Update on return of PPC

Hi EAH 

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

I'm sorry to read that your cancer has returned and I wish you all the best with your upcoming treatment.

((hugs))

Thank you. I think it is possibly because there are fery few people diagnosed with PPC.

Hi EAH

I am sorry to hear that you have had a recurrence of your peritoneal cancer. 

My cancer was endometrial but I had the same chemotherapy treatment and also used the cold cap. 

I hope that the chemo goes ok for you and that the cold cap is also successful. Good luck for Tuesday. I know for myself, once the first one was done, it did feel a bit easier. 

Jane

Thank you. Last time I had the cold cap I loved it because it was summer and I always have a hot head and it kept me cool! Hoping I  feel the same way about it this time. I didn’t suffer any if the initial reactions last time! The nurses couldn’t believe I liked it!

I am so sorry to read your post, so tough for you after 16 months in remission especially when I suspect you were feeling you were doing well, how are things going for you? there is only a small number of us with Primary Peritoneal cancer and it is difficult to talk about and take on board, I was feeling positive when diagnosed 2 years ago and have had surgery and a tumour removed and completed the gruelling Chemotherapy and a short course of Avastin and now I am a few months 'in remission' with just 3 monthly check ups, but the fact that it is more than likely to return has totally thrown me overboard completely more than the initial shock of diagnosis, although I knew from the start total recovery rate was unlikely I must have pushed it to the back of my mind, now treatment has ended it is on my mind daily. 

Jan D 

Thank you for your reply. I had been expecting a return because since they told me I was in remission my CA125 had been going up every 3 months when I was having my checkups. Also I had abdominal pain all the time but I was told they couldn’t feel anything and nothing was showing on the CT scans! I have now had 2 cycles of chemo. I was not at all well after the first one and on the Sunday, following chemo on the Tuesday, I ended up in A & E on a drip for 6 hours to rehydrate! I already had an appointment with the oncologist on the Tuesday, thank goodness. and he said they would reduce the chemo by 20%. I had the 2nd one 2 weeks ago and I was a lot better but still had nausea for 10 days and very painful joints and muscles for about 5 days and terrible indigestion for about 10 days as well. I didn’t suffer indigestion the first time! I contacted the 24 hour helpline and spoke to someone who said they would speak to a doctor and ring me back. Wasn’t particularly helpful, just said I was on quite strong anti sickness tablets and to keep taking my Omeprazole (have been on them for reflux since before cancer diagnosis) and do as I had done and take Gaviscon as well when required! When I was in A & E they also gave me a CT scan because I was in a lot of pain. Unfortunately they thought the results showed a new area of disease. That was confirmed when I saw the oncologist on the Tuesday and it is a 3mm tumour in the peritoneum adjacent to the transverse colon anteriorly. He said the chemo would have been attacking this as well. Next chemo cycle on 29 July so fingers crossed that the side effects will not be as bad as last time. Still liking the cold cap!

JELB It is easy to say, but do try not to overthink things, and get on with enjoying everything that you can. During my remission we managed to fit in 2 holidays we had had to cancel after my initial diagnosis. Another cancelled holiday was rebooked for July but it has had to be cancelled again! We had also booked a week in Turkey for this year but that gas also had to be cancelled  but hope we might be able to go next year. Keep looking forward to things and try not to think about the possibility of recurrence. Life is there to be lived to the fullest and that is what we should all be trying to do. ️ 

Thank you so much your reply has helped me no end, I agree I must concentrate on each day and not dwell,  you have had a really rough time of it, chemo is a challenge in itself, unlike you I decided to just lose my hair and haven't really minded wearing scarfs and headgear, it was quite exciting to mess with scarfs colours etc but that was ages ago and my hair has grown  back just the same as  before with all its annoying kinks and curls but everyone has admired it. I had similar symptoms to you before they discovered my tumour which was on top of my colon and stomach, my C125 like yours went up and up and up before they finally admitted they had missed the tumour the first time round, I had it removed in April 2023 and then chemo followed, I had a wonderful surgeon who managed to leave me intact and without the need of bag etc. the last scan showed me in remission but the Atavastin that followed upset my kidneys so after 5 infusions they stopped it and I am 'on my own' and trying to think positively, you are right I need to get some me time booked and enjoy life, I am usually very positive but it all seemed to hit me over the last couple of days, the neuropathy has been a nuisance but it has got much easier than before, unfortunately my husband had a stroke and then developed lower body Parkinson's so looking out for him has been a challenge too. please keep in touch as you are the first person I have met who has PPC we are a rare breed. x

