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I know this is a rare cancer but would love to hear from anyone that is having treatment and how you are doing.
I sometimes feel like I’m the only one, as most of the posts are a few years old.
Hi Acker and a very warm welcome to the online community
I'm not a member of this group but I noticed that you were new here and asking for people to get in touch with you.
You say that most of the posts are a few years old but if you will scroll down the page you'll find lots of new posts in the last 12 months. You could reply to some of these and that way you'll get chatting with others who have peritoneal cancer.
Wishing you all the best
"Never regret a day in your life, good days give you happiness, bad days give you experience"
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Thank you for your lovely reply, yes I have had another look at the posts and there are some more recent ones, I will make contact with them
I too have peritoneal cancer and like you have felt quite lonely at times. Mine was diagnosed last spring and since then have had chemo and a de bulking operation. I am currently on avastin and the cancer seems under control. So I am making the most of this time but do have problems with fatigue and muscle aching. Hopefully you too will have success with treatments
Lovely to hear from you, it seems you are further on the treatment path than me. I started on an 18 week course of carboplatin, Paclitaxel and avastin every 3 week and Paclitaxel every week in between, it was tough going, some very dark times but I got through it, I am now on Avastin 3 weekly till early next year.
Just had a call yesterday from oncologist to say my pet scan results were good and everything was shrinking.
i can’t tell you how relieved I am.
how long have you been on Avastin ? Did you have any chemos before that ? What stage have they given you ? Has it metastasised ?
oh sorry for all the personal questions but you are the first person I have spoken to with this type of cancer, all I have to go on is goggle and that’s a scary place.
i too am suffering with fatigue and aching muscles. My bloods have been so bad, both white and red cells, my second transfusion a couple of weeks ago didn't seem to help much either.
I would love to hear more about how your treatment is going it does give me hope,
forgot to mention I am on the icon B8 clinical trial
Thanks for getting back to me
One of the things you realise very quickly is that no 2 treatments are the same and how differently people respond to chemo etc. When I started on chemo last year I was due to have it weekly but quickly my blood results were so poor I only managed it every 3 weeks. Tried all sorts of things to improve neutrophil scores etc but without anysuccess. Also had some avastin then.
Finished chemo in June so I could have a break before a debulking operation at the end of July. I had already had my reproductive bits out 25 years ago as I hit an early menopause. Funnily enough also had ovaries out just to stop something like this happening although ovarian cancer seems to follow another path. The operation was a success in that they removed pretty well all of the cancer. However some small patches were in dangerous positions so had to be left. Anyway back on chemo in the autumn and this spring. At present on avastin only on a three week cycle until October. Not sure what happens then.
my oncologist doesn’t believe in transfusions and gcsf injections. as he says you no sooner have them done and the cancer kills any good they do.
I am doing okay but find it difficult to get any decent level of fitness. I have had my PICC line removed so I can swim. This helps me mentally and physically.
What else can I tell you or anyone else looking at this forum?
Hi. Was interested in you having Avastin and wondering what happened next. I have also been advised that after my last remaining chemo sessions x 2 , i'll have a maintenance programme of Avastin over 18 cycles to 'buy you a few more months'...….not sure if the 18 cycles are the 'few more months' or if they come on top of.....LOL.
Have you suffered any side effects? Is it doing its job, do you think? If you refuse Avastin, is there an alternative or nothing at all. Am wondering if different hospitals offer other treatment paths.
Mine was all diagnosed in November last year with Chemo starting in January this year. I'll be honest and say am getting 'bored' with it all now...the follow up appointments and sitting for a long time in waiting areas and having short times with Oncologist. .I keep being told it is containable not curable, but I am still going strong, responding well to chemo and healing well after being debulked four weeks ago...although if anyone else tells me 'you look really well'.....when I am feeling less than well....I will not be held responsible for my actions!!
Can't wait to get permission to get back into the water and start doing more than a slow walk around the block.
Initially I was told the cancer was widespread, diffuse and progressive and treatment would be palliative. Then referred to the hospice so things were pretty scary. However once I had seen the oncologist I felt more positive. He talked about the treatment giving me a period of “remission” only he didn’t use that word. Can’t remember exactly. My understanding is that after the avastin I should get a break from treatment. Subsequent treatments would give me shorter good times. The key seems to be remaining positive and that is the side I show to friends and family and save the wobbles for when I am on my own..
getting rid of the picc line has been a positive move. Yes I hate the injections but like the freedom- like the swimming.
we are going away for 2 and half weeks touring Scotland tomorrow. Longest time away since this started!!
