| T O P I C R E V I E W |
| suzyhomemaker |
Posted - Jul 24 2008 : 2:39:43 PM
Hello, ladies of MJF Forum. Thank you, thank you, thank you for prayers. I know this is the deciding factor in telling you I have good news!!!
I had a CT Scan before my Avastin treatment on Tuesday, July 22. I was nervous as the Medical Oncologist wanted to make sure my stomach issues were not related to the Avastin. I read the dictated report from the Radiologist. It said "There are no bowel perforations (nasty possible side effect of Avastin), the mass in right pelvis is SMALLER and the spot on section 7 of liver is same sized. There are no new metastases in liver." Whoo hoo!! This is incredible news. It shows that the disease is either stable or improved. How is that for good news?!?!?!
There was one other thing. The stent in my right ureter is either blocked or not in the right position and causing fluid to build up in the kidney. I called the Urologist. I see her next week. I am hoping it will be pulled out the following week, first week of August. I have felt from the very moment I opened eyes after the surgery to change it that something was wrong. It has always bothered me. They did an abdominal x-ray a few weeks after it was changed in late March and told me it was "fine". They told me some patients are uncomfortable with it in, but mine has always felt sore, not just uncomfortable. I told them I was not like this with the first one. Anyway, this one can come out for good now, and I am excited about that. One less thing to deal with.
The other thing is some stomach stuff. After consulting with the Biochemist, it turns out to be self inflicted. I did a Candida Cleanse formula. Based on the ingredients, it wiped out good organisms as well as bad. Even though I was taking probiotics all along, I got a stomach flu on vacation in mid June. It has never realy gone away. He said it is probably an opportunistic bacteria. We are going to run thorough testing and find out what it is and then clear it up.
Mid August I have a PET Scan which shows activity. I am praying it is good news as well, less or none in liver and pelvis, none anywhere else. After that test and treatment and surgery to get the stent out, I will be a healthy woman once more. I am already almost there. I feel so good and much better than I have in three years.
I will continue with Avastin treatments for a year to make sure about nothing coming back or starting again. I am SO HAPPY!!!! The Medical Oncologist was ecstatic. I just feel like the luckiest woman, one who hit the lottery. I am going to live a long and healthy life. I just feel it in my whole being now.
Thank you all for prayers, packages, good wishes. Please continue with some prayers for me until I have this all settled in mid August. I would really appreciate it. I just am so happy to be able to share good news. 
I'm still having a few issues here with pain and such. I'm on some pain medicine which means I now am on anti-nausea as well.
It makes me nervous about PET Scan on Tuesday. I know you ladies will be surrounding me with prayers and good wishes, and I thank you SO MUCH!!!
My stent change was successful. I have a smaller, more flxible one now, and I can't feel it. That was a wonderful change.
Thinking of all of you as the garden reaches fullness.
Well, not the news I was hoping for, but not the worst news either. So I had the PET Scan and the report came in today. I still have just the two spots. That is the good news. They are the same size. Another piece of good news. The bad news is they are "hotter", meaning they are busy metabolizing all that glucose that was radioactive and "tagged".
So, I need to consult with the biochemist to work on this some more. I am set up to talk with him on Wed as he is out this week. Maybe he will fit me in on Monday even.I am also going to request a new Medical Oncologist. She is frustrated with me not laying over and playing dead (pun intended here) like a good doggie. Nope. I just like to save their hardest weapons for complete desperation, and I am not there yet. I need a doctor who will go the extra mile for me, do some research and help me try a few new things out. She will not even do this for me.
She calls this "Progressions" as I have some pain back and the Pet report shows increased activity. I like to think of it as an opportunity to pull out some secret weapons. Not quite sure what they all will be, but I did get a piece of research on a vaccine called Lovoxin C that had good success with women in my situation. I sent off an email to company and will be calling them tomorrow to find out how to get into a trial program for it since my doctor won't help me out here.
In the meantime, I am going to continue with Avastin. Let's hope and pray that in two more months time the spots look "darker", less active and still NOWHERE ELSE. I am even praying they are being destroyed completely, eaten up by my immune system, never to return again.
