Calling all TNs
Comments
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MagicOne
If you have any clubs or groups that you are let,one or two in that group know just a little of what is going on in your life and you will probably find that you have lots of friend willing to help. I know these things worked for me.
the first thing that I would do is FIND A NEW GROUP OF DOCTORS ( YES I MEANT TO YELL )
Hugs,cfs
beccad0 -
MbagicOne,the first thing that I would do is FIND A NEW GROUP OF DOCTORS ( YES I MEANT TO YELL ). If you have any clubs or groups that you are in, let one or two in that group know just a little of what is going on in your life and you will probably find that you have lots of friends willing to help. I know these things worked for me.
Hugs,cfs
beccad0 -
MagicOne
the first thing that I would do is FIND A NEW GROUP OF DOCTORS ( YES I MEANT TO YELL )0 -
Wow inmate, i really would have looked at that and thought of it as a rash,if i could hug ya, iwould, can't imagine what you are going through!
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Magicone,what a situation! If it's vascular,that's probably why they don't operate. Have you considered going to differrent dr,? Are you eligible for some program that can have someone come to your home and assist with care?I am a hospice nurse for an organization in ohio,we have a palliative care program for people Who Are Not Terminal,want to emphazise the not terminally ill, they have a diagnosis that makes them appropriate for palliative care for pain relief,comfort,perhaps offer assisstance with home care,assistance with medication,treatments. I am not saying you are appropriate for hospice,just throwing that out there, wish i could be there to help you. I think you get to the point where you wonder about going on,its a personal decision,rest,get pain relief, see a diifferent dr. ,that could help with your decision. You are so much in my thoughts!
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(((MagicOne))) - you poor thing, you need some support! And quickly!
First, make your way over to the Stage IV/Metastatic Breast Cancer discussion forum and introduce yourself. You may find someone who has somewhat similar circumstances.
http://community.breastcancer.org/forum/8
Second, find the nearest nationally certified cancer center, make an appointment and get a second opinion. If you are able to travel, you might think about getting to Dana Farber, MD Anderson, Mayo or any of the other "biggies". You don't have to be referred - most of these big cancer centers have websites where you can request an appointment. And they are very responsive, you won't likely be ignored.
(((Inmate))) - sending some luv your way!
The best thing that's happening today - I am unofficially a great-grandma (now that makes me feel old...lol). My son's SO's daughter and SIL just had a healthy baby boy about an hour ago. It will be nice to have a baby in the family again.
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(((Inmate)))
MagicOne, I'm sending you a private message.
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((((Inmate))))) so, so sorry that you have to deal with this!
Phyllis0 -
Inmate: Thank you for posting that picture. I too would just think of it as a rash and with this heat it's no doubt that people may think it's just a heat rash. You're amazing, you're an inspiration, you're a warrior and you WILL win xo0
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Inmate: more hugs and love being sent your way.
MagicOne: no words... that is awful what you are going through. Sending hugs and love your way too.
To all you wonderful ladies - here's to another day kicking cancers butt. Thinking of you all with love and lots of hugs.
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Oh! and forgot to say to the new great grandma Michelle - congratulations to you all. Wonderful news.
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Inmate: You truly are a warrior! Continue the fight!
MagicOne: Great advice from LuvRving. Don't be shy about asking for help..people will respond in ways you've never imagined. As far as our father is concerned, now is the time to speak to him and mend your relationship. If he lives close I'm sure he will be more than happy to help. My mother passed away from ovarian cancer in 1984...really affected my dad and I secretely blamed him for not being as attentive as I thought he should have been. But that is my problem...he did the best he could. Put negative feelings aside and tell him what's goiing on. He will run the gambit of emotions at first but I have a feeling he will jump at the chance to help his daughter. Best of luck.
Has anyone heard from Hope60? I haven't seen a post since July 10...she was due to have an MRI.
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I was just thinking about Hope60 and have not heard anything from her.
Off to meet up with my work team and rest of the agency to share memories of our friend and co-worker who died on July 9th. 49 years young.....undetected cancer. Very sad and it's hard for me to not stop and think that all this could have been happening for me if my family doc had not sent me for that initial ultrasound. Big girl panties are on and my purse is full of kleenex.
