Mum Stage 3/4 Ovarian Cancer

[Be-Positive]

My mum was missed diagnosed for 3 months. We found out exactly 1 month ago but feels like a lifetime ago we found out. We went for our consulation with the consultant to talk her through treatment, they told us that it looked like it could be stage 4 because her upper lymph nodes on her neck showed a lump which meant it was no longer contained. Is it possible it could of spread to her upper lymph nodes but no other organs? My mum keeps being sick and can't eat normal food anymore, she is like skin and bone and in so much pain. She is due for her first chemo appointment this week but not sure what to expect. They haven't given us any indication as to if it's in any other organs, I just want to know what we are dealing with. It's been a month from diagnosis to treatment starting which I think it has allowed it time to spread from the initial scans. I know everyone is so different but would appreciate any feedback please. I am praying and hoping she responds well to the chemotherapy and we get her into remission and she can get her life back on track. It is so sad and heartbreaking watching the strongest women I know suffer like she is. Thanks for taking the time to read my post. Iv written Ike of these about 5 times but never posted. Thanks x

[sharonforce]

So sorry to hear about your mother's diagnosis. It is very hard in the time after diagnosis waiting for treatment to begin. Hopefully she will respond well to the chemotherapy.

You could ask to see the consultant again with a list of specific questions you want answered. I always go in with a list and write down the answers else I get side tracked and forget what I want to say. Do explain all the problems she as with eating etc. They should be able to help. When I had problems eating the hospital provided me with supplies of Nutrisip - a fortified food replacement drink.

Sending very best wishes to you both.

Sharon

[Be-Positive in reply to sharonforce]

Hi Sharon, we have been prescribed lots of those drinks which is great thank you. I need to get her to try and drink maybe 2-3 a day as at present she is only drinking 1 if at all. Do you have ovarian cancer if you don't mind me asking? What do they determine not well enough for chemotherapy? I am taking her to the appointment today but worried as she is so skinny, weak and being sick they could refused her treatment tomorrow? Thanks for taking the time to get back to me it's such a hard place to be right now. My mum is late 58 but generally before was in amazing health, fit, active, didn't smoke, drink etc. Xx

[sharonforce in reply to Be-Positive]

Yes I have ovarian cancer and am 54 (similar age to your mum). I was diagnosed 6 years ago and I have had several surgeries and been on and off treatments - chemo and trial drugs . During that time I have had periods where I have been very poorly (unable to get out of bed) but I also have had times when I have felt perfectly well and worked, travelled, socialised etc. Hopefully once your mother starts treatment things will improve for your mum.

best wishes

Sharon

[Be-Positive in reply to sharonforce]

Thanks Linda I appreciate you getting back to me. Mum had the chemo for the first time this Wednesday. She was ok up until early hours Friday morning, she then started to be sick and wasn't able to hold down any fluids or meds all day Friday so ended up taking her to hospital as she was in main and couldn't stop being sick. Mum is complaining of the cancer pain being worse now the chemo has been done, is this common at all or did you experience the same. I was guessing it might be where the cancer is being attacked? Hopefully after these next couple of days she will start to feel well again. It's really encouraging to hear your story. Are you now in remission? Can I ask how long you have been in remission for? What stage were you at. Sorry for the questions, don't worry if you don't feel like answering them xx

[nandeb21 in reply to Be-Positive]

My mum is now day 10 after chemo. The first few days were very scary to watch. She was very ill and couldn't keep down meds or drinks. She lost over a stone in a week. Yesterday she ate 3 meals and laughed with me all day. I think the chemo is making the pain worse. Plus you can't keep pain meds in their system. Give it time as the days go by she will get stronger.

We are making a plan now for next chemo. Taking sickness drugs before the sickness comes. Things like that. Mum said to me she thinks she can do it now she knows what she is dealing with. I hope that helps.

[linja]

Hi, yes the food replacement drinks are wonderful, they helped me greatly.

Linda

[Be-Positive in reply to linja]

Thanks Linda, I got my mum those drinks and also got one recently which was call Serious Mass from tescos this was 1250 calories a drink. I can get her to drink around half a day usually if not less. We are our first chemo consultati

[Be-Positive in reply to Be-Positive]

Consultation today. So going to go in with all my questions x

[Aemi]

So sorry your mum is so ill right now. I don't have any good advice as I was only diagnosed with OV last Oct . But I do understand how devastating it is to think about and watch your mum whilst she is ill. We all go through the feeling we could have been diagnosed sooner but the anger is wasted energy so I hope you can let it go. Thinking of your mum and you and your family and wishing her well.

Aemi x

[thesilent1]

Hi, I'm sorry your mum has to go through this. Unfortunately a lot of us on this site were misdiagnosed on this forum. I ended up being treated for IBS for 3 months prior to seeing a consultant who knew what he was looking at. I was diagnosed as stage 3b. I had 6 cycles of carbo/Taxol chemotherapy as nd bi also had surgery. I found the chemo tough going as I had some side effects from it however my chemo buddy had the same chemo and sailed through hers we with no side effects.

Some advice for your mum.

Drink lots of fluids following chemo.

Fresh pineapple takes the metallic taste you get away.

Rest when she needs to.

Have a little walk when she can.

Make sure she takes her steroids by about 1pm, otherwise her mind will be racing and she won't sleep at night.

Have some pain relief in for her just in case she gets joint pains. Avoid Codiene as this can constipate you.

Try to ensure she keeps her bowels regular. I was prescribed something for this.

