Calling all TNs
Comments
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Cocker- Good news is ALWAYS welcomed! Yahoo!!!
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Cocker, I'm so glad for your clean scans!! Don't ever hesitate to put good news here.
MBJ, I am so sorry about your situation. I hope the tamoxifen will start working - I read here from others who have been treated with it that it takes longer to start working than chemo so maybe you just haven't gotten any benefit yet.
Fighter, I'm glad for your good results. I had rads. I saw the plastic surgeon today and he agreed to try expansion without doing the lat flap (I have some existing back problems) if we take the expansion slow. He could start in a month but I may wait until December just because of the risk of recurrence with this FC.
Heather, I finished 11 days ago!
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Annie - Congratulations!!!!! I am SO happy and relieved for you.
MBJ - Good to hear from you. Sorry for all that you are going through. You have become like family, a close sister. I am so sorry, wish I could take your pains away.
I feel selfish to ask this question, but.....ladies, I am going through one more freaking out........ I am seeing my Onc. on Friday. I always get labs done before I see him. Tumor Markers - My CA-15-3 is always low, from 5.5 to 7.1 to 5.9 and today to 5.7. CEA is always low too - 07. to 0.8 to 1.0 to 0.9 to today to 1.0. But my CA-27-29 is freaking me out, from 9.2 to 7.6 to 11.6 (Nov. 11) to 17.2 today (this is a big jump). My alkaline phosphate is 67 which is stable and the same as last test.
None of these tumor markers had ever gone up, even before or during cancer. I think I had a first one done after surgery. The CA-27-29 was added in June 2011, the others were taken since 2010.
What do you ladies think of the CA-27-29 jumping from 11.6 to 17.2. That is a 20% jump. Although it is within the normal range (0.0 - 34.9), it is still a big jump. Does anyone have any pointers on this subject, please. Thanks.
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CS - HOORAY!!
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Lovelyface: They can and do jump around. As long as they are all still within the normal range, there is nothing to worry about. If they were to continue to rise, and rise above normal levels, they would still watch them to see if they continued to rise, but I really don't think you will have to worry about that happening. Mine 27-29 goes from 11 to 15 back down to 12, etc. each time they are taken my onc said that is totally normal. Take some deep breaths, and relax as best you can.
Hugs,
Linda
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(((Susan))) - sending warm loving thoughts to you and the family.
Gentle hugs,
Linda
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MBJ: I put some links re the liver in an earlier post for you, hope you get to take a look at them. Sending love to both you and LJ for peace, serenity, strength and much better days.
Hugs,
Linda
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Lovelyface - My CA 27.29 is at 34 (but down from 62). I would be thrilled to have numbers in the same range as yours! There are a lot of things that can influence this particular test, so try not to worry.
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I have a question too. How do you know when you need a bone and/PET scan? My onc won't do scans unless I have symptoms, but what are the symptoms? I get paranoid over every ache and pain. I have shoulder pain that has been recently treated by PT. I have pain in my armpit and under my breast, umpectomy side,which is mild LE but how do I know LE pain from, you know, mets?
Kristy0 -
Kristy, that is the $64,000 question! I had hip pain last August that lasted 3 weeks. I am very active and thought maybe I over did it at the gym. I tried rest and motrin with minimal improvement. I called my Onc and she ordered an MRI. It showed a few abnormal areas so then my Onc ordered a PET scan. Turned out to be degenerative arthritis! In general, I think it is a good idea to follow the 2 week rule. If the pain is still there, make the phone call and get things checked out. If you have a symptom and want a scan to get it checked.....ask for it! Its OK! I am a big believer of being your own best advocate. Squeeky wheel gets the grease.
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Becca - Damn and Blast! I don't know how you wrap your mind around that news, but I hope you can soon, and form a great plan of attack!
Love all around...0 -
Linda & LuvRVing - Thanks for sharing information on CA 27.29 with me. I have created a spreadsheet on which I note things such as tumor markers, Vit D levels, Alkaline phosphate and glucose. The spreadsheet is great and gives me information at a glance. At this point I am not worried about the number 17 which is raised but the trend, 7.6, 11.6, 17.2 (9/1/11, 11/7/11 and 2/29/12). The 15-3 and CEA are perfect and have not risen. I was reading about these tests on the internet today, which were indicating that doctors look at the trend, rather than the numbers. That is why I have been worried. I was worried even last time when it had gone from 7.6 to 11.6. I plan to ask the Onc. to take another test in a week, as I wouldn't be able to wait 3 months for this test. What a nightmare. Sometimes I wonder will I be like this for the rest of my life, that is, if I have a life anymore. Sorry for being such a downer, ladies.
NavyMom - I am glad to hear it was degenerative arthritis and not the beast.
Huskerkkc - yes that is the million dollar question with which we struggle with every day. I still have a suspicious pain on my neck. I will ask the Onc. if the MRI covered the pain area or not. If not, then I will ask him for a bone scan. Another scary nightmare to wait for the results. I suggest ask your Onc. for a scan whenever you feel the pain has gone on for too long.
