CSN Login
Members Online: 5

You are here

RO, HAVEN'T HEARD FROM YOU . HOPE ALL IS WELL

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

hi ro.
i had been wondering about your post earlier this month re: rising ca 125, and clear ct scans, but haven't heard from you. don't know if you saw the discussion thread, or just didn't want to respond, or something else. so i wanted to check that everything was ok with you.
sisterhood,maggie

Cindy Bear
Posts: 570
Joined: Jul 2009

Hello. I think I remember this poster (RO) stating she'd be going away for a few weeks. It was a reply to one of Mary Ann's (Daisy) posts.

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

glad to know that all is well.
maggie

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I just returned from a cruise from New York to Canada back to New York (Manhattan). Then we went to Niagara Falls. It was a great trip. Saw some beautiful country. We got to see some beautiful fall color - yellows, reds, and oranges. Niagara Falls is breath-taking. I am so glad I was able to make the trip. I am feeling great.

I read of everyone's side effects from their treatments. I have been lucky not to have the side effects others have talked about. I have a little neuropathy in my right foot after walking about a half an hour or standing for periods of time. When I stop walking or sit down the neuropathy goes away. I never did lose my eyebrows, but still do not have enough eyelashes to use mascara yet. I just use eyeliner.

I go for my next lab test October 12th. Depending on what the lab tests shows will determine if I need a CAT scan or not. You asked if I had a PET scan. I have not. My gyn/ono said insurance does not approve PETs for uterine cancer, but if the CAT scan shows something he will pursue a PET.

You also asked about my rising CA 125's. I finished my last chemo (number 6) in August 09. I had the sandwich treatment with 3 chemos, then radiation (28 external and 28 hours internal), and then 3 more chemo. My lowest CA 125 was 14 during treatments. My first check-up in October 09, the CA 125 was up to 39. I had it rechecked, as I had a colonoscopy that day prior to the lab being drawn, and thought maybe that scewed the results. The recheck nine days later was 42.

We went to Florida (as we winter there) and in November they rechecked it and it was 55. I had it repeated 6 weeks later and it was 77.7. The gyn/ono said he thought I would have to restart treatment within the year. In Feb my CA 125 was 119, and in April it was 140. I had CAT scans every 3 months. One scan showed 3 suspicious areas, but the gyn/ono said different radiologists can read the scan differently. Not sure why this is since it is computerized. All the other CAT scans showed the areas were unchanged.

The gyn/ono also said that some people's CA 125 stabilize around 200's for their new normal. He said he does not treat a number, only if the CAT scan shows something. I am hoping I am one of those with a "high normal".

My June CA 125 was 261.6, which was scary for me. But again the CAT scan was negative. Then in July the number was 222. During the summer I had the CAT scan done with the lab, so they would only have to access my port once. And since the CA 125 continued to rise, they expected I would have to start treatment again.

Since the CA 125 dropped, I will only have lab test drawn, and then if needed have the CAT scan. I am going 3 months this time. The other tests were every 6-8 weeks for lab. The doctor said I could go 6 weeks to 3 months, but if I was going to have to start treatment, I wanted to start it as soon as possible to catch those migrating cancer cells. Now I am more comfortable with waiting 3 months between tests. I am enjoying my "no treatment time."

October 9, 2008 is when I first heard those dreaded "cancer" words, after a PAP test. So I don't know if I am a 2 year survivor, or if you become a survivor after you finish treatment (8/09). Either way I am happy to be a survivor.

I have a lot of posts to catch up on, as I have been gone almost three weeks. Hope everyone is doing well. In peace and caring.

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

i'm so glad you had such a good time on your cruise, sounds wonderful. i've always wanted to see fall colors on the east coast, and hopefully i will.

your ca 125s and the reading of your ct scans seem so erratic, they must drive you nuts. it's great that the ca 125 went down, and you aren't being rushed into treatment. doesn't really sound like your ca 125s are all that trustworthy, however. i also don't understand why your cat scans should be read differently by different radiologists if their computerized????? i'm sure hoping your lab tests on the 12th are low, so you can go another 3 months without treatment. and also hoping your new normal is in the 200s--it's all so crazy and crazy-making. still, if the ct scans remain unchanged, i'd tend to find them much more trustworthy.

