/6 weeks. I will have a scan mid Jan to see what difference it makes. My tumour is in my pancreas but is non-functioning so i do not have the flushing but I do have diarrhoea for which i take Creon. I am lucky that I have a wonderful nurse at Liverpool that attended to my every need!!!!

I hope this is helpful but please feel free to ask further questions.

Can I also take this opportunity to wish you and everyone here a happy and peaceful new year and that 2010 brings more treatment options for us all,

Love Jackie xx

Hi Jackie
thank you for replying and a happy new year to you.I will be having my treatment done at the Royal free in London and i live in the west midlands, so quite a bit of traveling. Its good to hear from a patient view doctors are so matter of fact.Now that you have had all your treatment would you say you felt any better than before, or about the same ?. I hope your scan results in Jan are ok, i would be grateful if you would let me know how you are getting on.

Many thanks Julie

Dear Julie,

My husband has recently completed his first treatment at the Royal Marsden Hospital, Sutton Site, Surrey, under Dr. Val Lewington. He will have 2 treatments, next one in Feb. Procedure read the same as for Jackie's response. For the first few days, he was feeling ok, apart from nausea, but since then has been exceptionally tired, apart from yesterday when he was feeling much more lively. You are all so different though, what will happen to you is really unpredictable. No funding problems.

Jackie, thanks for your good wishes and hopes for new treatments to battle against this very complicated disease.

Ann

Hi again Julie

As I didn't feel ill before and I don't have the flushing etc, it's difficult to say how I felt after the treatment. The best way I can describe it is that I feel stronger and fitter than before and seem to have more energy. Also, I used to have a lot of indigestion but none at all now.
I certainly will let you know my results when I get them. By the way, I had no problem with funding.

Ann, you are so right, we are all different and we all have different responses so it is difficult to know how you will feel. At least the side effects are mild compared to some treatments for other cancers.

Speak soon

Love Jackie xx

Hi girls,

I'm waiting to go to the Marsden; anyone know how much advance warning they give you before you're in; I've been told end of Jan beg Feb, will they give me days or week warning?

maureen

Hi ,Maureen i will be having mine done at the Royal free and i have been told April but i might get appointments before, just have to wait for letter, was hoping for some notice so my husband can book time off work to come with me, just left in limbo. But i must say your dates are getting very close , do you think you should give them a ring to see.

All the best julie

Hi Maureen,

We were given a week's notice, which turned out to be 2. It would perhaps be worth giving Louise a ring but otherwise "go with the flow". My hubby was just so desperate that we were prepared to take whatever we could get, just so long as it happened in the not too distant future and were quite happy to put life on hold. In any event, like you, we could not plan trips, visits to relatives, short holidays, etc., as he usually felt too ill/tired to even think about it most of the time. I did wonder at one point how I was going to get him down to Surrey. Fortunately, we made it and were so well looked after. It was a privilege to be under the care of the marvellous Smithers Ward, not forgetting Val Lewington and her right hand lady, Louise.

As you maybe have read from previous posts, the first 4 to 5 days he felt energised (steriods?). Then a great tiredness set in. The good news is that for the last few days, he has been able to stay up ALL day and felt much better. As you can imagine, this is wonderful. I don't know how long this will last, or even if this is actually due to the treatment, as it is such a fickle disease, but we are always optimistic. His next treatment is in February (no dates yet), so as we keep saying, time will tell.

We wish you every success with your treatment. You are all so different and have different reactions but we hear and read so much that is positive about this treatment, we can all hope for improved quality of life and feel very fortunate that we are being given the opportunity to try it.

Hi Maureen,

We were given a week's notice, which turned out to be 2. It would perhaps be worth giving Louise a ring but otherwise "go with the flow". My hubby was just so desperate that we were prepared to take whatever we could get, just so long as it happened in the not too distant future and were quite happy to put life on hold. In any event, like you, we could not plan trips, visits to relatives, short holidays, etc., as he usually felt too ill/tired to even think about it most of the time. I did wonder at one point how I was going to get him down to Surrey. Fortunately, we made it and were so well looked after. It was a privilege to be under the care of the marvellous Smithers Ward, not forgetting Val Lewington and her right hand lady, Louise.

As you maybe have read from previous posts, the first 4 to 5 days he felt energised (steriods?). Then a great tiredness set in. The good news is that for the last few days, he has been able to stay up ALL day and felt much better. As you can imagine, this is wonderful. I don't know how long this will last, or even if this is actually due to the treatment, as it is such a fickle disease, but we are always optimistic. His next treatment is in February (no dates yet), so as we keep saying, time will tell.

We wish you every success with your treatment. You are all so different and have different reactions but we hear and read so much that is positive about this treatment, we can all hope for improved quality of life and feel very fortunate that we are being given the opportunity to try it.

Ann, Thank you so much for your prompt reply. It's the waiting that puts you on edge and yes the fact of putting my life on hold. But I have to book flights from Ireland so would like to do it asap. They're paid for by NHS but I just prefer to get them as cheap as poss.
I'm sure your husband is now desperate to get the next one under his belt.

Will keep posting on this forum, so will let you know how I am and hope to hear about your man.

all the best

Maureen

Hello again Maureen

First of all apologies for getting a double whammy of my spiel!! Still have n't mastered this posting lark!

I agree totally with you that it is the waiting that "puts you on edge". You would think we would be used to it as we seem to be waiting for something or another most of the time!

I look forward to hearing how you get on. Today, my hubby feels really good - this is his 9th day of feeling more like of human being, a record for him over the last 6 - 8 months. He was actually able to drive by himself and get his tyres changed at the garage. Wow, this is great for us! So, all bodes well for you and the all of you other good folk waiting for this treatment. It's nice to post something good.

Ann

Hi, Everyone, i start my y-90 treatment next wednesday 17th Feb, so have not had to wait till April after all . Will let you know how i get on.

Speak to you soon Julie

All the best Julie, I'm in begining of March; let us all know how you get on.

Maureen

Hi Everyone

Got my scan results and great news! The Y90 has shrunk the tumour in my pancreas and the ones on my liver. My neuroendocrine nurse says the team are really pleased with the response. This has given me a real boost! The only blot on the landscape is that there is a spot on my spine but my nurse is not unduly concerned- it may have been there all the time but I am to have a bone scan. Just keeping my fingers crossed that it is nothing sinister.

Ann- hope Lindsay is feeling well- is he due for more treatment?

Julie and Maurenn- really hope the treatment goes well for you. With reference to what to take in the hospital- I always take bits of my fave food and put them in the fridge and also plenty of diet coke which is my favourite soft drink as they like you to eat and especially drink to get the radiation out of your system. Also, do make sure they give you anti sickness regularly-they should do as a matter of course. My nurse gives me an anti-sickness injection before i travel home as it is quite a distance.

Do let us know how you go on

Best wishes to you and everyone

Love Jackie xxx

Jackie,
over the moon for you; was that your last y-90? Thanks also for the foodie tips, I'm getting boring as I didn't think of anything else but water to drink!!!!!

X fingers and toes over the spot but what's a spot after what you've got rid of!!!

Maureen