A couple of sessions if chemo and she will hopefully start to feel better.

Please remember to take care of yourself too.

Ann xo

[daisies]

So sorry to read about your Mum - and can only send kind wishes to you both, and to say you will be included in a prayer tonight.

Love, Daisies

[LesleyGreengran]

I was also misdiagnosed for a few months - GP said I had a virus - so I was stage 4 (they said 3/4 but it's spread further since). I responded to chemo although I was so ill when I eventually saw an oncologist and was treated. When I was admitted I was very weak. At one point I knelt down to pick up someting I'd dropped ont he floor and couldn't get up. I had to crawl to the bedpost before I could pull myself up. Although the first chemo made me sick and I had diarrhoea I gradually got stronger - had a big op after 3 x 3 weekly cycles of carbo/taxol and then slowly got better till I was almost my old self. That was over 4 years ago. I've had one recurrence since and that's been treated too. I hope your mum's treatment goes well and she gets some strength back.

[Be-Positive in reply to LesleyGreengran]

Hi Lesley, your story is sounding very simular to my mums so far. She had her first chemo on Wednesday and had two brilliant days that day and the Thursday. Friday early hours in the morning she started being sick and upset tummy. I rang the chemo on call people last night and they said if she gets worse ring an ambulance, which I did and she has been kept in as was very dhydrated, blood pressure was low and pain was very bad from meds not staying down. Is it common for the pain in the cancer to get worse after chemo do you know? They are keeping mum in to monitor her blood pressure and try get sickness and pain under control orally. It's hard to see the light at the end of the dark tunnel at the moment. She is so fed up, weak and in pain. I can't wait for her to feel better again! Are you currently in remission or are you living with cancer? I have heard reoccurances are very common when you are at stage 4. Had yours spread to any other organs? Sorry I hope you don't mind the questions I find all the information so useful. Thanks so much for replying xxxx

[Wiganw]

Hi

It's such a difficult time for you and your mum. The thing I would say is if you do want to know things, do some research so that you are able to ask the consultants the questions you need to get the correct treatment for your mum.

I think it's important to do this at the beginning so you know what your options are. It's important to make it clear to the consultant that you do want to know about the treatment.

It's important you write down what you want to ask as I found I tended to forget things the minute I walked in the consultants office.

I found my McMillan nurse was helpful

It may be worth asking what other help is available in your area, such as support groups or an cancer centres such as maggies or other holistic centres.

Has your mum seen a dietician.

I talked things through with Ovacome before going to consultant it helped me to be more precise about what I was asking.

Sharon

[Be-Positive in reply to Wiganw]

Hi Sharon,

The dietitian has been booked in for mum to see on the 5th May now when she has her second appointment. Mum has her first chemo session on Wednesday and has not been in a very good way, we had to bring her to a&e last night and she is still here now. Do you know if it is common for the pain of the cancer to feel worse after chemo has been done? Mum has been in lots more pain where the tumor is since the chemo started. I guessed it's were the chemo is attacking it but wasn't 100% sure? Thanks for taking time to get back to me!

[caz54]

Hi,

Im sorry to hear your mum has been so poorly. I was misdiagnosed for 6 months, hence I was stage 4 when diagnosed in October 2014. I had 3 sessions of Carbo/Taxol and then a debulk and have just finished my 6th session of Chemo.

After my first dose, I was admitted to hospital with severe pain in the areas of the cancer.

Each session got easier on the pain front. I asked if the chemo was clever enough to target the exact area and was told they believed it did as many women had told of this pain. Is your mum going to have a hysterectomy? I certainly found the pains were no longer unable to manage after I had the operation. My appetite has improved and I am generally feeling much better, and am hoping to return to work in May.

Sending you both big hugs

Caz

[Be-Positive in reply to caz54]

Hi Caz,

Mum is also on carbo and taxol, she is due to have 3 cycles of that then they are doing hysterectomy then after that another 3 cycles and introducing something call avastin after the op. How long did it take you to recover from the op? We keep saying to each other once she has the op I am sure the pain will almost be none existent once she has recovered. How long after the 6 cycles do they confirm your in remission? It helps to know mum isn't the only one experiencing pain, she has said it's an indescribable pain since the chemo, hoping they can get it all under control so she can come home today, she is going crazy as been in hospital every few days since she was diagnosed! Thanks so much for replying. I wish you the best of luck with a full recovery and enjoying the normality of work again. xxx

[caz54 in reply to Be-Positive]

Hi

I have just finished my 6th cycle, and am now having Avastin for 18 sessions every 21 days. I have been told the side effects are much easier than the chemo, fingers crossed. The avastin apparently slows growth of any remaining cancer cells.

I have no idea when they tell you your in remission. i have a cat scan on the 28th and will get results three weeks later, so will hopefully know more then. It took about 6 weeks until I felt back to normal. but got easier all the time. the worse pain was from the wind and constipation! My CA125 was 3600 when first diagnosed it has now gone to 14, which is brilliant news.

I hope your Mum managed to come home today, it does get easier and your mum, Im sure will soon start to feel more like herself. I am even going away for 3 days tomorrow which is something i did not think I would be able to do 6 months ago.

Take care and please do ask any more questions. Obviously everyone is different to how they respond, but I have remained positive and I think that definitely helps.

xx

[Biscuitqueen in reply to caz54]

Wow your CA125 result is amazing!!

[Mandanicole in reply to caz54]

What stage were you diagnosed at? My mom had a ca125 of 3100