A few tears tonight. I remember reading that Jack LaLannes said he has to "work hard at living", and I am working REALLY hard at this, doing everything I can to make my life beautiful, healthy and long.
Ok, so could use some more prayers. I especially could use them for sleeping better and finding a bit more pain management. Could you also pray for my two children and husband? Maddie is old enough to know exactly what is going on and Jake figures it all out on his own from behavior.
Clare
Well, I have the BEST news now!! I spoke with the Gynecological Oncologist on Friday. All my tests are available to review for all physicians at MSKCC. He reviewed CT Scan, PET Scan and bloodwork. He said "You are stable or better as the spot in the pelvis has shrunk." He went on to tell me that my Medical Oncologist is just concerned for me. She really cares about you.
So I called the Medical Oncologist on Friday and talked with her. She has experience with all types of cancer. The Gyn Onc deals with women's cancers below the belt (like mine, cervical). She feels that adding traditional chemotherapy at this time might increase my overall outlook. When I explained to her that I can't make that choice now. I would have to be desperate for that to happen, and I am NOT there yet, she understood me better. I get her a bit better. She comes from an Eastern European country, and she is just very blunt. She is not intending to hurt my feelings. She said she is strictly telling me from her experience and research what she thinks could be my best option.
So, now we are on better footing, and I am going to give it a second shot. I told her that if she has negative news to share, to please save a bit of positive news to offset it for the end. I explained that I need something to grasp for hope in order to keep positive and looking forward.
I am going to continue with Avastin for 2 more months. If I am feeling the same or better, then I will continue for another month or two before the next set of scans.
I spoke with the Biochemist. Intensity on a Pet Scan has no correllation to activity of tumor site in body. The test should just be used to spot any site. I still only have two, one being the same sized and the other being smaller. He said this is Stable or Better, too.
So, I am feeling more calm and relaxed now. I see the Pain Specialist on Thursday. I started back on the pain patch which helps. I have a script for physical therapy to see if that will help pull that one pelvis spot where it will not bother me anymore. I will call next week on this one as I need to sew up the bandfront costumes first.
So, life is good. I am hopeful and enjoying each day once more now that my pain is mitigated. Thank you all for prayers and wishes. Please keep me in yours whenever you remember. I would like to be stable long enough to get to use the vaccine. It is not available anywhere yet, and I have no idea how long it will take for FDA approval. There is always the hope of something new around the corner. If I can get two more years, even the Kanzius machine will be ready for testing on humans. So many good things to look forward to in medical care.
May you all be blessed with excellent health. I wil be praying for each of you to thank you for all your support. Love you, ladies.
Country girl in NE PA |
| 25 L A T E S T R E P L I E S (Newest First) |
| vintagegrl |
Posted - Aug 28 2008 : 5:03:19 PM
Hallelujah!!!! Best news I've heard ALL month. Though I've been missing from the forum for a few months, I've been thinking about you. This is huge, I'm so happy for you. |
| ktknits |
Posted - Aug 28 2008 : 09:13:23 AM
Clare, sending prayers for healing and peace your way!
I know the ups and downs are as frustrating as they can be, but just stay focused on getting better.
Just like Steph, and all the others--Love and Hugs to you!
Kathy T
http://ktknits.blogspot.com |
| queenofdreamsz4u |
Posted - Aug 19 2008 : 11:57:35 PM
Clare, this is good news indeed. Some docs don't have much of a bedside manner but are excellent in their fields..It would be so nice if they would all recognise the importance of a holistic approach. Mind, body and spirit all work together for the common good..
As always you are in my thoughts and prayers,
Hugs, Steph
Stephanie
www.queenofdreamsz.blogspot.com ~~~Crochet, Sewing, Life Collections & Recollections Blog
www.dreamkingdomdesigns.blogspot.com Vintage & Modern Fabric, Fiber & Yarn Blog
www.dreamkingdomdesigns.com ~~~~~Go Shopping at my Website Catalog!! |
| mommom |
Posted - Aug 18 2008 : 2:16:37 PM
Praise the Lord! I'll keep praying! Susan |
| dutchy |
Posted - Aug 18 2008 : 12:23:11 AM
Praying for you.
