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My first day looking for answers...

nickelle33
  • By nickelle33
  • Posted March 4, 2009 at 1:25 am · 19 replies
  • Shared with the public
0 Recommendations

I found this site hoping to find people like me and my mom. I am trying to be positive, but I am so scared this time. I have no idea what I would do with out my mom. She is my best friend. Who will I call with good news, bad news, new news, funny news??? I love her so much hope I can find her better help. She has put up such a good hard fight, and I am afraid she is feeling as if this is her end because of it being her 3rd time. She is so young and strong that I hope she can stay positive and know she is surrounded by so many people who love her. She got not great news that her C125 is at 1500 and we know that is high but how high is that?

Explore topics in this journal entry and replies:

Cancer Taxol Surgery Hysterectomy Falls Breast cancer Ovarian cancer

19 replies

Fireball

I'm no expert but I believe your Ca125 should be below 35. Also anything can set it off. Colds for example. She needs to talk with her doctor. I hope everything goes ok. Are you being monitored too? Since your mom has had OVC you might have a marker too.

capechic

What I can tell you is that my CA-125 was 1154 before surgery and my tumor was 13cm in diameter. But I do not know if the CA-125 marker relates only to the size of the tumor or it can also be related to the amount of OC cells in the whole body.
You are very lucky to have such a great relationship with your mom!

Terrafly

Hi Nickelle

Its hard to say without knowing what your mums count was when she was first diagnosed and then what it was after her first treatment (and/or surgery), as its seems different peoples levels are different.

My count at the moment is about 1400 (my first relapse) and I have a 2cm tumor in my aortic lymph gland which is classed as a low tumor volume.

You dont say how long your mum was in remission before her count has risen this time and by the sounds of it she is a fit lady, and so there is every chance that she can do it again :).

Unfortunately it is common for this cancer to come back after chemo treatment and her doctor will be looking at different ways to try to slow the cancer down.

I know how hard it is to live with this (I lost my mother in 2006) but there is always hope and plenty of stories of women who have many treatments and live on many years. You may have seen people mention that this is a 'chronic' disease and thats how you should look at it.

Also as Fireball has said you need to check that this isnt inherited in the family, e.g has other members in your family had this illness ? This is very important in making sure that you're not next.

My thoughts are with you and your mum......stay positive it by no means means that this is the end


Terrafly

x

katelynsmamaw

First of all, sorry about your mom. How does her numbers compare with her other recurrences? That could kind of give you something to go by. The normal range in 35. Please don't forget to keep an eye on yourself too. This disease is sneaky. But I want you to know that we all are here for you and will help you through this. It might be comforting to your mom if she would join this site , too. There are so many good people out here in the same boat and its wonderful to have someone to talk to about it that truly understands. Just remember, we're here for both of you. Sounds like you guys have a wonderful relationship. Take care-

hinsopa

I am so sorry you and your mom are going through this. I have a 21 year old daughter and she has been such a support for me.
Although, a high # most certainly is not good, when a person has relapsed, the trend of the number is what is really important. For example, I know someone that had #s in the single digits but had significant disease when she recurred. This is confusing.
Has your mom gone for a second opinion? I'd suggest that she consider that.

To see if her cancer was hereditary, she will need to ask her doctor to send her for genetic testing. This is a blood test. You do not need to do any testing first. If hers comes back negative, then you would not be at risk. If it is positive, that is when you would have the test.
God Bless you both.

FavoriteAunt

I too am sorry your mom has to battle this disease. She is blessed to have such a loving, wonderful daughter.

CA-125 numbers have a very large range. Some people are just in double digits, some in the hundreds, and some in the thousands. It's a personal count and each body produces a different amount. Just because it is in the thousands does not mean it is worse than someone with double digits. As you may have read from some posts, there are women who have very low readings but still show presence of cancer on their scans. So, don't be alarmed only because that sounds like a high number.

I don't know what stage your mom is or how long she's been fighting, but both of you should never give up. This is also the 3rd time for me (second recurrence) and I'm being treated again. There are many chemo combos available and I would think her oncologist will present options to her. Yes, it is a sneaky disease that we just can't seem to get rid of. Most of us hope for a long remission, despite knowing recurrences can occur. I was dx 3C and after initial surgery/chemo got a surprising 6 year remission. Good things can happen, even if they turn out to be temporary.