i asked my medical onc when to start counting from, when first diagnosed or when finished treatment. she said she counts from when treatment is over, so that means it will be a year for me in november. that's also when i have another ca 125, and depending upon the number (it was about 20 41//2 months ago), i'll have a ct scan. my doctor is appealing the insurance co. denial of a pet scan, so we'll see if she's successful or not. she wants it available, if she thinks i need one. in my last ct scan, i had one slightly enlarged para aortic node, which she thought could be cancer, but the charge nurse thought it was scar tissue, and my acupuncturist does not think i have cancer now. so who the heck knows? i have to say, having a year of no treatment has been a blessing, it's almost like being normal. though, one is never normal again after a cancer diagnosis. still, it's been great, and is going by all-too-quickly.

ro, keep us posted re: tests, etc., on the 12th. we'll be thinking of you.

sisterhood,
maggie

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

It certainly was not the news I wanted. My last CA 125 was 222 (3 months ago), and today it was 449!!!! So needless to say I have a follow-up CAT scan for Friday. I hate it being on Friday because I won't be able to have the results until Monday. They could have done the scan on Thursday afternoon, but I have company coming from St. Louis. My husband tells me "it is just a number", and they do not treat a number, but it is a number I don't like.

He said it makes him wonder if the last test was accurate. I told him I could of had it retested, but then we would not have enjoyed the last three months the waya we did. Our cruise was wonderful. The CAT scan was negative 3 months ago, so we are hoping this one is negative, too. I feel great.......so how can things be going bad?????

The problem is I felt great when the initial diagnosis was made. Oh well nothing to do but wait and see. In peace and caring.

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

ro,
of course you're concerned re: the 125, but your ct scan was negative only 3 months ago, so i'd trust the scan a lot more than the ca 125. and it does mean something to feel great. the numbers of the ca 125s seem pretty crazy to me, given what everyone here has said about theirs, and where it finally settles, if it does, and what the "new normal" is or isn't. i also know how hard it is to wait over a weekend for the results of any test.... just try to relax, and relish how good you're feeling, and how great the cruise was, and how negative the next ct scan will be.

hugs and sisterhood,
maggie

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I'll be thinking of you on Friday. If we learn anything from this cancer journey, it's to LIVE IN THE MOMENT, and I know you know that lesson well. I'm so glad the cruise was wonderful. We're talking about making that same cruise itinerary, since we can drive to NYC and don't even have to fly. We did our Caribbean cruise that way and it was great.

I get my 2nd Doxil infusion tomorrow, and go back Friday for a Nuelasta shot since my nuetrofils were only 1.3 last week when I had my 'nadir' labs that I get between chemo infusions this time. (Doxil infusions are 28 days apart, so I have labs on chemo days and again halfway between chemos). I had a second call from the oncology nurse at Doxil. The drug manufacturer must be doing a study to see if added support allows patients to stay on Doxil longer, since they called me BEFORE my 1st infusion, and also before this infusion to answer any questions about self-care and side effects, etc., and said they'd call me again next week to see how I'm doing. Doxil requires more self-care than any other chemo I've been on, and following the recommendations is really critical with this chemo, I guess.

This will be my last post for a week or so, since I am not supposed to type for 5 to 10 days following the Doxil infusion. But I will stop in and lurk, and post any CA125 news if my finger tips aren't sore. My phone number is on my website if anyone needs me for anything. I am loving how I feel on Doxil (no fatigue! eyelashes again!), so I hope it's working and I don't get the hand/foot thing too bad.

Always Hopeful
Posts: 234
Joined: May 2010

Dear Linda,

I'll be thinking of you tomorrow as you get your 2nd Doxil treatment. It's interesting that Doxil's nurses have called you to follow up on your treatments.

Please be sure to keep up with the after care required to assist in lessening the chance of the side effects.

My eyelashes are also growing again...it's a joyous site...the little things that make us happy!!!

Peace and hope, JJ

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Ro I hope all goes well for your CT Scan on Friday. Linda, I hope this treatment goes as well as the first. We will miss your advice and thoughts for a few days! Enjoy the Pennsylvania fall colors!

Hugs to you both.

