Newly diagnosed with ‘rare’ cancer and conflicting emotions

Hi Jocelyn,

I know what you mean about staying positive when you don't know how long you have left. I have had seven rounds of chemo and major surgery to get rid of what they could see. Mine is stage 3 serious. I am now on a treatment called avastin which can give you more time. I am taking it as it comes. I have a holiday with my daughter and grandchildren in 3 weeks and have just booked a cruise for October. I don't know how long I have got but I am going to make the most of it. I hope the chemo isn't too gruelling for you and once you have had your treatment make the most of evedrything. Healing thoughts to you.

Hi Toyo. So glad to hear your husband has had his operation and is recovering well. He has certainly been through the mill and hopefully is feeling more positive now. thinking of you both ans sending good wishes.

Hi Elizabeth 

Did you have many side effects with the chemo and avastin?  Do you still have infusions for Avastin or is it tablet form ?  So nice to hear from someone in same horrible situation but you are right we have to grab life while we can and I like your attitude towards it .  We can’t let cancer win entirely .  Your holiday with your family is a lovely way to make memories.  I’ve got my first grandchild due soon so I want to try and grab as much time as possible .  Not ready to go yet despite what they say 

Hi Jocelyn.  I am surprised that your oncologist told you Avastin is no longer available on NHS, I am currently on a twelve month course of Bevacizumab/Avastin on NHS I would query it again. You have to have it before you finish chemotherapy so if your chemo has finished that could be why you can't have it. Good luck.

Hi Jocelyn. I have just seen your reply sorry. The Avastin is still an infusion every three weeks but you don't get the bad side effects that you do with chemo, I have had three so far and just felt a little sickly in the mornings. Once the first two have been done it is only a half hour infusion so no sitting there all day. I too am not ready to give in to this and will make as much enjoyment as I can, while I can, at the moment apart from my legs being weak I feel fine, my hair is growing back white but what the hell at least is is growing again. Take care.

hi Elizabeth 

he was adamant that it was not available on NHS and has put me on a six week course of irinitocan  and Avastin and it’s really expensive. I have just googled it and irinitocan is a type of chemo.  He said Avastin was taken off the market for NHS as too expensive

Does anyone else on here know if it’s still available on NHS ? 

Hi Plum1360

Just wondering how you're getting on with your treatment?

I was recently diagnosed (2 weeks ago) with peritoneal cancer after being diagnosed last year with a rare womb cancer... adenocarcinoma. I had a radical hysterectomy and 6 months of chemotherapy.  

I was doing well up until now. I believe mine is secondary but I've seen on this site, quite rare and not a lot of information on here.

I'm trying to stay positive but it is difficult. Hope you're managing to stay positive.

Helen 

Hi Nan7 thanks for asking. They had to give me a break! 8 sessions of Capiri had given me severe periferal neuralgia.  My fingers and feet did not work. I am 2 months into 3 months off. The PN is still giving me problems. It may never go away. CT scan on 24th and see how my tumours are !!! Then Capox.which make my hair fall out. Not so bad for a bloke though.

Keep strong. Optimism is a boon.

Sorry  to hear about that. Hope you get back on track and the medication helps.

Hi ElizabethB

Sorry it's taken me so long to respond.  It has been a real roller coaster.  The operation was 14 hours long with the team literally looking and feeling every organ and then filling the peritoneal cavity with this cryotherapy treatment. The next day I was able to see him in intensive care where he stayed for three days.  Then they closed the hospital down due to a Covid peak.  They wanted to send him home after 10 days but he produced pus on his lower lung and diaphragm.  Apparently, this is normal with this kind of operation. Finally he spent a month in hospital.  Now we are home and the battle about eating begins.  I have spoken to the oncology nurse who is looking for a psychologist, in August a rare thing. The nutritionist has visited and has told me to take care of me too. He has a temporary stoma but right now is his own worst enemy.  We have been told they got all the cancer out, but on 8 August we will be given the results of the biopsy. Fingers crossed!!