(Only Elvis is a black kitten :) )
http://princess-of-pink-creations.blogspot.com/
my new BLOG
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| Carol Sue |
Posted - Aug 18 2008 : 12:12:10 AM
One more hurdle jumped through Clare with decisive answers that you needed to go onto the next step. Glad that you were listened to and some answers that you had to have.
Hugs and proud of you girl!!!!!
cs
listening to the quiet moments
Farmgirl #39
www.Quitemoments.blogspot.com |
| Alee |
Posted - Aug 17 2008 : 8:15:20 PM
Clare- that is so good! I am so happy that things are looking up! Keep thinking positive! I know you will beat this!
Alee
Farmgirl Sister #8
www.awarmheart.com
Please come visit Nora and me on our new blog:
www.farmgirlalee.blogspot.com
Put your pin on the farmgirl map! www.farmgirlmap.blogspot.com |
| electricdunce |
Posted - Aug 17 2008 : 5:47:57 PM
Wonderful news Clare! You must be feeling so much better now that you know your doctor's position on your treatment. I know some doctors seem aggressive about treatment, especially when they really care for their patients. You are the one in charge here and certainly have the right to naysay anything you don't feel comfortable with. It is good that you spoke with another doctor. Communication is so important. All the farmgirls here are bombarding you with love and prayers. You are doing a wonderful job taking care of yourself, carry on
Karin
Farmgirl Sister #153
"Give me shelter from the storm" - Bob Dylan
http://moodranch.blogspot.com
http://domesticnonsense.etsy.com |
| Kathie |
Posted - Aug 15 2008 : 07:58:38 AM
Good For You Clare!
Your Strength, Will & Belief's are what making all this possible..
& will also be what continues to allow you to do everything you need still to get through this.
You have SO Many People that love & Support you from all over..
You know we're all right here.. not behind you..
But beside you ,holding on with you Sweet Sister!
Just keep doing what you do.. which is being You!
Love you so very much,
Kathie
Kathie..
Farm Girl Sister #29
"In a World Where You Can Be Anything, Be Yourself.."
www.nitegardener.blogspot.com
www.NitegardenerLite.blogspot.com
http://www.nitegardener.etsy.com/
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| jennym |
Posted - Aug 15 2008 : 05:10:04 AM
Clare-
You sound like an incredible person! I think it's really great that you are being so proactive and taking an active role in your treatment. My prayers are with you, your husband, and your children everyday.
With lots of prayers and hugs,
Jenny
Be still and know that I am God. Psalm 46:10 |
| Nance in France |
Posted - Aug 15 2008 : 02:43:24 AM
Clare, high five to you! When it comes right down to it, we are usually the best judge of what needs to be done for ourselves. Years back I found an old "calling card" with this written on it and it applies to everyone. "Love many, trust few, and always paddle your own canoe"! Hugs, we are all here for you. Nance |
| queenofdreamsz4u |
Posted - Aug 15 2008 : 12:37:19 AM
Clare, Thanks so much for the update..as usual you have covered all the important ground. I'm also proud that your family is behind you and the treatments you are researching that are not available in the USA yet. Know that you are surrounded by peace, love and light. You are a courageous soul.
Love and Hugs to you,
Steph
Stephanie
www.queenofdreamsz.blogspot.com ~~~Crochet, Sewing, Life Collections & Recollections Blog
www.dreamkingdomdesigns.blogspot.com Vintage & Modern Fabric, Fiber & Yarn Blog
www.dreamkingdomdesigns.com ~~~~~Go Shopping at my Website Catalog!! |
| Aunt George |
Posted - Aug 14 2008 : 9:00:23 PM
Clare.....Atta girl! You are pushing your way through the tangled medical webs. Keep going girl....do all you can to push your doctors into action. Know that many are holding you up in light, prayer and love and we are surely blessed by learning from your example of love and strength. Peace be with you this night.