We are in deed a rare breed! You are the only person I have heard of who has been diagnosed with PPC recently. There are 2 others whose posts I have read who were diagnosed many years ago. I think they are in the living with PPC forum. They are quite an inspiration if you can find them. I’m sorry you have neuropathy, I have so far escaped that. It is difficult looking after someone else when you yourself are having to go through this journey.  My husband developed vertigo over easter and 5 days later Bell’s palsy. He is still suffering and I still have to tape his eye closed at night and put a dressing over it. His legs for some reason, that the doctors can’t fathom out so far, is that his legs wouldn’t operate properly and he is still having to use 2 walking sticks outside the house. He has seen 2 physios who have given him balance exercises for vertigo but his balance is still not there. He has a telephone appointment with a GP this coming week and he is going to ask about seeing a neuropathist. Due to this and the Bell’s palsy affecting his eye badly he isn’t driving so I have been doing it all for his and my own hospital appointments. Next Sunday he is supposed to be having two basal cell carcinomas removed in hospital but with the doctors proposed strike we don’t know if it will go ahead. I also have to go to a different hospital that day for my blood tests! I'm sure you have a lot of hospital visits due to your husband’s conditions too but it all keeps us going doesn’t it. I will try to keep you updated on my treatment. I know that after my 6 chemos I will be on tablets to target the cancer but I don’t know yet what that will be. Please keep in touch and let me know how you andyour husband are doing. ️

It seems we  are both managing sick husbands as well as trying to keep ourselves afloat, you like me must be a tough cookie! ... my husband Nick was managing on sticks in 2023 but had a stroke the day I had my operation; that was April 24 not 23! my brain fog hasn't lifted yet,  that seems to have exacerbated his condition and he ended up being diagnosed with lower body Parkinson's. I think husbands and relatives suffer a lot of stress worrying about us, I can't complain because Nick has a carer morning and evening to help him and at last we have hospital bed and equipment to help him, our bungalow has become a nursing home with all sorts of stands aids and trolly's, he has fallen a few times and that has led to him being eligible for home care provided by community nursing and GP, ironically he is receiving more care and attention than me, we laugh about it.  I hope your husband gets properly assessed because it sounds as if he needs fast tracking, they should be giving him hospital transport as you shouldn't be doing it while you are coping with chemo, surely your doctor can do your blood tests instead of making you drive to hospital, the trouble is we just tend to get on with it. 

I was looking back at the symptoms you described, indigestion and abdominal pain, I struggled with that before my diagnosis and operation but not had too much trouble since then, the cemo did affect me and I refused to take the anti sickness and the steroids because they made me feel terrible, I got the oncologist to reduce the chemo meds and that really helped,  I have had a total omentectomy to remove a 6.5cm lesion in omentum that was encroaching on the wall of the transverse colon and total debulking following by I6 cycles of Carboplatin/taxol and Avastin in June 24m I am only telling you this as I think reading your blog you seem to have has similar, then in February of this year they put me on Avastin but that has upset my kidneys... I will be thinking of you on the 29th July, I hope your husband gets to have his procedure done without any problems.

Jan x

Unfortunately the procedure my husband should have had today was cancelled due to the doctors’ strike! They said he will probably get an appointment in a couple of weeks. I won’t be holding my breath! He had his telephone appointment with the GP and she wants to see him now. First appointment she could give him was 12 August, as she is on holiday next week, and not at the building we normally see our GPs at but a couple of miles away in another practice they run. If my husband doesn’t ask questions I will!  

You mentioned having blood tests done at the GP practice - can’t do that as it has to be done at the hospital. If you have to have a test on a Saturday or Sunday you go to a place next door to where I have chemo. If your test can be done during the week you go to another hospital, which isn’t the one my husband should have been at today! All these places are anything between 20 and over 30 minutes drive away depending on traffic and then add on the time it takes to find a parking place which can add on another 20 or more minutes. I had my blood test this morning, they were running 10 minutes late, so fingers crossed they are ok and I will have my 3rd cycle on Tuesday.

Hope you are doing ok.

Liz x ️