LuvRVing - Congrats on lower number 34 down from 62.
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Kristy,
I wish I knew the answer to your question- I don't know what is the "new normal" and what could be a problem sometimes. I just got finished with a clinical trial of extra chemo and I had a lot of bone and muscle aches during the trial. It is already starting to get better but I have some minor pain on my non cancer side rib area that I am keeping a watch on. I have always had tender ribs and tissue on the radiated side since radiation. If the other side rib pain doesn't go away soon, I will mention to my oncologist. He is really good about ordering scans. My last CT scan was in October 2011.
Lovelyface, I think my MO said my markers were at 36 the one time I asked. That is one thing I don't ask about for some reason. I stress out enough on everything else.
He told me under 40 was normal. I would ask your MO Friday about it and see what he says .0 -
Lovelyface: Tumour markers are notoriously unpredictable and unreliable, which is why many oncs (all at my cancer center that I know of) don't use them unless they are following advanced disease progression. Please don't let them work you into a frenzy, especially as you are still well within the normal range!
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Lovelyface you are a very informed patient and I admire that. Never thought about recording my stats.
Christina-the muscle aches will last for awhile. I know mine did. It pretty much took a year for mine to subside. I was fine while I was moving but if I sat down and tried to get up. I felt like a 100 year old woman.
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Luah: I am so happy to hear that Tumor Markers are used for advanced disease progression. I am relaxed and happy today after reading all your comments. I am putting together my list of questions today for the Onc. tomorrow and believe me, revisiting cancer issues is no fun. I hate it.
Christina1961 - I just wanted to suggest to you and others who wants to try this - to massage your breasts and entire rib areas with coconut oil each night as you prepare for bed. I have found this therapy to be the best thing ever. I used to have a lot of very sharp pain underneath my breasts and there used to be lumps I used to feel. I asked quite a few doctors what they were, they said they didn't know. By massaging they continue to go away. Every once in a while they come but with massage they do go away. In my opinion, I feel they are some sort of liquid which collects in the lymph nodes. Either the liquid formation is from having chemo or maybe from menopause, both of which happened to me at around the same time.
Get pure coconut oil from an East Indian store, they have the best. Costco has it too, however, I am not sure why their's don't have any smell, which means that it is probably processed. I was born and raised in Fiji Islands, and I have first hand knowledge about coconuts, which is the most pure oil ever. Everything about a coconut is pure, the water inside the shell, the oil, the milk. Coconut oil when rubbed on the scalp gives you healthy lushes hair, so for those of you who want their hair back really fast after chemo, use coconut oil, massage the scalp, and wash it the next morning.
By massaging your rib and breasts, one can also get really familiar with their bodies, lumps, surgical scars, etc. This works great for me.
Hope everyone has a great day. It is raining here today in the Bay Area, California.
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Lovelyface - just as Luah commented, tumour markers are not checked at my cancer centre either. Glad to hear you're feeling more relaxed about things. Let us know how your visit goes tomorrow.
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Thanks for the tip, Lovelyface! I will look for the coconut oil - if the non-Costco oil smells like coconuts, I would prefer that over a coconut oil without scent. I see my MO tomorrow, too.
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I just realized, I'm not feeling scared. What a wonderful realization! I hope it lasts. It is so hard to live your life, always looking over your shoulder.
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I have been away from this board about a week and jsut catching up
Beccad-I am so sorry about your news.Hang on and make a plan, you can do this!
OBXK- so glad your scan came back clean. What a reason to celebrate
Lovelyface..my numbers are inthe 20's and my onc says they are normal..makes me freak out but I can't control things there.
Laura....know you are such an amazing woman and I get so angry at this #%%$$# cancer. I hope you know we are all here for you for always.
Suze hi there if you are lurking.
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OBXK - Wonderful! I love those moments when I completely forget and life feels normal again..
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Good morning ladies. Just thought I'd check in and say hi.
MBJ- thank you for your message. Have you considered getting another opinion. How on earth can they give you an time estimate on living when there are so many chemos out there that you haven't even tried? I just don't get it.
Ive got a lot on my mind. I realize that with me they can't even give me an accurate estimate because my cancer is moving so fast. The pain is increasing by the day. I am meeting with hospice today at 1:00. I just pray I can be here for my sons graduation. I have a birthday coming up next Saturday, I'll be 49yrs old. Hard to believe. I'm stuffing myself with herbs and meditating. I need to get some things in order. I'm going to talk to some friends about funeral arrangements. I guess I'll see if I can prepay for my creation. All really boring stuff but I want my kids to have to deal with as little as possible. I'm sure my friends will help.
