Dis Breast Cancer Survivors Part IV - GAGWTA

[Pea-n-Me]

My best friend has just been diagnosed with breast cancer that has spread to her bones. She had a lumpectomy last month and they removed a very small lump (not seen on last year's mammogram) and it tested positive.

He main complaint over the past 6 months was pain in her back, arm and chest. As it turns out her bones are riddled with multiple lytic lesions.

She is seeing an oncologist in our small town, but I have not been impressed with some of the advice he has given her regarding food. He is telling her to eat high calorie foods every hour. He mentioned Haagen Daaz (sp) ice cream and other high empty calorie foods. She is severely constipated and has no appetite.

I have a few questions.

1. I would think the quality of food is of utmost importance. Correct?

2. Could someone recommend something to help with constipation.

3. I really think she needs to go to a renowned cancer center because I question the diagnosis and treatment plan. She was satisfied with things at first, but this morning she expressed concerned with the doctor and she "doesn't like" him anymore.

4. We are in North Carolina. Is Duke the best place to go? Will she need a referral?

Welcome. Io am sorry to hear about your friend.

She should absolutely be going to the best cancer center she can find!

Most literature that I am aware of advises healthy food, but the oncologist may have knowledge or reasoning that I am unaware of.

Metamucil, miralax and/or senator and cool ace should help the constipation. Lots of water, too.

 

[luvmarypoppins]

quick post. Dh and I watched illuminations with Laurie last night.

Pats mom's dh wasnt feeling well so we will try again to meet up with them.

Weird goings on here. I guess because of the gun incident at AK?

Disney security at BC exit in back and a sniffer dog checking out the friendship before we could board it at hollywood studios.

 

[Pea-n-Me]

quick post. Dh and I watched illuminations with Laurie last night.

Pats mom's dh wasnt feeling well so we will try again to meet up with them.

Weird goings on here. I guess because of the gun incident at AK?

Disney security at BC exit in back and a sniffer dog checking out the friendship before we could board it at hollywood studios.

A trash can blew up at Disneyland. I don't know if that had anything to do with it, but maybe they're just being extra cautious!

 

[Theta]

Welcome. Io am sorry to hear about your friend.

She should absolutely be going to the best cancer center she can find!

Most literature that I am aware of advises healthy food, but the oncologist may have knowledge or reasoning that I am unaware of.

Metamucil, miralax and/or senator and cool ace should help the constipation. Lots of water, too.

Thank you! Yes, she has been taing all those things. Today was a better day for her.

 

[luvmarypoppins]

just poppin in to say hi. dh wanted a break from wheelchair pushing so we swam today.

hopefully we will see laurie tonight and maybe patsmom.

tomm. we are moving to the yacht club. goodbye wonderful beach club concierge floor!

 

[Feralpeg]

just poppin in to say hi. dh wanted a break from wheelchair pushing so we swam today.

hopefully we will see laurie tonight and maybe patsmom.

tomm. we are moving to the yacht club. goodbye wonderful beach club concierge floor!

So sorry I haven't called you! I have a sinus infection and have been miserable. Keep hoping I'll shake it and be able to get together with you, but it isn't looking good. Hope you're having a great time!

 

[luvmarypoppins]

just spent some time with laurie in epcot

honestly, dh and i arent use to this heat, It really gets to you.

off to yachtsman for dinner

 

[CherylDan]

Hello ladies! Soooo quiet here lately!

LMP and Laurie, hope you are both having a great vacation! How nice that you were able to get together.

Smiley, how are you doing? Any improvements with your sleeping?

Peg, hopefully you are feeling better.....how are you tolerating the new chemo?

Great news for me today at my two month check-up.......ct scan is still not showing any change with the mets, so woohoo for that! Tumor marker numbers continue to rise, be my oncologist thinks that as long as Im not showing any symptoms and based on the ct, we will continue to just keep closely monitoring for now. It was two years ago this month that I had my last chemo......never thought back then that I'd get two years treatment free. I can't begin to say how lucky I feel!

