Really Down: Morning Ladies. Some of you are... - My Ovacome

My Ovacome

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Really Down

1916 profile image
1916
33 Replies

Morning Ladies.

Some of you are aware that are following me , I had a change in my scan in October they started me on Taxol but that doesn't seem to be working asites after 3 cycles keeps having to be drained about 7liters at a time. It is also swelling my ankles and my legs feel stiff. I saw the oncologist Tue he said we will do one more cycle if still the same will stop. I am platinum resistant which doesn't help. He said my protein level is low and I'm not well enough for trials, I feel deverstated and they have given up on me , I can't live each day with this feeling of doom I've always took it all 4th line of chemo since 2017. Sorry to be so negative but every body else seems the same.

Sending Love

Annxx

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33 Replies
Manchesterlady profile image
Manchesterlady

So sorry to hear your news , it’s hard to stay positive when your feeling rotten. I don’t know which hospital your being treated at , but have you considered getting another opinion? I’m sure more experienced ladies will be along soon . Thinking of you .

Sheila xx

1916 profile image
1916 in reply toManchesterlady

Thank you Sheila .

For replying love Ann xx

Katmal-UK profile image
Katmal-UK

Hi Ann I'm really sorry you are feeling so down - totally no need to apologise at all - it's perfectly understandable and I think any of the ladies here would feel the same way. I'd definitely be asking for a second opinion and to help with feelings some counselling if this hasn't already been offered. It really does help. Sending you a really big hug. Kathy xx

1916 profile image
1916 in reply toKatmal-UK

Hi kathy.

Thank you so much I don't know.what I would do without you all. It gives me more hope to see are all fighting together.

Love Liz xx

Lyndy profile image
Lyndy

Sending you a virtual hug ❤️.... chemo is so hard and to have little result from it must be depressing but I agree with Kathy that a second opinion might be helpful xx

1916 profile image
1916 in reply toLyndy

Thank you Lyndy.

I just think they have all given up on me , after Tuesday appointment .

But I haven't yet.

Love to you

Ann xx

delia2 profile image
delia2

I’m so sorry for what you’re going through. I agree with others about getting a second opinion at a major cancer hospital. I wish you the best.

1916 profile image
1916 in reply todelia2

Many thanks delia.

Love

Ann xx

Caroles1 profile image
Caroles1

Second opinion, fresh stance on it, it will bring your mood up.

Totally agree with the ladies, don’t give up, it is very easy to get down, don’t let it get to you,

Love,

Carole xx

1916 profile image
1916 in reply toCaroles1

Thanks Carol

Much appreciated.

Love Ann xx

shortfriends profile image
shortfriends

sorry you are having such a tough time. Don't apologise we have all been there, and recovered!! Go for a second opinion and lets hope the brighter weather will be here soon it always helps. If you are near a cancer centre eg Maggies call in there and talk to others or call the ovacom helpline or Macmillan on, it can really belp to talk to others. Hang on in there, we are all here for you. Lots of love and hugs Pat xx

1916 profile image
1916 in reply toshortfriends

Hi Pat.

Thank you for your kind words , it's nice to know your all here for me.

Lots of love

Liz.xx

LittleSan profile image
LittleSan

Hi Ann,

As I've written recently, I've had lots of chemo that hadn't held the beast at bay over the last 18 months. My team have made it clear that it's a bit of a long shot but I started the Modified Rotterdam Regime last week and my ascites are definitely going down. Even my abdominal and leg odema is reducing (it was affecting my mobility hugely, horrible isn't it?) . So everything crossed it's doing something. I was feeling pretty poorly from a partial bowel blockage so they kept me as an inpatient to build me up. I was hb, protein, phosphate and magnesium deficient so they gave me high dose steroids, 2 bags of blood and mineral infusions to build me up for chemo. I've just had dose 2 and apart from needing magnesium, my bloods were fine. Hope this gives you some encouragement.

Please consider a second opinion but if not, I wish you, strength, tranquility and acceptance. Much love to you Ann. 💐 Sandra xx

Btte profile image
Btte in reply toLittleSan

Hi Sandra I was so pleased to read your post and your wise words to Ann and so glad you are feeling a little better with some of the symptoms deminishing. I don't reply much these days as I stopped treatment and trying hard to make the most of the rest of my life, and finding it quite a struggle. Celebrated my 76th birthday on the 19 th Jan. So in my way I am still fighting with the help of my lovely husband friends & family. Ann I have just realised I have replayed on your post, so to you Ann keep going and try for that 2nd opinion at maybe Manchester Christie Hospital or London Royal Marsdon I also got help when I was very down and over welmed by my ailments. I got counselling from Macmillan and then I did a mindfulness course and so glad I did it's keeping me going. My love and hugs to you all Love Bridie

1916 profile image
1916 in reply toBtte

Thank you so much xx

LittleSan profile image
LittleSan in reply toBtte

Ah thanks Bridie, glad you're managing some quality of life. I think of you often and with affection. Sandra xx

1916 profile image
1916

Hi Sandra .

