Update on Mum from Mali - new hope

[Mali]

Hi everyone.

History - Mum had been told there was no more anybody could do for her. She has recurrence of colorectal liver mets after a resection. Her penultimate consultant had said that a CAT scan would tell us how much time she had left.

Last Friday - Mum is very ill indeed and getting weaker. She made it to the appointment with her consultant and I joined her and Dad. (I'd gone into overdrive researching the world on the net - thanks to that I know you guys exist and you've given me lots of practical information.) I went armed with my research to the consultant. Mum was so weak they took her into a room, along with registrar and couple of nurses. (Dad and I were in tears.)

It happened that another consultant (who is part of the multidisciplinary team along with the consultant who had told her there was nothing anyone could do.) came into the room. It was an unplanned meeting. We ended up not seeing the first consultant but spending time with this one.

We were stunned to hear that he believes she is not in terminal stages yet. He said even if she chose to do nothing further he thinks she has another 12 months left at least. But - and this the most important bit - he said that he could understand the previous doctor's concern re. infection setting in and hence no chemo availability) but he thinks she should batter the door down of the oncologist and demand chemo. This means he thinks she could benefit from chemo. We've found one person who thinks there is a possibility of helping Mum. I want to shout it from the hightest mountain...

He listened to all my research questions, and I threw the possibility of a second opinion at him, to which he said that it was a possible thing to do. I also mentioned the option of coming to Sloan Kettering, but told that perhaps money was part of Sloan's motivation with international patients, in not so many words.

I also questioned him about TroVax. He said he wasn't too familiar with it and also quite wary of opting for a trial medication when there are chemos out there that are already established at working.

(Although, that being said, i've been reading your posts on the side effect of neuropathy with Oxilaplatin. That is a worry, but we shall take it one step at a time.)

Anyhow, to summarise, he believes that we have to remain positive, he instilled so much confidence that we had a weight lifted from our shoulders. It mjust goes to show, if you search for, or persist or just accidentally come across the right person, it can mean the difference between a death sentence or a fight for life, and a more positive outlook altogether.

It did us all so much good, that the Sunday afterwards, Mum got up, got dressed and we all went out to lunch in a restaurant. That - is unheard of. For the most part she is bed ridden.

Having said that, she has had a terrible start to the week and seems to react very badly, (with violent vomiting) to every antibiotic under the sun. She is taking them for infection at the moment. But i'm hoping that once she stops she will feel a tad stronger again.

To summarise - we have been given something to hope for. We believe we now have more time in which to help Mum. Our next step is to batter down that oncologist's door and demand the chemo therapy that may help Mum.

With love to you all, you are all in my thoughts.

Mali.

[Guest]

Mali,

Good for you and Praise the Lord for your persistance!!! I am so glad to hear of your good news. I wouldn't worry at all about the Neuropathy with the Oxilaplatin. Even though it is a problem, it is something you can live with. I have been off Chemo since August now and I still have the numbies. It isn't near as bad now at all and I am sure it will go away in time. I just look at it as I was soooooooo fortunate to have been able to take ALL the treatments and at full strength that I can live with a little numbness if the treatments worked and I am cured. I have had my yearly colonoscopy now and it was clear along with a clear chest X-ray and my CT Scans after the treatments were clear as well. My CEA count has been great at 1.5 as well. That was my CEA level before I started treatments as well. I am just so very thankful that I was treated with the Fulfox treatment with the Oxilaplatin.

Stay proactive Mali and come here often for support and information because the people are just wonderful here!! You will continue to be in my prayers!! Now go help your mum kick this ole Colon Cancer in the butt!!!

Hugs Peg

[Mali]

Hi Peg
Thanks for your response. It's heartening when I receive replies to my posts as I can't help but feel a little more empowered if people are taking the time and trouble to write back.

I will surely visit this site often, it is a mine of information and very practical indeed.

I'm so happy that you are clear now after your treatment. I hope you continue from strength to strength.

Your comments on Oxilaplatin with Fulfox interested me. I understand that to avoid the side effects of neuropathy there is something to counteract them (and I think, but can't remember of top of my head that it is magnesium with calcium.) Could be wrong but it is written on the other posts.

Did you not have cause to take these to counteract any neuropathy? Or was it not even a consideration? I think that different people have different levels of neuropathy from Oxilaplatin. I was reading one person had cramps in her throat and chest, I think.

This will be something to be discussed with the oncologist, once we get an appointment with one.

For the moment, Mum has her CAT scan date. Next week on Wednesday.

I'll be in touch with further updates but in the meantime, thanks so much for your response, and hope to talk with you again soon.

Mali.

[Sweet Peg]

Hi Mali
I didn't know anything about the magnesium/calcium thing until my next to last treatment. I didn't find the Colon Club until over halfway through my treatments. I have been taking B6 everyday since I found out that this could help and it has helped some. I only take 100 millagrams a day though.