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Dang skin mets Inmate..I hope you beat those suckers back again....but I do want to thank you for posting the pic...its hard to know what to look for when you don't know what you are looking for...does that make sense?
I'm worried about Hope also...hope she comes back here soon...
Born to survive...I hear you about going the the memorial service today.....I'm proud of you...its very hard to go to these service and not think about what if..
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Inmate - Thank you, Thank you, THANK YOU! If I has seen something like that I would have just thought it was a rash or shingles again, and probably ignored it for awhile. That picture on here may be a lifesaver for someone on here someday. Keep fighting girl!
Magicone- I'm so sorry for what you're going through. I echo eceryone's great suggestions. I have one more that might help. I did a search on Texas and found out that you have the CMPAS program. It's called the PCA (personal care attendant) program in MASS. While each state's program has different rules, there are basic similarities. Anyone with a chronic disability, who can qualify for Medicaid, can enroll in the program. Your needs are then evaluated (includes personal needs like bathing, and also daily needs like cooking and laundry) and you are assigned a number of hours you can hire a personal care attendant to assist you. In my state you can hire friends and family members to be caregivers. I recommend you talk to a Social Worker who is familiar with the program, because they are very good at finding ways to get you enrolled in Medicaid. Also, like all government programs, things move slowly, you want someone who will try and expidite the process for you. (Medicaid is the federal name of the program, but I don't know what your state name is for it. Every state has their own name for it. Up here it's called Mass Health)
Here are some links to the CMPAS program in your state.
http://www.dads.state.tx.us/services/faqs-fact/cmpas.html
http://www.pascenter.org/home_and_community/TexasStateMedicaid.pdf
http://www.dars.state.tx.us/services/personalattendants.shtml
Luv - congrats Great Grandma (I will never call you that again, you are much to youthful to be called that.
LM50- there's been no message from Hope yet.
Borntosurvive - How tragic, I'm so sorry for your loss. (I remind myself daily to be grateful for my herniated disc. If not for that, I wouldn't have been forced into a physical by my PCP, and this beast caught early. *hangs head* Don't even ask how long I had put off my mammo. I'm so sorry your friend didn't get a chance)0 -
Inmate - thanks for the picture. I would never had thought that it would look like that. I have a few bumps that looks similar and showed up last week - about 2 weeks after radiation ended. I just thought it was still a reaction from rad's but will now watch it more closely if it doesn't go away.0
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Luv......congrats Gramma!
Magic......I agree with the others on getting a second opinion. Sending good energy your way!
Born.....love and strength to you as you attend your friends memorial.
Beccad......Hi
Where is Hope?
One of my last conversations with Laurajane was during the first appearance of mets and she advised me to insist on getting a biopsy as hers were diagnosed as shingles too. Seems like so long ago that we had that conversation, but my thanks goes to her for making me be my own advocate. We all should remember that if it doesn't feel right, it probably isn't and if it is what's a little egg on your face?
Also.....where is Bak? have I missed a recent post from her?
Have a great day ladies! Love to you all!
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Catwhisperer.......rads can also give you a similar reaction. Use the 2 week rule and if it doesn't go away, call the Dr. A tip that helped me not freak out was to take a picture every couple of days and look at those to see if it has changed. You can drive yourself batty looking at it every day and try to determine any change. It is much easier to compare photos.
Love......
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So glad the new ladies made it through the first round of chemo!
Bernie - thanks for the funnies!
Annie - loved the big baby!
Inmate - thanks for posting the mets photos. Every time I have a blemish, near my scar line, I freak out. So sorry you are dealing with this. CFS!!!!!
Magic - I hope you have found someone on the Stage IV board to compare notes with, and are able to get some help, so that you and your dear friend, can just spend time visiting.
I read from my iPod, which makes it hard to remember, all the posts. I do wish everyone, exactly what you need.0 -
I had a ct scan and bone scan yesterday. I just got the call from my Onc and all are clear!!!!
Thank God!!!
Praying for all you ladies, that haven't had such good news lately. Stay strong and positive.