Thank you for those kind words, are you on a trial? My consultant said I'm not well enough to be accepted! I have taken all my treatment on the chin and definitely not giving up yet.

Lots of love and good luck

Ann xx

LittleSan profile image
LittleSan in reply to1916

No, I'm not on a trial. It's an old regime that's not used much these days. I was on a trial that seemed pretty successful but the maintenance phase did nothing and my cancer galloped rapidly once chemo stopped in December. Xx

Maxjor profile image
Maxjor

I think sometimes we project what the docs are feeling. If you tell them you want to fight--that you need to know what they will do next for a patient like you, maybe it will give you a different feeling about how they are reacting. But to add to the other responses, I went for a 2nd opinion when I just wanted another point of view for what was next when I began to relapse and the input I got was quite different than what I got at my institution. There is always something they can try! Wishing you luck finding that 2nd opinion and getting the input you need. Sending hugs, Judy

1916 profile image
1916

Hi Judy.

Thank you , I said is there anything else he responded with no. We need to see the palliative nurses really I think that's it with him.

I certainly feel like the fight begins now , I can't just give up.

Love Ann xx

Rlenesue profile image
Rlenesue

Hi ann, so sorry to hear this news. Have they checked your red blood cell count?it might have something to do with your legs. He said your protein levels are low, but is he referring to ca125? Bottom line, is the taxol working? If not, there must be other meds you can go on. I'm praying for you..<hugs>

Rlenesue

1916 profile image
1916 in reply toRlenesue

Morning .

He thinks the protine is low because of being drained and the not eating, he does a full blood count but really I know he thinks it's the cancer hence not a positive outcome.

Sending love

Ann xx

Rlenesue profile image
Rlenesue in reply to1916

Dont give up, there are always new trials coming out <hugs>

1916 profile image
1916 in reply toRlenesue

Thank you

Trouble is the consultant said I wouldn't be accepted as I'm not well enough.

Love Ann xx

Rlenesue profile image
Rlenesue in reply to1916

Perhaps a second opinion is warranted as the other women have suggested. And your health should improve as time goes by to allow you into another treatment. Keep fighting.

1916 profile image
1916 in reply toRlenesue

Thank you xx

mupash profile image
mupash

HI-

I'M GLAD TO HEAR THAT YOU'RE NOT GIVING UP. THERE'S SO MUCH OUT THERE. A SECOND OPINION MIGHT BE A GREAT IDEA. I'M IN THE US AND I BELIEVE THAT MD ANDERSON AND SLOAN KETTERING WILL REVIEW YOUR SCANS AND RECORDS AND MAKE RECOMMENDATIONS. I DON'T THINK LOCATION WOULD EFFECT THIS. MD ANDERSON AND SLOAN KETTERING ARE BOTH FANTASTIC PLACES FOR CANCER TREATMENT.

BEST OF LUCK TO YOU!

LEE

1916 profile image
1916 in reply tomupash

Many thanks xx

Cynthia18 profile image
Cynthia18

I am so sorry you are going though this.i feel 7 liters at a time is to much at one time.i could not go past 10 days i was so uncomfortable with 3 liters in me.

1916 profile image
1916 in reply toCynthia18

Hi Cynthia .

Trouble is my tummy never goes down, there are pockets that they can't drain as I have a colostomy as well. My imagination is all over the place at the moment.

Love

Ann xx

AlaNtO profile image
AlaNtO

It can be hard. Taxols do have a reputation for building up resistance in the cancer cell itself where the bad cells produce a protein that fights the Taxol. In the USA they are using NSAIDs to fight this. Please never give up you are worth every ounce of effort to stay with us and you are doing this for your family. There are many cancer drugs, its finding the right one. Some do have lousy side effects granted but they do not last forever. Hang in there.

1916 profile image
1916 in reply toAlaNtO

Thank you for your reply.

Trouble is I'm resistant to platinum as well, everything is against me this time. I usually cope well on treatments and carry on as normal, this time it's to hard.

Love

Ann xx

AlaNtO profile image
AlaNtO

I could not ever recaqll all the cancer drugs there are so many. Sure there are the well known ones, there are also new ones being released and tested all the time. Hope springs eternal so make your oncologist work for his living or see a new one.

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