Ovarian/Peritoneal Cancer-and no platelets!

[Caring4mum]

Hello,

I too am new to this site and I kinda wish I'd found it sooner. Having read through some of the discussions you are all so strong and supportive to each other!

My mum was diagnosed with Peritoneal Cancer in August 2016 and I've been her full time carer since then. She has had 9 weekly chemo sessions followed by debulking surgery followed by a futher 6 weekly chemos of Taxol and Carboplatin. On Monday we go for a CT scan and the hope is all signs of cancer are gone.

It took a long time for the doctors to figure out what was wrong with my mum, she had been symptomatic for several months before the diagnosis. Finally, mum paid for herself to be seen by a colon specialist who performed a CT scan and found masses of fluid on her abdomen and lots of cancerous tumours. It was a further two weeks before a Peritoneal cancer diagnosis was confirmed and my mum had an added mysterious complication of a disappearing platelet count. We were told the likelihood was that the cancer had spread to her bone marrow and there was nothing they could do. She had only a few weeks left to live.

We decided to contact the Christie hospital in Manchester for a second opinion and thank god we did. They performed a bone marrow biopsy (the previous hospital wouldn't do one as they felt it wouldn't tell them anything they didn't already know) and found no cancer there at all!

So my mums new consultant worked closely with a haematology oncologist to support my mum through chemo and 7 months down the line we are looking at a period of possible remission And her platelets are back to normal!

My mums consultant has decided to publish a report on my mums case as it's rare to have an immuno response to cancer which caused her own immune system to attack her platelets. He's doing it in a bid to prevent other cases of misdiagnosis which would ultimately have lead to an unnecessary death.

I suppose I also want to get the story out there as it's not impossible for this to happen to someone else and all the oncologists and haematologists at our local hospital had no idea what was really going on with my mum. I'm so glad we sought a second opinion because we almost didn't.

Sorry this has been a very long post and if you've got this far Thank you for taking an interest! Who knows what will happen for my mum in the future but at the very least we have more time with her.

I wish all of you the very best on your treatment journeys and if i can be of any help to any of you it would be my pleasure.

Xxxx

[yewbarrow]

Goodness me this is wonderful to read after what you were originally told! Wishing you and your mum a wonderful future together xxx

[Caring4mum]

Thank you yewbarrow!

Don't think I've told the whole story in one go like that before! Feels good to share and almost helps put it all in perspective.

I wish you all the best too xxx

[Yoshbosh]

Thank you for sharing your mum's story, and thank goodness you got that second opinion. Wonderful to hear that she is doing so much better now.

xx

[Jessica-DianeB]

Gosh. Thank you for sharing because knowledge is everything with this disease xx

[Juliette35]

Hi just want to say that I am so glad your mum went for a second opinion, wishing your mum my best wishes and enjoy your holiday. Xx ☀️🙂

[antheamary]

How interesting. So glad your mum found the best doctors. Great news for you both.

[SarahsJourney]

Thank God you sought a second opinion!! The alternative is too scary to bear thinking about. Your poor Mum must have really gone though the mill. Great idea to share this. Have you also thought of publicising through Ovacome & Target to spread the word?

What about your local paper maybe too? You may not feel up to that at this point but I'm really happy for you & your family that your Mum is doing so well xxx

[Caring4mum in reply to SarahsJourney]

Hi Sarahsjourney

Ovacome & Target I will definitely look into that! It's been 7 months since they told my mum she only had a few weeks left to live and since we got to Christie's there has been nothing but positive news. It kinda feels like a dream! For me it does anyway but I do worry about my mum. We have become very close since all this started and all I can do is try to imagine how I would feel if it was me and do whatever I can to try to be there for her. But it wasn't me, so I only understand so much.

She is so exhausted and very down a lot of the time. Ironically she seemed so focused and positive at the beginning but maybe all the physical termoil is taking its toll.

As an outsider I'd love to hear your thoughts on this as all of you will probably understand better how mum is feeling. It's all very well me rambling on about second chances but it didn't happen to me xxx

[SarahsJourney in reply to Caring4mum]

I'm sure physically and emotionally it has taken its toll on her. It's difficult to know how she is feeling as I guess we're all different, but if she's anything like me she's probably trying to protect you from some of it. I have a 23yr old daughter and I certainly do that with her. I am glad it's me as the patient though as I imagine watching someone you love, & feeling so helpless is much harder.

Has your Mum considered counselling. She may find that really helps. There's lots of services out there that offer someone to talk to, or should I say 'listen'.