If your mom has such a great attitude, then you be like her. Being positive and having strong, loving support can make a huge difference for a patient - it gives you confidence to try to get some control over this disease and helps you make better decisions. And please take care of yourself too. Please let us know how things are going. This is a wonderful group of ladies who genuinely care about everyone and have lots of experiences to share.

mawmaw4

Hi, I had ovarian cancer dx last summer, the ca-125 was 52, onc didn't think I had cancer until he did hysterectomy. So, I think it is sometimes reliable and sometimes not. But 1500 seems high to me. Best of everything to you and your mom as you work through another bump in the road.
Bev

nickelle33

Wow, thank you all so much. I got up this morning after sitting up for hours crying to see such a warm response. I called my mom this morning to tell her about this site and that she needs to join so she can chat with women in her same situation. There is a big comfort there I believe.
Here is the whole story because I left a lot out...my mother Nancy was diagnosed in early 2004. She was stage 3 or 4 and was taken to Mayo and had surgery. They felt they removed everything then she had chemo for 8 times for 6 hours every 3 weeks. it then cam e back in early 2005 in her in tissue I believe, but never attached to any major organs. She then went to Mayo for her second surgery and radiations for 6 weeks. 2006 and 2007 cancer free. Then here is the kicker. She was doing so well. Her doctor at Mayo called in January 2008 and said the cancer was back and they needed to operate again...she was really afraid to have another surgery and we all thought they should biopsy, but the doctor said he didn't want to put her through all of that. We drove her the 9 hours and she had her surgery. Come to find out that there was no cancer it was a radiation burn!!!!! We were pretty upset as you can imagine. Then after surgery the doctor tells us there was an accident and he nicked her bowl, but it should be ok...it wan't ok. A few days after surgery my mom got a life threatening infection and was in really bad shape...I flew to MN and called the rest of our family to be on stand by because we were not sure what was going to happen. The doctors got the infection under control and my mom was in the hospital another 4 weeks. They then told us because of their mistake my mother will be in operatable from now. They sent her home with wound open to heal from inside out. For the last year my mom has been sick almost everyday and had all kinds of bladder issues and had to have a tube put in. So, in Jan of this year when she was diagnosed again it was devastating because she feels so terrible anyway that everyday is bad. She has a few good, but I am concerned about her spirit. They have now put her on chemo for good and she has it once a month for 1 and 1/2 hours. It has moved to her lungs and liver and they saw a small spot on her lung months ago and thought it was just a small tumor. I am worried that she is not getting the best treatment and that she didn't have options they just put her on something with no real reasoning or understanding on our part.
Well, that is the whole story. When they started her chemo this time Jan 09 her C125 cell count was 105 now from the Feb 09 C125 count it was 1505, they just took another yesterday and we are waiting. I will keep you posted.
Has anyone had it spread to lungs and liver? How long can people survive that?? Sorry for all the questions, but for years I have had no one to talk to and ask about these things. Thank you so much for the support.

Artemis

Wow! It sounds like the doctors are the reason your mother is having such a hard time. They gave her an unnecessary operation and then injured her! I thought Mayo was supposed to be better than that! I honestly am beginning to think the treatments are more dangerous than the cancer!

Jennali

I am so sorry for all that your mother has had to endure. What a great daughter you are to be right there for her.

It sounds like you need to have a long talk with the doc about the treatments and your mother's condition in general. If she has not already, she can sign a release form that will allow the doctors to discuss her case with you. It sounds to me that you and your mother are not getting the information that you need.

The CA125 is a number we all grab onto, but in reality, it varies a great deal from woman to woman. When I had a great deal of cancer in my belly, my CA125 was 448. Now with my first recurrence, it has risen to 1500. My doc says there is no relationship between the amount of cancer and the readings.

Also, with some chemo drugs, the CA125 rises before it falls. That is the case with Doxil. Is your mom on that?

Have you considered getting a second opinion here?I would think it might bear serious consideration.

(And one of these days, I think you should consult a malpractice attorney, but I am sure that is not front burner right now.)

Please come here anytime you need to vent or ask questions or just talk. We will do whatever we can.

