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Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Posted: Thu Mar 27, 2014 3:08 pm
by southernkiwi
Hi, chiming in on the cute baby photo! Gwen, maybe you could add a photo to each new page, so we get a dose of joy every time we scroll down. Or anyone else's uplifting photos - pets, gardens, whatever makes it all worthwhile. Cheers, Carolyn

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Posted: Thu Mar 27, 2014 7:13 pm
by tchan8888
Rough week. With the last scan news from a week before .... Fast forward to this week .... Our beloved Gracie (Yorkshire terrier) has pancreatitis and had to spend two days in the vet hospital .... really rough sitting there in the emergency room of the vet hospital .... so emotional with others bringing their dogs and cats who have traumatic injuries .... Reminds me of what I am going through .... Blessedly, Gracie is home today and we are watching her. With what I (and all of us) already have to deal with, it is hard to deal with the other stresses in life. That is one of the hardest challenges of this journey .... to keep sane ....

Blessings,

Tom

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Posted: Thu Mar 27, 2014 8:11 pm
by pollo65
Gwen, please put the picture of the princess up again. She made me smile e ery morning, she was better than coffee at waking me up and putting me in a good mood. Btw she looks like you, same great (mischievous) smile.
Pollo 65

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Posted: Thu Mar 27, 2014 8:20 pm
by jeanette57
Gwen and others

I do wash my face and try to keep the pollen out, but the dog refused to help. So next on my list (about 3 yrs now) is EVIAN NATURAL MINERAL WATER BRUMISATEUR--my secret weapon on dry eyes and clean pollen free face. I mist my face and my eyes. It is soft and cool and helps take the junk that glues my eyes shut out!

My mom thought she had a mild heart attack, but today the blood work and stress test said no. I think the caregivers have it harder. I am going to try to wean my mom off duty of my care. She is crazy protective and demanding but at 89.5 yrs old she needs a break. It has been every week since 2012. It is hard on me but harder for her.

I have 13 days free, yahoo. :D

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Posted: Fri Mar 28, 2014 9:15 am
by Cb75
I'm starting chemo again on Tuesday of next week. I'm scared of the unknown and am having a hard time wrapping my head around the reality that I will be "on chemo for life". I will be on folfiri and avasten. Any tips on what to expect? On any tips on dealing with this? Any diet tips, ect. Anything to help reduce chemo resistance? I already use various supplements and will try fasting before and the day of chemo.

Carmen

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Posted: Fri Mar 28, 2014 12:58 pm
by jeanette57
Carmens tips

1- http://www.cookforyourlife.org COOKING FOR CANCER WEBSITE (/recipes/thai-noodle-stir-fry?utm_source=Weekly+newsletter+March+3-7&utm_campaign=Weekly+Newsletter&utm_medium=email) I made this thai noodles last night. Yummmy. Costco has the fat soba noodles and I used them.

2- music store has cheap white cotton gloves - hands need cream - lots of it! Liquid Nails for cracks and sores from hand and foot -

3) dill pickle juice if you can not keep the medications down. Now I DO NOT KNOW YOUR FUSSION schedule but mine is over 5 hours with pre meds, magnesium and then 2 chemo's, so fasting would kill me. So eat light meals - on website they do some great soups. I have tried the misco and pho soups and they are good, but I need more calories and 70 grams of protein when on treatment or it eats my muscles.... I am doing protein bars and some shakes.

4- remember that little cho cho train that said "I think I can" going back to chemo is HARD - but take a second as you wake up and focus on why you are doing this. Gwen has pictures of her grand daughter, I have my gratitude list, others have something that helps them get up and fight this NASTY fight. It is harder and harder but cancer is not going to rob me of my spirit. Some days I grieve for my old self then I remember God has kept his blessing true and I have no pain - so I kept going. :D

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Posted: Fri Mar 28, 2014 3:39 pm
by Guinevere
Here's the newest one of the Princess

Image

Her daddy had bought that 5 foot teddy bear right before she was born and she loves it.

Still sick today with allergies. I think it wants to go to my chest but I'm fighting against that!

Folfiri - Hand/foot can get pretty bad so moisturize, moisturize, moisturize and take vitamin B6. If you do that, be careful of veggies with folic acid in them such as spinach and other dark greens. One of my chemo nurses told me that. I have more of a problem with constipation because they have to give me atropine to ward of severe abdominal cramps. You may not have this problem during your infusion. They give me Aloxi for nausea and 4% steroids down from 10 the first year and a half on chemo. I take a carafe of hot tea with me and my husband goes and gets me cookies from the coffee bar - about 4. I slowly nibble on those and I'm good to go. I take my Kindle now but, before I had that, I would work logic puzzles to try to keep my mind sharp. I have extra socks in my chemo bag. All those fluids going in can make you very cold. They have warmed blankets there to cuddle up in.