Kathy

Always Hopeful
Posts: 234
Joined: May 2010

Dear Ro,

Isn't it a bummer to feel great physically, yet have such emotional stress because of tests? The CA 125 is not a good indicator for me...very low numbers in spite of mets. Let's pray that your situation is the opposite...high numbers and NED!!!

Enjoy your company and good luck tomorrow.

Wishing you much peace this weekend while you are waiting!

Peace and hope, JJ

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Ro, Am so sorry to hear about the rise in your CA125. As we know, that can be an elusive number. Will be thinking of your tomorrow when you have you scan. Know the waiting over the week-end is nerve wracking!

Am so happy that you are feeling good and that you had such a wonderful time on your cruise. Obviously, you are enjoying life to the fullest each day, and that is awesome!

Wishing you the very best!! Big hugs!

Karen

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Sorry to hear of that uptick in your ca125. I've been that route as well. Correlation with the CT though is much more significant and ca125 is certainly not diagnostic on its own. Linda is so right that we must live in the moment and enjoy every day for what we can get from it. Tomorrow, or next week, next month, is always soon enough for worry - definitely not today. Enjoy your weekend, feeling well and delighting in the fall colors. -- Hugs, Annie

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I went to medical records and got my CAT scan results from Friday. The abdomen and pelvis were stable. The chest showed an enlarged paratracheal lymph node that had increased to 2.3cm by 1.3cm. It had been 1.2cm by 0.5cm. Other nodes in the area showed slight increases also.

Don't know what that will mean for treatment. I have a doctor's appointment on Friday afternoon. At least I feel prepared for the appointment, and won't be shocked with the news. I hope she has talked to the doctor in Florida to see what he recommends, too. We are planning on leaving for Florida October 30, so I will get my treatment there.

I knew the time would come for more treatment. I am just thankful for the year I had of "no treatment." My hope is to get this treatment done, and then have another year of "no treatment". In peace and caring.

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

i'm so sorry to hear your nodes have enlarged. did you have just a ct scan, or pet scan too? may i ask how long it was since your last scans? i'll be very interested to hear what treatment is proposed and what you decide upon. i know how you feel re: having this one year post treatment, i feel the same. it's almost like normal. i have scans on the horizon in november, and not looking forward, ca 125 as well. it will have been 6 months since last lab tests and ct scan. my doctor is fighting for a pet scan, but not clear she'll be successful.

in any case, am thinking of ypu, ro, and hoping for the best possible treatment options and many more treatment-free years.

hugs and sisterhood,
maggie

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

and realized some of the questions i had were answered earlier. no pet scan, and scans every 3 months if ca 125 warrants. that's kind of my protocol, which i changed to 6 months, because i just wanted more no treatment time. sometimes it takes a lot just to stay on top of things, not ever really knowing what the right decisions are. maybe with a few enlarged nodes, the treatment won't be too heavy-duty. maybe radiation? cyberknife? i know i'll check out the latter if i'm confronted with similar results.

take care, ro. respond when you feel like it, but do keep us posted overall.

sisterhood,
maggie

Always Hopeful
Posts: 234
Joined: May 2010

I am so sorry to hear about your results. Let's believe that the next step your docs plan will be successful! Good luck on Friday! Look forward to Florida.

My thoughts and prayers are with you.

Peace and hope, JJ

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

She gave me much better news than I had anticipated. She said that the enlarged node was not enough to be concerned about since I have no symptoms. The increase in size was compared to a year ago, so it is a slow process of increasing. She said she was not concerned about the high CA 125 as some people secrete a large amount of this. She recommended another CAT scan in 2 months to see if the node increases more. I will run this recommendation by my gyn/onocologist in Florida. She also said her recommended treatment would be steriotactic radiation to the node, as it would be less toxic to the body.

I asked about a PET scan and she said PET scans do not measure the size of the tumor, it only shows metabolic activity. She said it is better to follow with CAT scans.

I will be happy if I can have another two months being treatment free. In peace and caring.

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

i'm so glad to hear the enlarged node not enough to be concerned about, and is slow growing. also, that a higher ca 125 is not anything urgent. good news indeed. what is steriotactic radiation? do you have to even have that, at this point? the reason my medical oncologist wants a pet scan combined with ct scan is so we can see if there is anything there, and if so, if there is metabolic activity. that's why she favors the combination.

sure hope you get at least another 2 months treatment free. hope your gyn onc in florida goes agrees with your doctor here. please let us know.

sisterhood,
maggie

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

It sounds like you have a good plan. Will be interested to see what you Dr. in Florida says about the plan.