DH and I decided last week to jump into the real estate market and buy a condo that is a short sale. We put in an offer last Friday, still waiting for the seller to accept. Anyway, it is a great deal on a two bedroom in a very nice area and in pretty good shape minus a few minor repairs. Our plan is to rent it to DD24 at our break-even point.....so, she gets a great place for about half of market value, and in a few years we will sell for a small profit. We've heard all the horror stories of buying a short sale, so we will see how good or bad of a process this will be - wish us luck!

GAGWTA!!

 

[snappy]

Still at Disney. I was able to get together with MaryAnn 3 times last week. It was a joy to see her again after 2 years. she is sweet and her husband was attentive to her as always. Things got complicated when we moved from the boardwalk to Wyndham Bonnet Creek. I pretty much have to accompany DD17 and her friends. They are not early risers. Enjoyed the lazy river all morning yesterday.

Also able to see Sha and her friend Sunday afternoon for a short time.

Sharon was looking awesome.

Going back to our car Monday night from the studios about midnight DD17 was walking in between her 2 friends holding hands. It warmed my heart.

The 3 of them earlier were in our big jacuzzi in the unit giggling away. It turned out to be a brilliant idea on my part to invite the second friend at the last minute.

We also had a special time at the tea room at the grand Floridian. I sprang for the sparkling cider and we toasted each other. They posed drinking the bubbling cider from the champagne glasses. It was memorable.

We also saw wishes from the deck after eating at Narcoosses the next night.

Also, special moment.

Now trying to figure out a plan for next year. I want to bring my brother and his friend for about a week. I love boardwalk of course, but those presidential units at Wyndham bonnet creek are just as convenient maybe more so. And they are so very roomy.

My brother will rent a car when they fly n from NYC.

DD thinks boardwalk has more of a family feel.

I have taken a boat load of pictures of both so I can get input from my brother. He actually stayed at Wyndham bonnet creek in a regular unit n 2010 during a short trip with my mom and my but it was not a very successful trip for a number of reasons. My mother was not in a good frame of mind and it was too chilly to swim much in the lazy river so she complained a lot.

Off to the studios in a while to try and get them on toy story. I rode it a number of times, 6 times one day!!! But they don't get to the parks early enough in the day so we will try again today. Dd is interested in eating at prime time 50's. Then we will hit the lazy river again and possibly head to MK to finish the day.

We leave tomorrow but late in the day as we are staying in Tallahassee tomorrow night. Not too far, maybe 3 hours from here so if they want we can spend some time in whatever park they want after we pack up. Luckily we did the shopping for their boyfriends yesterday at downtown Disney and got that out of the way. They were able to meet up with a friend from camp last week who lives n Mississippi and also another friend from Baton Rouge (one we brought with us here May 2010 actually.)

They are so appreciative and sweet. My heart is full.

GAGWTA!

 

[Pea-n-Me]

Still at Disney. I was able to get together with MaryAnn 3 times last week. It was a joy to see her again after 2 years. she is sweet and her husband was attentive to her as always. Things got complicated when we moved from the boardwalk to Wyndham Bonnet Creek. I pretty much have to accompany DD17 and her friends. They are not early risers. Enjoyed the lazy river all morning yesterday.

Also able to see Sha and her friend Sunday afternoon for a short time.

Sharon was looking awesome.

Going back to our car Monday night from the studios about midnight DD17 was walking in between her 2 friends holding hands. It warmed my heart.

The 3 of them earlier were in our big jacuzzi in the unit giggling away. It turned out to be a brilliant idea on my part to invite the second friend at the last minute.

We also had a special time at the tea room at the grand Floridian. I sprang for the sparkling cider and we toasted each other. They posed drinking the bubbling cider from the champagne glasses. It was memorable.

We also saw wishes from the deck after eating at Narcoosses the next night.

Also, special moment.

Now trying to figure out a plan for next year. I want to bring my brother and his friend for about a week. I love boardwalk of course, but those presidential units at Wyndham bonnet creek are just as convenient maybe more so. And they are so very roomy.