As far as coming to terms with chemo for life, it can be hard if you try looking down the road. However, if you keep it as something you have to do next week, then it's not so daunting.

Hope this helps ~
Gwen

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Posted: Fri Mar 28, 2014 5:01 pm
by MrsOssie
Hi everyone,

I haven't logged in for a while but wanted to check in. On March 25th was my one year anniversary of being NED (no evidence of disease). Doc assures me that the rest of the chemo and surgeries were just mopping things up. All scans since then have been clear and next one is April 9th. Feeling a bit nervous because I've been tired lately but hoping it's all good. Recent blood work was all clear.

I know I should be doing cartwheels around the place because I've reached this milestone but I seem to be in a bit of a funk. Maybe a delayed reaction to the rough year and a half that I've had. Struggling with weight gain post-chemo (despite exercising lots I just can't seem to shift this 10lbs), weird bowel movements (which are slowly improving since ileo reversal in Sept 2013) and the fact that everyone and their dog seems to be pregnant (and my lovely bro just had a baby that is simply adorable) and I'm going through menopause and facing the real prospect that I may never have children.

I am grateful to be here and refusing to let myself wallow or give in to bitterness. I don't want to be that person that is a misery to be around. I want to rejoice with my friends and family as they rejoice but am struggling with thinking of what I've lost (not just a chunk of colon).

There. Breathe. Rant over. Thanks for listening.

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Posted: Fri Mar 28, 2014 7:04 pm
by jeanette57
hum
no children - adopt- there are so many kids that want homes. If you want to use some's egg and hubby sperm then rent a womb (around 10,000) . so many options available. Note: read in England they give women free storage for eggs if their female parts are removed for what ever reason so they can have bio-kids.
Being a mom is a state of mind, love is all that is super important, food etc of course! :?

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Posted: Fri Mar 28, 2014 7:12 pm
by jeanette57
FYI- IS THIS CRAZY

Baby Powder Lawsuits Filed for Ovarian Cancer - Attorneys Handling Talcum Powder Cancer Lawsuits Offer No-Cost, No-Obligation Baby Powder Ovarian Cancer Case Review --Johnson & Johnson :

great now powder and lung cancer - just make the world stop! :(

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Posted: Fri Mar 28, 2014 10:08 pm
by MrsOssie
jeanette57 wrote:hum
no children - adopt- there are so many kids that want homes. If you want to use some's egg and hubby sperm then rent a womb (around 10,000) . so many options available. Note: read in England they give women free storage for eggs if their female parts are removed for what ever reason so they can have bio-kids.
Being a mom is a state of mind, love is all that is super important, food etc of course! :?



FYI - maybe you typed in a hurry but your answer appeared to treat lightly something that is hugely traumatic for a young person living through camcer and its after effects. Sudden Menopause and infertility are heartbreaking. I'm not saying they are any worse than the long list of side effects from cancer but I am saying they should be given due respect.

whether you are able or unable to have bio children, adoption is a worthwhile thing to consider. However, many people don't know that post-cancer you are at the bottom of the list for many agencies (local or international adoption). Most require you to be about 5 years in the clear before they'll consider you. Therefore, even though we are keen to adopt, it just isn't possible right now or at all.

Even if adoption were an option, I think that all of us still need the space to grieve for hopes dashed, fears realised and bodies that may be "healed" but still scarred and broken. I'm new to posting and maybe i stumbled on to the wrong board here but I hope that this can be a forum where we stage IV people can express frustrations etc., including those scary thoughts that others may not fully understand.

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Posted: Sat Mar 29, 2014 8:26 am
by Bev G
Stage IV brothers and sisters,

I had an elevated CEA a couple of months ago (6.9, up from 4.something in September) and my new onc at Dartmouth said we'd just wait 6 months to repeat it. I felt a bit uncomfortable with that, as did several of you, so I told them I wanted it repeated next week and am doing so, with fingers crossed. Given what's up with Steve, I don't have time for my own cancer bullshit right now. :roll:

Here's the latest on him (copied from my Facebook) for anyone following his story:

Today begins the next round of trying to get Steve's stem cells mobilized for transplant. Went to the hospital early today where he got his first huge dose of Neupogen (the drug that is supposed to make his marrow crank out stem cells, though it didn't last time) and tonight, and every morning and night for the next several days, I'll be giving him three injections of the stuff. On Monday morning they are going to check his stem cell count. If it's over 10 (still quite low) I will take him back to the hospital for a drug called Mobilez (or something like that) and then we will go in at the crack of dawn Tuesday, Wednesday and almost certainly Thursday morning for 8-10 hour days of plasma apheresis. It's something like a dialysis machine that will extract the stem cells from his circulation, taking all his blood out, removing the stem cells, then putting it back it. It can play havoc with his platelets, which have been a pain in the butt for many months, and that's a concern. Bit of a risk for a ruptured spleen or brain bleed. I would plan on taking a lot of xanax next week, but I'll have to drive a lot. If they're able to extract enough stem cells for transplant, they'll freeze them for later transplant. Steve will get a one week break as apparently this procedure (especially when it has to be done for three days) is completely exhausting) then will be admitted to the hospital for ~5-6 days for another round of chemo. Recovery from that will take a month, then he'll get one more round, I guess, then try for the transplant. If I'm doing the math correctly, I guess it will be mid-June or so by then. He'll be in the hospital for at least a month for the transplant, and then pretty much in bed recovering for 6 more months after that. It will be a very long many months coming up. Prayers are welcome.

xoxo Praying for all of you.