The best thing that happened to me yesterday. I received a phone call from one of my contractors yesterday morning. He had called the day before to see how I was doing. I told him the news. Yesterday he called and said " Laura Jane, what are you doing next Monday?" I told him "nothing really I would be at home". He said " Good! I'm bringing my crew over to build that deck you've always wanted, so when your too weak to go down the stairs to your gardens you'll still be able to enjoy them". I burst into tears and told him "thank you, but I just don't have the money and I doubt I'll be able to work this spring", he said," it's not going to cost you anything, I just want you to be able to enjoy looking out at all you've done and see your plants and those fish you love". I told him in-between tears how happy that made me and I didn't know how to say thank you for such a wonderful gift. He said my thank you was enough. You guys, I just can't believe it. I've wanted a deck for so long but I've been dreaming about it for the last week and really regretting not having had one put in while I was working. There always seemed to be something more important. When I was feeling good I never really thought about when I wouldn't have the energy to walk down the stairs, other than many times when I was doing chemo I thought about it. But I always thought I'd beat this FC too. I'm still in shock. He's always been so sweet but it's always been business and let me tell you, we have often conflicted over pricing. I contract him for things my crew doesn't do like masonry, concrete and decks etc... What a genuinely nice, big hearted man. So nice to share something happy with all of you.0 -
Ha ha! Not creation I meant cremation. Kind of ironic. LOL
Wish they had a guide book " things to do before you die" you know? With a checklist or something. How lucky I feel in a way to have the knowing and be able to write letters to my kids and not procrastinate on things. In the past its been so easy for me to say, not right now, maybe tomorrow. I find that I am doing this much less. I'm rambling but I feel good in my heart today. Hope you all have a great day too!0 -
LJ- What an awesome gift from the contractor! I admire that you are taking matters into your own hands and dealing with all the "boring" stuff so your kids won't have to. I wish you were not in so much pain. I hope you have some good days and are able to enjoy your birthday next Sat.!! You are in my thoughts daily and wish you a happy day!
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Laurajane, What a wonderful man, this contractor. You must have rubbed your beautiful soul on him, that's why his big heart is showing. I hope you have many many more years to enjoy your new deck with comes with so much love. And you, MaryJ and Suze are the strongest women I have ever known in my life, I swear. I actually put myself in your place and can't even imagine how I would make arrangements for myself. I must admit that I have gained a lot of strength by just being on this board, putting myself in others' positions. While some women I know don't even want to ever talk about their experience, I actually want to experience the worst side of it, so that this ugly beast never gives me the kind of shock it has given me once. Oh, by the way, I have been making short videos these past few years for family and friends on various subjects such as retirement, birthdays, life histories, etc. These days I am planning to make one on my life, the title I have thought about often would be something like - "Innocence Lost"...... to me this disease makes a person lose their innocence about life, it makes you see reality so upclose. Does this make sense?
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My Onco. said that he had not even noticed my rise in CA27-29 since it is not out of range (mine is 17, over 34 is out of range). Then he said something which I was not able to grasp - but that my biopsy might have impacted the test and that's what made it rise a bit. I was not able to ask him to explain this to me. I will try to research on the internet. Regarding my neck pain, he is a little concerned, but asked me to see my primary care doctor for pain managment and see if it goes away. If not I see him in 3 months when he will do some imaging, or I can see him sooner if I feel like it is a concern. Overall, it was a pleasant visit with him and I am now relieved over the tumor marker test, however, can't wait for one more test to show that it has gone down.
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LAURAJANE: Honey, I thought I was doing so well and I wanted to design and somehow give you a kitchen at cost. I wish you knew someone there who could do the work.
Hearing about your deck is the best news I have heard all day. The man who is doing this is truly an angel! You are so full of love you just so deserve this!!!
As far as chemo they will do a re-check on the 15th. Acording to the last tests I am full of cancer of the bones and liver. Their isn't a second opinion -- no insurance and I am at county, but I am getting great treatment.
Real PT hopefully starts Monday.
To everyone else, I read but don't have the energy to reply or respond.
BIG HUGS!!!!
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LJ that is just awesome you are getting a deck! How nice of him. You are such an inspiration to all, and how great of you to think ahead for your kids. I think all adults should do this no matter what the situation.
MBJ so sorry for what you are going through. I really hope they decide to try another chemo! Never give up!
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MBJ- don't worry about replying- just concentrate on getting stronger. I am glad you are getting great treatment- hope they are keeping you as comfortable as possible.
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LJ, What a great gift! It's funny how some of the people we never expect to help or even call are the ones who come through with something wonderful like that. I had a friend, but not a close friend, a contractor also - who called me every two to three weeks during my initial chemo. It really touched me. I hope you really enjoy the deck - do you have koi? I think they are gorgeous. I have a big hole in my yard and a concrete fountain with faces that has been waiting for a few years now to become a pond with fountain.
MBJ, You never have to respond but hopefully knowing we all care and want you to get better will help you feel better and not as lonely. During my days in bed during this, it always particularly helped me to connect here.
Lovelyface, I bought some coconut oil - it is Tree of Life organic refined coconut oil. No smell, really, but it really moisturizes - even better than the grapeseed oil I've been using.
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