My brother will rent a car when they fly n from NYC.

DD thinks boardwalk has more of a family feel.

I have taken a boat load of pictures of both so I can get input from my brother. He actually stayed at Wyndham bonnet creek in a regular unit n 2010 during a short trip with my mom and my but it was not a very successful trip for a number of reasons. My mother was not in a good frame of mind and it was too chilly to swim much in the lazy river so she complained a lot.

Off to the studios in a while to try and get them on toy story. I rode it a number of times, 6 times one day!!! But they don't get to the parks early enough in the day so we will try again today. Dd is interested in eating at prime time 50's. Then we will hit the lazy river again and possibly head to MK to finish the day.

We leave tomorrow but late in the day as we are staying in Tallahassee tomorrow night. Not too far, maybe 3 hours from here so if they want we can spend some time in whatever park they want after we pack up. Luckily we did the shopping for their boyfriends yesterday at downtown Disney and got that out of the way. They were able to meet up with a friend from camp last week who lives n Mississippi and also another friend from Baton Rouge (one we brought with us here May 2010 actually.)

They are so appreciative and sweet. My heart is full.

GAGWTA!

What a nice post, Laurie. Sounds heavenly!

 

[luvmarypoppins]

Well I am back ladies

Laurie is on her road trip home. She is brave to be with those girls and a great mom too. It was good spending some time with her.

My dh had a fever sun., so I missed Sha and the Star Wars parade.

Anyone see my thread on the restraunt board - I cried at Yachtsman 6/1.

Didint get to see Pats Mom but we will try again sometime to meet up and
Peg - sorry you are not feeling well. I hope you rest up and shake that infection.

My r hip was hurting a lot on the trip. I walked as much as I could. I am sure this is a sign of something not good as usual. I will put off seeing the dr. as long as possible of course.

Cheryl - so happy for your great test results. Glad they are keeping a good eye on you. You are sure adventurous in the real estate market. I am sure the new place will look great. You are very handy with everything and I am sure your dd will appreciate it.

smiley - thinking of you and hoping you can get the sleep issues resolved. One day at a time sista.

Linda - I am sure you are busy with your ds baseball. How is he feeling post op?

We loved the beach club and yacht club. The weather was cloudy a lot and we always missed the rain so that was good.

Oh and we came home and found out wonderful ds2 broke one of our family rules. That boy sorely tests my patience. His grades were acceptable but I think he could have done much better.

Ds 3 of course got great grades. I think his average is like a 3.75 or 3.8 which is good to apply for the next school as long as he keeps it up. He is at some leadership retreat since he is going to be a orientation leader for the incoming freshman. He has to attend a few other things over the summer. But this is on an island. Should be fun but the weather does not seem like it will be good. and since he had to lifeguard the last 3 days I really have hardly seen him.

Sat. I am suppose to go to a baby shower. We shall see. I have just been so tired.

Remember the teen girl with the brain tumor I asked you to pray for? Sadly I saw on facebook she is going to have 6 weeks of daily radiation over the summer. I got her a shirt,hat, pens and some candy from disney. I dont really know teen or girl styles so I hope she likes it.

Looks like our garage cleaning out was good too as the ds said lots of people were buying our stuff at the school. I am happy they made money from our junk When ds has time I guess we will work on it some more.

GAGWTA. Thinking of you all

 

[CherylDan]

Well crap. Onc just called to tell me that the got the results of the blood test I took Tuesday and my tumor markers shot up from 133 to 205. Ugh. There just isnt anything new showing up on the scan yet. They said I can still wait and scan again in two months, but if I start having any symptoms to come back sooner.
Blah, blah, blah.

 

[CherylDan]

LMP, just looked up your thread about Yatchmans.....what a great thing for that lady to do! Wow.....talk about one heck of a surprise! Hope you get rested up from your trip soon - WDW is such an exhausting vacation.

Laurie, sounds like you and "your girls" had a great time. Such great memories for sure.......and your accommodations sound outstanding!!