A big hug to you,
Jenn

peridot

Dear Nickelle,
I had a second surgery to enter a vaccine trial at the U of Pennsylvania. After the surgery to remove cancer cells to make a vaccine (which they were unable to do for some reasons with my cells) I, too got an infection in my incision and was sent home to "heal from the inside out." That was in September of 08. After surgery my CA125 was 8000! even though they thought they got most of what was there. It is now March and I still do not feel like I am recovered from that surgery. Oh, and from taking the antibiotics I got a horrible intestinal infection, C.dif.
By Dec. my CA125 was close to 14,000. I have always had high levels of this protein. My doctor put me on Abraxane which is similar to taxol but is mostly new and used for breast cancer. But this seems to be one of the few chemos I have responded to. My Ca125 is coming down, but very slowly. I have not had a scan since September.
My hope is that for your mother they can find a chemo that can keep things under control for her. I am only 48 years old, but after this latest surgery and new chemo, I feel 88. No wonder your mom feels lousy. That is to be expected after what she has been through. You guys hang in there.
Dotti

verlinda

I, too, would go for a second opinion. Sometimes even the best doctors get into a mindset about a particular patient, and a fresh view from a totally different place may be needed.

As someone said, CA125s can vary widely. I would think especially with all the infections your mom has had that her numbers would be up, but I don't know how high they'd need to be to indicate cancer vs. infection.

What is her doctor telling you? I'd ask for all the information possible and question them until you understand everything they're telling you.

I'd also ask what can be done to build up her immune system. Antibiotics as well as chemo really play havoc with our bodies.

Please assure your mom we'd love to hear from her.

Let us know how we can support you both emotionally.

You're in my prayers.

Blessings.

Dodie1

So sorry to read about everything your mom has had to go through, and you too.
The doctor sounds like they really made a big mistake.
As far as CA125, mine has never been in the single digits like a lot of the ladies here. Mine has never been below 28.

Please keep us updated on your mom.

Take care & God Bless

nickelle33

Thank you so much ladies. We got the results of the CA125 tonight and it went from 1500's from Feb 4th treatment to yesterday now it is 1038. I am headed there Friday and I promise to get her all set up so when she is feeling down she can log on and talk to anyone of you to lift her spirits and she will know she is not alone. Bless all of you and I hope for a speedy recovery for you all!!!

xoxo

djwaz184

My mom had breast cancer, it spread to the liver about a month or so after her diagnosis. She lived another 9 years after....

Lot's of hope. So much "new" procedures etc out there, that there is bound to be something that will help.

huggs sent your way for refereing your mom to this group too!

Narniamama

Dear, dear Nickelle33 -
I too am fairly new to this site and I have really been blessed by it already. For those of us with this disease, it is a godsend to find a place where there are others to talk to who "get it." How great it would be for you also to have others in your specific situation who would understand!
Your post caught my eye because my own daughter could have written it. We are best friends and adore each other.
If you would like to talk online with my daughter, Caitlyn, I know she'd be willing. I'll see if I can figure out how to request to be your friend. If this works and you accept, I think we can exchange info like e-mail addresses privately.
No obligation of course. If that would feel too personal, I understand. Meanwhile I will ask my daughter to keep you specifically in her prayers as I know she REALLY "gets it" when it comes to your place in this whole lousy journey!!
You have my best wishes and prayers, too, and so does your lucky mama.
Christina/narniamama

Momschampion

Hi Nickelle,

I too am a daughter on this site, sometimes just looking for answers that are never very clear. I'm sorry for you and you Mom to have to be going through this. I wish I were a smart scientist who had all the cures and answers. My Mom was diagosed 9 1/2 years ago at the age of 54. I was 29 at the time. It was shocking and scary. Over the past 9 years she has had a number of recurrences and surgeries. She's fought each one unbelievably even throught he most difficult times. Her doctor thought she would only live 2 to 3 years at the time of her diagnosis and here she is. This past year as been the worst for us b/c she had another recurrence and the chemo isn't working as good so now she's facing other complications but she's fighting through this too. The CA125 was never a great indicator for my Mom so I can't say anything to that -- her recurrence were always found with a scan. I wish you the best and I pray for you and your Mom. Keep giving her strength and a positive attitude. That's what has been keeping my Mom going through these difficult times.

nickelle33

Thank you ladies. I pray for all of you every night now too! I am going to spend the weekend with my mom and get her on here so she can feel the love and support of you all too! I am open to talking to anyone about this and take it all in. Thank you.

nickelle33

Hi just wanted to check in with you and see how your doing!

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