Ms Ossie, it is heartbreaking what you are going through. There is no legitimate way to minimize all that cancer steals from us on this kidnapping. You are so entitled to grieve for what you had always expected as viable options for your future. I am so grateful to have survived this long with stage IV cancer, and I am particularly reluctant to complain here about after-effects of my treatment, because so many of my beloveds are experiencing so much worse, all day, every day. That doesn't change the reality for me, just how likely I am to complain about it. I was thinking about this yesterday while grappling with how I am going to deal with all of Steve's upcoming needs. I am severely debilitated from the effects of chemo/neuropathy. They want me to have all sorts of invasive testing done which I just don't have the time to do now. They want me to have a 90 minute initial appointment re:chemo brain, which I just don't have the time to do now, they want me in PT, which I just don't have the time to do now. Wah-wah-wah. But, unlike so many of our loved ones here, I still get up every morning.

I am so sorry that you are grieving the loss of having your own children. However, you don't know the end of your story yet. Amazing and wonderful thing can and do happen. I hope and pray they will happen for you...and for all of us.

Hugs to you.

Bev

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Posted: Sat Mar 29, 2014 12:18 pm
by annalexandria
MrsOssie wrote:Hi everyone,

I haven't logged in for a while but wanted to check in. On March 25th was my one year anniversary of being NED (no evidence of disease). Doc assures me that the rest of the chemo and surgeries were just mopping things up. All scans since then have been clear and next one is April 9th. Feeling a bit nervous because I've been tired lately but hoping it's all good. Recent blood work was all clear.

I know I should be doing cartwheels around the place because I've reached this milestone but I seem to be in a bit of a funk. Maybe a delayed reaction to the rough year and a half that I've had. Struggling with weight gain post-chemo (despite exercising lots I just can't seem to shift this 10lbs), weird bowel movements (which are slowly improving since ileo reversal in Sept 2013) and the fact that everyone and their dog seems to be pregnant (and my lovely bro just had a baby that is simply adorable) and I'm going through menopause and facing the real prospect that I may never have children.

I am grateful to be here and refusing to let myself wallow or give in to bitterness. I don't want to be that person that is a misery to be around. I want to rejoice with my friends and family as they rejoice but am struggling with thinking of what I've lost (not just a chunk of colon).

There. Breathe. Rant over. Thanks for listening.


Sending some hugs your way, MrsOssie. What you are feeling is totally normal...gratitude for survival can't help but be darkened by the terrible toll cancer takes on our lives. Give yourself time to mourn what you've lost. Especially as a young person, you've had to pay a great price for staying alive, and I know how hard it is to watch other people your age going on with their lives seemingly unscathed. Heck, I have those feelings, and I'm a middle-aged mom who hasn't been impacted half as much as you have.
Sending strength and hopes for the future~AA

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Posted: Sat Mar 29, 2014 4:25 pm
by MrsOssie
Thank you for being so understanding and for the virtual hugs. Flicking through the posts here, I can see the rough road that so many of us are on. It's just good to have somewhere to vent in those low moments and to be an encouragement to others.

I feel much better today. Not so tired and I am slowly getting used to my new normal of chemo brain, painful neuropathy and stomach issues. These things I have actually coped with. For me, it's been the fertility-related stuff that has been hardest. But, as one of the previous posters said, I still believe in miracles and don't know what the future holds.

Funny story re chemo brain: I was at brunch this morning with friends discussing the new Noah movie and special effects. I was raving about the "MSG" that I had heard was in the movie. My friends are staring at me and one of the girls gently asks me "Do You mean the "CGI" and not "MSG" unless the Noah movie is code for Chinese food?" Ah, my silly, chemo-pickled mind that keeps confusing words and phrases.

Have a good weekend everyone.

Xx

Re: mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

Posted: Sat Mar 29, 2014 7:02 pm
by dianne052506
Mrs.Ossie,
Sudden menopause is hard to deal with for any woman; I can't imagine adding all those side effects to the trauma of having cancer and the grief you must feel over not having children. Cancer is a b-tch, and surviving is tough on all fronts. I wish I had words of wisdom to offer, but, today, all I can offer is more virtual hugs, with a big dose of prayer.
Hang in there,
Dianne