A couple more months without treatment is certainly welcomed, I am sure! That should get you through the Holidays for sure....and hopefully many more years treatment free too!

Wishing you the very best!!

Karen

Always Hopeful
Posts: 234
Joined: May 2010

Great news, Ro! No treatment required now is wonderful! Is steriotactic radiation the type that is often called "bloodless surgery", originally used for brain tumors?

Peace and hope, JJ

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

My oncologist originally ordered a CT scan last November (2009) when my CA125 spiked up to 155. When the scan showed enlarged lymph nodes, he then ordered at PET scan to see if the nodes had metabolic activity. When the nodes lit up on the PET, we started chemo right away. So I'm thinking if Ro were my onc's patient, she'd be getting a PET scan now, as they are over 90% accurate at diagnosing metastisis once the tumor is larger than 1 cm.

That being said, I wonder if the rush to chemo has any real benefit long-term. I'm not all that sure that it does. I am grateful that I had so few side affects from chemo or I might put up more of a fight when my oncologist wants me back in chemo. I think of how wonderful it would have been to have the past year OUT of treatment instead of IN treatment almost all year. I hope your Florida oncologist also lets you just be monitored for awhile longer, Ro. Enjoy that sunshine!

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

Dear Ro,

Sounds like you had a wonderful vacation. You look so vibrant in your picture.

I think CA-125 is the strangest tumor marker. I read a women with ovarian had 3500 and that went down, zoom! to normal with a few chemo's. Sometimes I wonder what we really know about it. I wonder if normal is really normal and what high really is. I don't panic anymore when it goes up. When I had my recurrance my CA-125 went from 7-14. Then I think 20 something and then 40. She did a PET and there was peritoneal carcinamatosis and I could really feel the pain. Actually, the pain warned me more than the tumor markers did. It went up to I think 80 or 90 before doxil brought it down. I'm with you Linda, We need a better marker so we don't have to have chemo when we don't need it! Of course, I feel that way facing doxil next week and my hair thinning from the carbo. . I am afraid to try the curling iron. I have done the lost hair several times so I feel like it shouldn't bother me now. I think the entire year has hit me today and I am tired. Had those tears for a while and then felt better. Planted tulips and pansies and that felt great. Where is Connie when I need a Warrior whipping?
Glad you are back with your smiling face Ro. You give me a lift!

Diane

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Have a wonderful trip to Florida!

Laurie

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

He agrees to repeat the scan in 2 months. I will have lab and CAT scan the week of Dec 13 and see him on Dec 21. I am glad that he agrees. He has always told me he does not treat a number.

With my outbreak of shingles (see other post).....I wonder if that affected the number. I know inflammation or infection can falsely raise the marker. I read (on the internet)that the lymph nodes can increase before the outbreak of the rash. I know I am probably reaching, but I will keep that in mind until the next lab draw, and enjoy these next 6 weeks without treatment.

I am having two more skin cancers removed in the next two weeks. I will have the MOHS surgery as they are on the face and neck. Have any others who are out of treatment gone for a dermatology check? I had 4 areas that needed surgery. All occured after I finished chemo.

Other than the symptoms from the shingles, I am doing great. Hope everyone is doing okay, too. You all remain in my prayers everynight. In peace and caring.

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Hi Ro,

I am happy that your Florida Dr. agrees with the plan. Enjoy the next 6 weeks to the fullest! Am hoping that the changes you experienced were due to the Shingles. I think that is certainly possible. BUT, what a bummer....SHINGLES! Hope you got on medicine very fast as that really decreases the length of time they last and the pain! Know from experience that pain can be awful!!

Interesting about the skin cancer since chemo. I had never thought about that! What changes in your skin did you notice? I don't know what MOHS surgery is, so you will have to educate me!

Best wishes to you always! You are an amazing lady!!

Karen

Subscribe to Comments for "RO,  HAVEN'T HEARD FROM YOU . HOPE ALL IS WELL"