We are off to SoCal next week, DH & I and our two DDs....SIL cant make this trip, but it will be nice to have a real live family vacation again. We didn't get to do that very often when our kids were younger, so nice that we can do it now. Going to spend a few days at DL, and head down to San Diego.

 

[Feralpeg]

Laurie and Mary Ann, So sorry I didn't get to meet up with you. I'm still fighting this sinus thing. It was getting a bit better, but all this wet, humid weather isn't helping!

Sounds like you both had a good time. Yes!

CherylDan, Sorry to hear your news wasn't what you wanted to hear. Thinking of you! Hope you have a great time in SoCal!

 

[snappy]

Made it home today around 2 pm, but then I had to drop off the two friends.

Sorry i missed you Peg. Next time. You as well, Patsmom. Hope both of you are feelin gbetter.

Good to be home I have to say. I had heavy rain to drive through yesterday. I was completely worn out after 4 hours. I was glad I had a reservation in Tallahassee.

Today's drive was longer but not nearly as stressful. Our dogs gave us quite the greeting.

Cheryl, sorry to hear about the increase in the tumor markers. Hang in there. Enjoy your upcoming travels. You will enjoy that family vacation I am sure.

Was your offer for the condo accepted?

I will try and post a few pictures later. Boy did I take a lot. I got a great one of DD17 and me at the tea.

Much to do. Glad I have the weekend.

DH and I are applying for long term care coverage. Anyone else have this type of insurance?

I have a phone interview tomorrow for the memory testing. Dh's is tonight. It was funny because my best friend Cindy and her S.O. also recently applied to several insurance companies. She happened to call me today to say she was accepted by 2 of the 3 companies and is waiting to hear from the third. She even gave me some tips for taking the test, lol.

GAGWTA!

 

[smiley_face2]

Prayers said for the teen girl with the brain tumor and the lady with IBC. So much suffering out there.

Getting excited for those of you with the WDW trips planned. After making a couple of trips to DTD recently, I am definitely back in the WDW mood. I am so happy that you will be enjoying the parks soon!

Went for my second Taxol infusion today. I also saw the doctor. I guess I didn't understand the process. Originally, he told me that I would have eight chemo sessions. The first four were the Andromycin and Cytoxin. Then, I started the Taxol. I assumed I'd have four of those. Today, I found out that I will have twelve Taxol sessions. So, instead of two, I have ten left. Not so bad since the Taxol seems to be much easier to tolerate. I was just hoping to have it done. Now, I will have my last chemo on July 30.

Feeling good. I can't complain. I feel so lucky.

Thinking of you all!

I am so far behind....trying to catch up on everyone, but wanted to jump in here before I got to the end and forgot!! This same thing happened to me! They need to do a better job explaining the "cycles" of treatment, just exactly how many actual treatments you will be getting of each drug and what interval and when you willl be finished. I actually started crying in the hospital when they told me I was so disapointed!! But the taxol ended up being so much easier that ultimately it was fine. Just a shock. That is so bizarre...my last chemo ended up being on July 28 or something like that, that was when we left for California and Disneyland 2 days later!! Hang in there!

 

[PatsMom]

Maryanne and Laurie - sorry that we never were able to connect. Between my husband not feeling so great and me being so tired and in pain it was not our best trip to WDW. Felt sorry for my daughter who was back in the room early almost every night. She could have gone to a park by herself but that isn't much fun. I did go to the pool and hot tub with her a few times.

Had my CT scan when we got back. Mixed news for sure. The lymph nodes have shrunk quite a lot which surprised me since the pain was back. But they can see "changes" in my stomack, including thickening of the stomach wall. Which explains some of the new pain. And also could be the source of the primary cancer, which the doctors still believe is important to pin down if they can. So my treatments are on hold until they can schedule an endoscropy and stomach biopsies. I have a history of Barrett's esophagus which is a precancerous condition so they defnitely want to check it out. Could influence which drugs they use going forward. If there is nothing to be seen in the biopsy, then we will keep doing what we have been doing - Gemzar and Carboplatin. Nasty drugs. I wish I wasn't so tired all the time!