I don’t know of alternatives to avastin. It is certainly better than chemo but does give me aches and pains in my legs. Small price to pay.
has your local hospice helped you?. I have had 6 sessions if alternative therapies like massage.they also got me attendance allowance and a disabled car badge. They ring me at intervals to see how I am doing.
so keep up with a good face and remember your friends will be hoping signs of good health are positive for you because they are scared too.
I have just been diagnosed with primary peritoneal cancer. I am 21 years old and I was wondering if there was anyone who was anyone who was around my age. Apparently it is extremely rare for me to have it at my age but I just wanted to know if there was anyone out there. I just feel so alone and scared. Or could someone help me understand what to expect. I got diagnosed on the 2nd of July and I’m waiting to go to Leeds to talk about what the plan is but that could be another week, and I really want to know what to expect.
Thank you you in advance
i am afraid I am somewhat older than you. It’s now 18 months since I got the diagnosis and am still living well with cancer. ( l prefer this expression to fighting cancer.” It has been a rocky road at times but the good days are great.
my advice is to accept all the help you can get even if you don’t feel it is necessary. The love and support from everyone has been great.
I live in the north west so don’t know if the treatment is the same in Leeds. I had fluid drained off my tummy, chemo, a debunking operation and more chemo and am now on a drug called avastin. What I do know is that cancer treatments seem to be developing so quickly and life is pretty good.
good luck when you see the oncologist and let us know how you get on. Happy to support at any time.
Thank you so much. I go to Leeds next Friday and they said they will do the operation first. That’s all I know at the moment. Does the avastin work? Are you near remission? I hope you are okay. It’s so great having someone to talk to. So thank you.
Love Hannah xx
I too have Primary peritoneal cancer, I was diagnosed in January 2019
I opted for the icon B8 clinical trial which consists of 9 rounds of weekly chemo a debunk op and then 9 more rounds of weekly chemo then 3 weekly Avastin until next March 2020.
Because my cancer had spread to my lymph nodes in my chest they did not do the debunking operation, oncologist said it was not going to gain me very much in the way of time and the trauma of the operation would not be worth it, she also said they would not rule it out completely in the future.
i have my 3 rd Avastin next week and touch wood all is going well.
There has been some side effects on the Avastin but I’m not so sure they aren’t age related, I’m getting a lot of pain in my shoulder, previously had cortisone injection which cleared it up a few years ago but it’s back and it’s quite painful the pain seem to go down my shoulder blade and also across my collar bone, I also have arthritis in some of my fingers, which funnily enough seemed to disappear when I was on the chemo but again is back and somewhat more painful. After sitting for a while I become very stiff and have to get up slowly until I’ve limbered up again. Other than that no other real side effects so I reckon it a small price to pay.
On diagnosis my CA 125 was 1600 2 weeks ago it was down to 19 so it seems to be keeping the cancer in check, what happens after March I do not know but oncologist said we have lots of other chemo to try !!! So I’m hoping for a spell of remission and a break from this madness lol
You are Extremely young to have this and I think lucky that they have found it as you hear so many stories of “you are too young for it to be serious “ and sending people of with indigestion cures, delaying diagnosis.
You have youth and fitness on your side so stay positive, although I’m only 61 I feel 91 some days but trying to rebuild my fitness level up gradually.
i am also originally from Yorkshire but now in West Sussex but visit the county fairly frequently to see my son and grandchildren.
Please feel free to message anytime, good times as well as not so good times.
Hope all is going well for you with the treatment
Very sorry about the diagnosis but one thing I was told when I was first diagnosed was the younger you are the better the outcome. The doctor said he had a younger patient who is still around after 17 years. So there is hope for you and that is a very good thing.
I was diagnosed with peritoneal cancer august 19. I had three courses of carbo and paxi chemo and then had the debulk operation six weeks ago, they removed 80%of the cancer which was contained in my abdomen. Recovering very well from the operation. Continued with my original chemos every three weeks, second after surgery on Friday when they are adding Avastin. The avastin will be eighteen courses at three week intervals. I am in the Leeds area and the care I have had from all areas has been great. No problem with time at appointments. I am not as far down the line as most on this forum, so wondered how long it takes before I can hope for a more ‘normal’ life. I would like to go on short breaks in between chemo.
I am at the end of chemo now, and am looking to go back to work beginning March. Feeling well.
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