The exhaustion is hard to describe but chemo is accumulative in the body which may be why it's taking its toll on her now, plus she may have had time to start processing all she's been through. It's a bit of a whirlwind at the beginning.

I wish her all the best though, & you. It's tough too caring for someone you love who's suffering. Make sure you look after yourself too x

[January-2016-UK]

Good luck with the scan on Monday. What a good thing you went for the second opinion. Often it's not clear what the results would have been if the originally suggested treatment plan has been followed, but in your mother' case it's very obvious the original plan was wrong.

All the best!

[Cropcrop]

Wow! Well done on pushing for another consultation. It's good news so far and long may it continue. Good luck with the scan on Monday ❤xx Jane

[Donmk]

What an uplifting outcome. Well done for not just accepting the initial prognosis. I do sadly feel that the first medical team probably factored in the costs of conducting more tests, it goes to show what a little bit of assertivenesscan do sometimes.

I wish you and your Mum well for the future x

[Caring4mum in reply to Donmk]

Yes I agree with you and there have been times when I've spoken to professionals or people at the local Maggie's centre and they've kind of nodded their head in recognition as though it's not the first time they've heard something like that. As a family we've tried not to give it too much thought because it's actually a very scary one! Anytime it comes up we try to remind ourselves that it isn't the whole story. The story is right now my mum is winning! Xxx

[thesilent1]

Thank you for sharing your mum's story with us. So pleased she has got through her treatment and I hope her scan will yield successful results. Ann xx

[Lyndy]

Wow! Great that you got that second opinion but what if you hadn't???? Scary!

Thanks for sharing xx

[IrishMollyO]

Hi there

I wrote a reply to your post this morning but it somehow disappeared from my screen when my iPad rebooted itself ! I have a particular interest in Peritoneal Cancer as I have PPC. Thank God your mum has you to help her fight this disease and a system which wanted to write her off. The disappearance of platelets was a mystery but to just decide she had bone marrow cancer with no hope left, was disgraceful to say the least. It made me angry all over again when I reread your post just now. I was told very early on that PPC or OC rarely spreads to bones and I think that is the usual thinking. I have had my own battles with an oncologist who I'm beginning to think writes anyone off who has stage 3 or 4 . I will be asking for another opinion shortly . I wish your mum all the best and good luck with her future treatment . Take care

[Spencer2016]

This is very timely to read. I am currently struggling with blood counts that won't stay up. Chemo had been stopped and i'm having transfusions frequently until we have answers. I had chemo, then surgery, then two full cycles (6 weeks) of chemo again before the train ran the tracks and chemo stopped. My blood issues are yet to be diagnosed and a hematologist has been brought in. A variety of blood trsts are in progress but no answers yet. I'm not sure its platelets although they are very low. Seems more of a problem with my red blood cells. Its just extreme. Even after transfusion they won't stay up.

Any details you can share might br useful for me.

Thank you!!!

[Caring4mum in reply to Spencer2016]

Hi Spencer2016,

I'm so sorry to hear you are having problems with you blood counts. I know from my mums experience they can take a real battering during chemo. However, as my mums platelet issues started before she had chemo and they recovered once all the cancer was removed during surgery the assumption is it was some sort of immuno response to the cancer that caused her platelets to disappear completely.

As you are having more issues with red blood cell counts I don't know how much help I can be as all my energy went into researching platelets and how they behave but it might give you a starting point? I also know that according to our fantastic professor who took care of my mum that neither ovarian or Peritoneal cancer has ever in his 25 year experience spread to the bone marrow where platelets and red blood cells are made. So if they tell you it might have make sure you get a bone marrow biopsy done if you haven't already.

I also know that a platelet transfusion in someone with bone marrow cancer (or a completely healthy person) should last a couple of days before the platelets die naturally. In my mums case the platelet count would disappear within hours of receiving a transfusion so to us it was clear that something was attacking them and it wasn't that she had trouble making them. Like I said I don't know if red blood cells behave the same way but maybe it's worth asking the question?

The only other thing I can tell you is that in an unusual case like my mums we wanted to make sure we had the most experienced people and the best possible team taking care of her and making decisions about her treatment.

I wish you all the very best Spencer and I hope you will find the answers you are looking for.

Keep us posted on how you get on xxxx

[Hidden]

What a reminder of how little everyone knows about how bodies work. And what a hopeful story of a little bit more light shed somewhere. Great that your mum landed on her feet; how lucky too to have you to support her, and fingers crossed in every direction for the scan. Mentally with first diagnosis you often don't know which way you're going a lot of the time, so not at all surprising she's up and down.

Good luck.