Best wishes and prayers for everyone. LMP - you need to get your hip checked out! I know you hate to think of anything else being wrong. I get that way too.

 

[luvmarypoppins]

Cheryl - Sorry about your numbers. Enjoy your trip with your family. I am sure you and your onc. will come up with a plan of treatment. Would a pet scan show anything versus a ct scan? Just wondering. I am going to ask my own rad onc. this. She will probably do a scan on me next year but I would rather have a pet scan, not the one she is gonna do (thyroid) because it would cover all cancers etc.

PatsMom - sorry you are having such a rough go of things. I hope the endoscopy will give you some of the answers you need. I would def. rather have that then the colonoscopy any day! I did both at once when they were going on their little hunt with me too. I hope they can find something that can help you deal with the pain issues too. Now you need time to recover from the vacation, I am sure.

smilie - glad to see you posting

Peg - hope you are feeling better. I am sure the rain down there is not helping.

Laurie - so glad you made it home safely. Yes, post the picture of us too when you get a chance. Not dh, just you and me on the bench!. Cant wait to see the rest of your pictures too.

Well I just got back from the baby shower. It was a lot of fun. The poor grandma who I am friends with had to leave early. Her pain is getting to her too. I hope its not the cancer again. She says its fibromyalgia but I dont know about that. She said her last pet scan was ok.

We played baby bingo and I won the first prize. My voice was not good so some of the sweet ladies at the table with me shouted bingo for me.

D1 has won his games so now he has to go to Manhattan tonight for more games. Ds3 is sleeping from his retreat. He said he didnt get any on the retreat and dh has fixed the toilet. Took him hours. Something from his beard groomer fell into the toilet. He had to take the whole thing apart. Luckily that he used to work for his uncle, who was a plumber, in high school.

GAGWTA. Thinking of you all.

 

[smiley_face2]

Cheryl really glad your scans are still good, and that is so awesome you are off to California again with your daughters this time!! awesome place to make good memories I don't know much about tumor markers, will have to do some reading, but I thought there were other things that can make them go up too? hoping it is that for you!! Can not wait to see some more pictures from you!
Laurie, so glad you had such a good vacation, and you need to share some pictures too!!
Pats mom, I've had so many, like about 15, esophagoscopies done, dilatations, hellers myotomy, biopsies, my esophagus and stomache are my weak point in my body. I hope you will be ok.
LMP... I just broke down and went to the dr. was having severe vertigo, I mean severe!! was worried I maybe had some kind of met.... but she gave me a test, too complicated to explain, but it involved me laying on the table and trusting her to not let me fall off! lol...anyway it ends up I have benign paroxysmal positional vertigo.... had to look at it while I typed it cause I can't even say it!!! lol... I was so glad I went and can stop worrying now. The other day at the beach I sat down on a rock and sat and cried, my hip hurt so bad. I spent 2 days hardly able to move, so she checked that out too, just old age Lol!! So go.... !
The pills she gave me, and our awesome new bed have me sleeping like a well behaved baby now, and that is indeed helping me a lot with depression. When I woke up this morning I could not even remember falling asleep, and didnt' remember waking up one time! Still cry every day at least a couple of times for our son, but I can now find some joy in things as well, and am connecting with our newest grand son, which is so nice. for a while I just felt so shut off from everyone and everything, just didn't want to be connected to afraid of losing anyone again.
Yes indeed one day at a time!
Take care ladies!

 

[CherylDan]

Ugh....just lost my post!

Oh well, here's the cliff notes version: (do they still sell cliff notes??)

PET scan will probably be in my very near future....doc has been waiting for *something* to turn up, I'm betting this big jump in the marker numbers will do it.

Condo purchase is moving along, we are waiting for final approval from the mortgage holder since it is a short sale. Inspection went well today, no surprises.

Would love to see pictures from all your trips, ladies!

PatsMom, hope you get something more definitive soon.

GAGWTA!!