G
http://auntgeorgeshouse.blogspot.com/index.html
http://auntgeorge.etsy.com
"Made With Love" |
| joyfulmama |
Posted - Aug 14 2008 : 3:03:10 PM
Clare, I am blessed to know you. I have had a pretty bad day today. Hubby is going through recovery with his drinking and he is taking it out verbally on me. I am just worn out. Then I get on here and see the struggles you are going through. I am thankful for my health.. You are so strong! I wish I could be more like you.. I am praying for you and sending you many hugs.
Blessings, Debra
"Your life is an occasion, Rise to it." Mr Magorium..
http://myvintagehome.com
http://woolieacres.net
http://modernmanna.org
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| nubidane |
Posted - Aug 14 2008 : 2:57:16 PM
Clare You are amazing |
| suzyhomemaker |
Posted - Aug 14 2008 : 11:49:16 AM
Hi, Ladies. It's been a busy day with phone calls, faxing, emailing and researching.
It turns out Lovaxin C is not available in the USA yet. I emailed back to see if and where it is available in another country, Europe maybe? I would travel just for this with support from husband and parents. SO, I am waiting to hear back about this. The company applied for FDA approval. I don't know how long it takes for al lof this to occur.
I spoke with my Patient Representative at MSKCC about switching doctors. I explained that I frustrate my doctor, but that I just can't make a decision based on only a flow chart and her experience. I explained that my doctor felt unable to help me locate a clinical trial or information on them. I told her I really want a compassionate doctor right now. Anyway, it is a whole procedure thing where this lady speaks to my doctor and then gets back in touch with me. I asked about switching to a different doctor, one I have seen quite a few times there, and she said she does not know if she will be taking new patients right now. So, at least that was a load off of my mind.
I also spoke with the nurse for the Pain Specialst about my situation. She spoke to doctor and they are sending me a script for pain patch again until I see him next week. I am looking forward to having my pain relieved once more.
I sent off all my latest tests to the biochemist office and will talk with him on wed.
Until then I just have to do the money thing and plan on at least 4 more Avastin treatments followed by another PET Scan. I have one more doctor to call at Sloan, the gyn onc. I will call him tomorrow to see what he has to say.
Oh, I contacted about clinical trials. I read some on line, but then I called the number the Patient Representative at MSKCC gave me. So, tomorrow I should ahve an email with all of that information.
yes, I am seeing a naturopath. I saw him last in early July, and he was impressed that my body was functioning so much better than in April. Not much for him to add except this protein stuff called Ave. I had to stop taking it beacuse of stomach issues, but I will try again next week.
I think a lot of stomach issue was pain related as it has eased with some pain medicaiton. I tend to get sick with pain. Some was stress related as well. I am always working on that one!!! Hubby has been helping this week so that has relieved it.
I can't thank you enough for the prayers. I feel blessed to "know" you ladies from this forum. I am just an ordinary country girl like most of you. You never know what will happen in your life, and you just reach deep and ask for God to help you through the journey. I hope none of you have this path to travel. I wish you all pleasant days of love and joy with family, friends, a good job, a home to call your own, work and hobbies that bring you pleasure, fresh air and sunshine, flowers and birdsong.
Clare
Country girl in NE PA |
| joyfulmama |
Posted - Aug 14 2008 : 07:38:28 AM
sending hugs your way!
Blessings, Debra
"Your life is an occasion, Rise to it." Mr Magorium..
http://myvintagehome.com
http://woolieacres.net
http://modernmanna.org
|
| Annika |
Posted - Aug 14 2008 : 07:06:22 AM
Bless you Clare. You must do what you feel is right for your body. I am glad that you are not laying down and going along meekly. I'm with you all the way and applaud you getting a new doctor, I hope you find a good one to work with and that you see good progress soon
Praying for you and your family
Take care sweet sister
Annika
Farmgirl sister #13
Mud Hen Queen
http://innermountainmudhens.wordpress.com/
http://panzymoon.wordpress.com/
http://panzymoonsgarden.blogspot.com/ |
| Alee |
Posted - Aug 14 2008 : 06:56:57 AM
Clare- I will continue to pray for your health and for the right doctors to come your way!