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KS.....Yeah for all clear!
Karen.....I was really hoping for adult onset acne.
Okeedokee, off to acquire one more scar for my quiver.
Love to you all!
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Ladies: so many thanks for your support and comments. Had 1st Taxotere on Tues, Neulasta today. So far, so good. Had steroids in IV on Tues, so they haven't worn off yet. Claritin has worked for me in past , for Neulasta. (one day, forgot & took Zyrtec instead, and had bone pain that night)! Haven't made that mistake again. :-)
MO isn't concerned about the thyroid, said that even if it turns out to be something that needs attention, they wont do a biopsy, or treatment, till tx for BC is done. I am seeing endocrinologist, and asking them to consult with MO. I am putting it to the back of my mind, for now.
No anti-nausea meds, other than Zofran in IV yesterday. I'm sure it's worn off my now, and I haven't had nausea. Surprised me, since I had 10 days of it on FEC.
Good luck and tiny SE's to all having Tx this week.0 -
Inmate, thank you for posting that pic. It gives us a good visual of what to look for. I sure would be fooled, thinking it was a heat rash or shingles. Damn, girl - looks like your incisions were healed and fading nicely. This dz is just so bizarre!
MagicOne, our hearts all go out to you. fishinurse has really good advice, as well as LuvRVing. Usually cancer tx centers have social workers and financial counselors who can aid you with getting home help. Please look into them - you shouldn't have to deal with all this alone. And your best friend...what a blessing she is!
Take good care of yourself, and please get some support. It is just too hard to heal when you are so overwhelmed.
~ Shar
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Omg Bernie-Too funny! It took me awhile even after I read the caption!
MagicOne-I have no advice to offer, but I am sorry you are going through this. I know there was a woman on the boards with a similiar situation, does anybody remember her name? Like Luv said, if you post on the stage 4 boards you may find someone going through the same thing.
Inmate-I am here! Your mets do look like a normal rash, do they hurt or itch? It just sucks that you have to deal with this again. Do you have to do chemo again? My issues are so minimal right now compared to others. I am starting to finally get a bit of energy back. I have my 6 month bone scan in a couple of weeks and my annual pet/ct at the end of August and I am trying not to freak out! I have been dragging my feet on scheduling my hysterectomy, just not ready for another surgery, but I guess we do what we have to do! Have you heard from blondelawyer? I miss her too! Hopefully she is traveling and having fun!
Hope-Thinking of you.
To all you other wonderful women here-I hope you are all feeling well and enjoying life the best you can! Sometimes it is just so hard to deal with all this crap, but you gals make it so much more doable!
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hello Inmate,I was having trouble sending messages this a.m., I just gave up. I am doing better with the message part. However, it feels like that Xeloda is trying to take me out starting with my feet. They are so swollen so much I am wearing men's sizes 9 or 10 sandals with Velcro on the straps. and my baisance sucks!
I will probablym keep using it as long as the liver numbers keep going down.
beccad0 -
Becca - are you getting calls from the Genentech (Xeloda) support RN? If not, sign up on Genentech's website as this service is free.
http://www.xelodasupport.com/ or 1-877-987-2487
The support line is staffed 24/7. They will send you a package of information, pill box, and a helpful booklet about Xeloda. I signed up and I'm getting calls every couple of weeks. If your feet are that bad, you should talk to your MO about whether or not the dose should be reduced. It is dangerous to have feet so swollen that your balance is affected. You surely don't want to fall and hurt yourself. Perhaps your dose needs to be lowered a bit.
Thanks for all the congrats - I got to the hospital to see the baby and he is just adorable! And Kathy, you are right, I'm way too young to be a great-grandma!!!
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I have a question for everyone.. have you all had a pet scan?
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Lory - I have had 3 PET/CT scans. The first was in May 2011, then October 2011, then May 2012. I'll be on the every 3 month schedule for a while, my next one is scheduled for August 6.
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Congrats Luv- what a beautiful baby!! I don't think I will ever make it to great-grandma- I am 46, but my kids are only 10 and 6 (almost 7)!
Lory- sorry, I haven't.
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