Losing Hope

Hi everyone well tomorrow I am getting discharged from mayo here I Rochester Minnesota. We came. Last Friday for an appointment and during the night I got sick with throwing up and stomach pain. Make a long story short they found that I had an infection in my intestinal fluid. So I was also waiting for the results of the clinical trial to see if I was a match. Well I am not......

So more good news so it has been 4 weeks since my chemo ended and they told me if I was going to try for the trial you have to wait, so in the meantime my cancer is in my peritoneal having free range. Also I have a Picc line for nutrition because I had gotten so sick with throwing up bile that I got emaciated. I am. Doing a lot better now but am afraid they won't treat me. Does anyone know the protocol for this? I am so depressed and afraid

Mary

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  • I am so sorry I cannot help.

    Take care x

  • I see you are currently in US. Do you have American/US Insurance? If so, they will treat you. I don't know anything about the UK health insurance system so I cannot speak for that. I have 3C with peritoneal carcinomatosis. My oncologist treated me with chemo for 4 months before radical hysterectomy, then IP chemo, then dose dense. I am currently NED. Don't give up! Tesla

  • Hi Tesla, what is dose dense?

    Naimish

  • Naimish, Dose dense was 18 weeks of carbo/taxol in a row. There's a particular dosage and order which they use, but it's weekly and it's extremely powerful. Even though the weekly doses are "smaller", ultimately you're getting more chemo. I have many, many side effects from all the chemo I've had. Some are permanent, others maybe not. Considering that I had less than two weeks to live (if untreated) when diagnosed 3C with ascites, I am grateful to be here now and enjoying myself!!!! My doctor has bought me TIME. Statistically, we all know this disease reoccurs. In a portion of the population, this disease may NOT reoccur. I have HOPE for many years to come. Tesla

  • Thank you Tesla for the quick response and information. My wife too was diagnosed with high grade 3C PPC with mild ascites. Immediately debulked with hipec (Sugarbaker) followed by six rounds of carobplatin/paclitaxel , IV as well as IP. Now under complete remission and praying it does not recur. The main adverse effect for her has been acute neuropathy in her legs and especially feet.

    Naimish

  • Naimish, I've lost my hearing and will be getting hearing aids. Now have cataracts but they can be removed. Have neuropathy in feet for which I take L-glutamine. Cognition greatly slowed, serious balance problems, Vision has deteriorated, taste buds not working to well, almost no sense of smell and short term memory loss. I can live easily with all of it. I am here now and enjoying my family. Tesla

  • I don't know what to say Tesla! All.that I can offer is prayers. Cheers to your health and may all these maladies subside soon, over time

    Naimish

  • Yes we live in Iowa bc/bs

  • mrist1, you have good insurance. You will be treated. They will get you stable and get rid of those nasty infections. You will get better. This is just a small side trip from your goal. You can carry on. Your body is depleted which messes up your hormones. You may be short on electrolytes which would make any of us down and crying. Your nutritional needs must be met in order for you to be able to even think straight!!!! You will get stronger and treatment will continue! Tesla

  • Thank you

  • Dear Mary

    Don't give up hope. They have not said they will not treat you. Maybe they can't start you on anything until the infection clears up. You must ask more questions . I wish you all the best.

    XXX

  • Hi Mary .. I'm really sorry you feel poorly at the moment. I was wondering if you've been given antibiotics? Love and hugs . Xxx

  • Yes

  • Yes tons I have a yeast infection in my stomach

  • Dear Mary. So sad for you at this time. Surely your oncologist can offer some other treatment for you now, as opposed to waiting for the trial?

    Please don't give up hope, keep on fighting until you get the treatment to arrest this b disease

    Much love Jackie O xx

  • Hang in there my love - you are not alone ☺

  • so sorry to read this . have a rant and ok to feel scared. then pick yourself up and ask loads of questions be a pest until you feel they have answered as much as possible. Dee

  • Sending you hugs. I've no experience in the US, but here our NHS offers pallative care onnce Chemo is not possible. I'm advanced OC and my current chemo is last hope. If it doesn't work, I'm told the pallative care will help make me comfortable which in the end is the best we can hope for. I'm not able to do clinical trials as not well enough so I do know the place you are in.

    I hope this info helps you?

    Take care xxx

  • Mary I'm so sorry to hear that you're suffering and afraid, such an awful place to be in. I hope that you have been able to take a deep breath and realise that there is always hope. I've not been in your situation however I would think that the first thing is to treat your infection then to look at other treatment options.

    Have you posted on the Inspire site? That's mainly in USA and Canada however there are ladies from all over the world on that site and I would expect that there will be someone who has been where you are now and can help you and share.

    I send you prayers and thoughts and hope you can soon feel there IS hope and more treatment ahead. Please don't give up.

    Lots of love

    Clare xx

  • Yes thank you everyone. I am being treated with antibiotics. I am on TPN and they are putting the medicine in there. Just feel down. I have a good support system but want to be better like yesterday. I have a good medical team. Just found out that I also have a yeast infection inside my stomach too. So they are adding a new antibiotic now. Am still waiting to get discharged.

  • Dear Mary, I don't know about your situation or what to do, but I do hope you are with someone who can comfort you give you love. Make every possible enquiry and get all the help you can. I hope that this suffering will pass and you can carry on being treated. Will all my love and positivity. Alison

  • I don't know the protocol, Mary......but, I can send you good wishes and lots of prayers. JudyV

  • Mary, there is hope. Are you able to drink or eat? I'm recommending a powerful juice to help your immune system . Get a good juicer, put fresh and organic ginger, turmeric, kale, chard, spinach , broccoli , a 1/2 or whole avocado and water it down with coconut water. Supplements to take pycnogenol, milk thistle, cats claw, vitamin D3, blue green algae, black raspberry and a probiotic. Buy on Amazon apricot kernels and Beta glucan( buy at betterwayheath. Http/bit.ly/beta glucan sale. Have you heard of the cottage cheese and flaxseed oil diet but dr. Budwig....read about it.....its done wonders for cancer patients. I was diagnoised with cancer 8 yrs ago and late stage 3c, it started with ovarian then colon then liver cancer. I got tired of being sick...so I told my oncologist that I was done with chemo! I took things into my own hands and did everything I wrote you snd have been cancer free 3 years so far. On YouTube, you can get a lot of info. Follow chrisbeatcancer, dr. Nicholas Gonzalez . Beating-cancer gently.com Wish you the best.

  • Thank you for this information

  • HI Mary, I hope the antibiotics are beginning to work and then you will begin to come around. The line will help you get nourishment and protein and hopefully you can then move to a liquid diet and begin to eat a little again. Sending you kind thoughts

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