Alee
Farmgirl Sister #8
www.awarmheart.com
Please come visit Nora and me on our new blog:
www.farmgirlalee.blogspot.com |
| katie-ell |
Posted - Aug 14 2008 : 05:22:49 AM
Bless you today. Peaceful sleep tonight. Strength and joy each day.
www.youaretoocreative.blogspot.com |
| Leezard |
Posted - Aug 14 2008 : 05:11:12 AM
Clare, you are such a blessing! You have such a spirit and faith that is shown in your words and I am glad to be reading them because they inspire me in my own life. I don't know if you've considered checking out a naturopath for support for what's going on with your body with the treatments you're having but if it's something you would consider you can check out http://www.naturopathic.org/index.php or http://www.pandamedicine.com/ to see if you can find one in your area.
Jehovah-Rophe, please place your healing hands on Clare! You know her body inside and out and I believe that you are in this situation she is going through right now guiding the medical professionals and guiding Clare in the direction she should go with her treatment. Bless her for her strong spirit and faithfulness to you through this time. Wrap your loving arms around her family as they are going through this with her. Give them all peace and comfort! Help them to see you in their lives and to know that you are there always.
In loving thanfulness, as you wish!
http://ruby--slippers.blogspot.com/
www.leezard.etsy.com |
| Carol Sue |
Posted - Aug 14 2008 : 02:43:45 AM
Clare,
And the battle wages on. You never give up because others believe you should. You fight on, in the midst of great adversity, you continue to fight on. Your life matters, to your family, to your friends, to me as one of the farmgirls. Every day is a battle won and in my opinion dear friend, a medal earned.
Yes, will pray for the door to open for a Medical Oncologist who is willing to fight the battle not matter what the odds!!!!!!
For your children to gain wisdom from the battle their mom is fighting, to not lose hope when it doesn't look the way we all want it too. For your husband to have great grace, and a support system for him in the midst of this. And for you, dear sweet friend, peace of mind and heart when all around you the storm is raging. Peace, be still.
listening to the quiet moments
Farmgirl #39
www.Quitemoments.blogspot.com |
| Aunt George |
Posted - Aug 13 2008 : 9:12:25 PM
Clare,
I'm sorry I missed out on your first posting of the PET scans. I read your update and wow girl............you must not roll over and play dead like you are feeling your MD wants you to do. I have dealt with those types of MD's and you must be a strong advocate for yourself. It sounds like you are learning the ropes of navigating the medical waters. Get in touch with the clinical trials nurse in your doctor's practice also. She/He can give you lots of good information about clinical trials if you want to try them. There are so many different requirements to the trials that you will need to qualify for....the clinicians can help you with that. Here is a site that might be of help to you too.
http://www.clinicaltrials.gov/
You can put in your data and search for clinical trials near your home.
You are so very much in my heart and my prayers. Sending loving and healing light your way.
G
http://auntgeorgeshouse.blogspot.com/index.html
http://auntgeorge.etsy.com
"Made With Love" |
| CountryBorn |
Posted - Aug 13 2008 : 9:07:05 PM
Sweet Clare, I think getting another Dr. is the best of ideas.You need to find one who is as determined as you are to beat this. You fight with all you have got,you never know when the perfect course of treatment for you will appear. I know God will be taking every step with you, you will have the courage and the conviction to fight this. All of us here are always thinking of you and praying for your good health. You are one remarkable woman sweet Clare, you can teach all of us alot about staying positive and focused no matter what the problem. We love you and admire your courage.
MJ
There can be no happiness if the things we believe in are different from the things we do. Freya Stark |
| DeepsouthMamma |
Posted - Aug 13 2008 : 8:49:44 PM
What a gentle spirited fighter you are!!! I don't have any special words of wisdom ... I know I don't fully grasp what it must be like to be in your shoes...but I can tell you from here that you are an amazing testimony to the power of God to supply grace in the time of need.
Do you know what a gift you have given everyone here, simply by being so graceful & gentle yet fiercely valiant?
I have peeked into a window of a soul that is in the midst of a battle and it has made me better!
Thank you!
God speed ,Clare!
Blessings,
Autumn
Farmgirl #49
http://simplytoday-autumn.blogspot.com/
Isaiah 40:31
But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint. |
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