I also had the jaw clenching thing. After coming home from a treatment, i would take a drink or a bite of something and it would zing right through my jaw. It was like biting down on aluminum foil or something. It only lasted a bite or two then go away. It only did this on the first bite or drink of something for the firs couple days of treatments then go away. Under my face from chin to the back of my throat would feel cold and numb most of the time for a few days after the treatments as well. I would get numb lips and tongue when drinking something cold. I was lucky enough to be able to drink things with ice in them after my 5th day, that included the days that I had the treatments. Like you say, everyone is different but it is nice to hear other peoples experiences so you aren't shocked if one of them happens to you!!

Keep in touch and feel free to email me anytime you like as well.

HUGS Peg

[Goofydad]

Mali,

So glad to hear you got someone to listen to you and give some hope...and glad you mom got out of the house to celebrate!

Keep up your strong vigilance and advocacy. The hard work is up to her, but enjoy every single minute of every day...from my experience, please. Celebrate life with every sunrise.

Peace..

Glenn

[Mali]

Hello all

Thanks for your lovely comments. Goofydad, I shall fight all the way for my Mum. Sometimes, she does not have the energy to do it for herself. But when she does, I hope she'll exploit the situation as much as possible.

I've been reading the other posts on Folfox. Is Folfox the same thing as Oxilaplatin? I thought they were 2 different medications. I am concerned about any possible side effects regarding chemo. Should an oncologist agree to Mum receiving chemo, I am concerned my Mum may back away due to fear of side effects.

I'm not quite sure whether I should gently broach the subject with her in advance or wait until the oncologist sees her, after all, it's not worth jumping the gun.

The neuropathy with Oxilaplatin worries me more than some of the symptoms people suffer with Folfox (if these are indeed seperate medications.)

Well then, our battle is yet to start in earnest. As mentioned earlier, Mum has her CAT scan soon and we will be better informed after that.

In the meantime, (and I know I keep saying it) but you are all wonderful. You are so informative and it is an education coming to this sight. Most of the research I went armed with to Mum's consultation last Friday, was as a result of visiting you guys.

Bless you all and be well.

Mali

[ASTEPHENS33]

FOLFOX is 5FU, leovorcin (helps the 5FU be absorbed) and oxiplatin. I hope the best for your mom.

[Goofydad]

Mali,

My wife is on that regimen again (had it last time two years ago), and infuses Monday. Her oncologist gives her a one-day treatment, lasts about 6 hours, then she wears home a mini-infuser "baby bottle", and 70 hours later gets unhooked from THAT. Side effects actually start during the infusion; nausea, occasionally vomiting, and a real intolerance of strong smells (maybe that's just her.) The neuropathy can be bad, so she brings scarf/ mittens to treatment, and sometimes to bed. Her drinks have to be room temperature, so I have water on the porch NOT in the refridgerator and some Gator-ade (sports drink) there as well. The diarrhea can be particularly intense, your mother should know about THAT; it's an effect, not side-effect. There are other, less severe. Whether you tell her is ultimately up to you and the doctor, but I would advise so.

The chemo needs to kill all the rapidly-dividing cells in her body (like cancer cells,) but the chemo is very non-specific and kills most cells, including mucous membranes, the lining of the intestine and more worrisome, can affect the reproduction of red- and white- blood cells. That EFFECT of the medications causes the side effects. You need the sledge to kill this fly, unfortulately.

The Oxalyplatin is newer, and an anti-angiogenesis agent; it stops the production of new blood vessel growth. Tumors NEED oxygen, create new vessels and can starve surrounding tissue to feed themselves. The intent is to starve the tumor, and shrink it, perhaps relieving some of the pain and hopefully (cross your fingers) eradicate the cells. At the least it debulks (shrinks) the tumors so you get more time. My wife has been at this for 7 years now, and her goal is to see our daughter graduate in 5 years.

Let's hope for new and better, and more specific drugs soon. Just make sure your mum eats when she can, what she can tolerate, and drinks water or sports drink when able. They will give her medicine to ease the nausea, certainly.

Good luck.

Glenn

[Mali]

Thank you Glenn

When I get into work on Monday I shall print your response off and add it to my research folder.

I shall talk about this to Mum but at the moment it's not right since she hasn't even had her CAT scan. (Due Wednesday.)

As ever, thanks so much for your practical advice.

I read with interest the battle your wife is putting up. You say she last had treatments before the present one two years ago. I guess she has a recurrence. I can only imagine the pain but also the endurance and sheer force of will that she and you all must have.

I wish her and your family that she will be there to see your child graduate. And I wish her a successful fight as I wish it to us all, sufferers and families alike.

Good night and we shall talk again soon.
Mali