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Shingles and increased CA-125

dgrdalton's picture
dgrdalton
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Joined: Jun 2017

I am almost 2 years NED from surgery. I was Stage 1A, grade 3 with less than 50 mm myometrial invasion. Had 3 chemo and 6 brachytherapy.

On 4/12 I started having symptoms f pain in my right pelvic area and feared recurrence. It turned out to be shingles. The rash was from lower back around to pelvic area and down inside right thigh. My oncologist ordered a CA-125 on 5/3 and it is 66.7. My highest before surgery and after treatment was 9.8. I will have a CT scan on 5/13, but am hoping the inflammation from shingles may have caused the increase. 

Has anyone had an increased CA-125 after having shingles?

Thank you!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2597
Joined: Mar 2013

dgrdalton, infections can raise your CA-125 so I hope that is what is going on, however, I am glad they are going to do a CT to find out what is going on.  Please come back and let us know how it is going.  Sending you good thoughts on May 13.

Forherself's picture
Forherself
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My gyne oncologist did not do one, because they are not accurate and give many false positives.  Which cause anxiety and unneeded tests.  I'm sorry to hear you have shingles.  They are very painful, and the fact that you didn't even mention your discomfort reflects the anxiety that these tests cause.   Percentages are also in your favor.  Your recurrence rate should be low with the treatments you had.   I pray that your CT is normal.  And that you recover quickly from those nasty shingles.

dgrdalton's picture
dgrdalton
Posts: 71
Joined: Jun 2017

Your responses are appreciated! I did neglect to say my cancer was UPSC which is similar in structure to ovarian cancer. I think that’s why they do the CA-125. Also, if the CT scan is clear then she can do another CA-125 in a month or so to see if it has gone back down. Will post again Monday!

dgrdalton's picture
dgrdalton
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My CT & pelvic exam showed me to be still NED! She will repeat the CA-125 in 8 weeks to be sure, but suspects the inflammation of the shingles caused the increase.

Forherself's picture
Forherself
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Joined: Jan 2019

We all know the feeling of waiting for results.   Now you can get over your shingles!

dgrdalton's picture
dgrdalton
Posts: 71
Joined: Jun 2017

My ca-125 was 14.3 just before surgery May 3, 2017. Shingles started 4/12/19 and lasted about a month before pain & itching were gone. CA-125 was 66.7 on 5/3/19. Then on 7/5/19 it had increased to 93.6 and I’m having pain in pelvic area, not constant, but sometimes requiring Tylenol and that just dulls it. Oncologist wants me to have a PET scan which is scheduled for 7/30/19. So I’m back to the waiting and wondering game. Mostly I’m not worried, but then the anxiety sneaks up on me.

cmb's picture
cmb
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You've really been on a roller coaster the past few months. Keeping my fingers, toes and whatever parts still move, crossed so that you get good news after the 30th.

MAbound
Posts: 875
Joined: Jun 2016

I don't know how anyone every escapes the anxiety that comes with this diagnosis. Knowing that it's a normal part of it all just doesn't help, especially when something is a bit off and needs to be checked out. Hopefully, that darn shingles is at the bottom of this for you and you'll get a big "Whew!" after your PET scan! You've got a long week or two ahead of you. My sympathies!

Forherself's picture
Forherself
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can cause pain for months after the rash disappears.  Hopefully that is what is causing the inflammation.  It is so hard to wait with all the possibilities. I pray that you get good news.  I'm glad it is a PET this time.

 

BluebirdOne's picture
BluebirdOne
Posts: 198
Joined: Jul 2018

Hope everything goes well.

The newest anti-shingles vaccine is available. I had the old one a few years back and was able to get the two innoculations of the newest variety. Especially those of us who had chicken pox as children this is very important. Because I am a cancer patient I was able to jump to the head of the line as there was a limited supply last fall. 

Denise 

dgrdalton's picture
dgrdalton
Posts: 71
Joined: Jun 2017

The PET scan did show activity in some lymph nodes around my thorax, chest and abdomen. I go see the oncologist on Monday to find out more.

Thank you for being here for me!

MAbound
Posts: 875
Joined: Jun 2016

Pain in your pelvis, but PET scan lighting up elsewhere... maybe the shingles happening is catching something early for you? I'm still hoping that this is shingles related, but if not, (D**n!) that it's early enough to stop it in it's tracks. I'm so sorry; these conflicting results can't be helping your anxiety levels. It will be interesting to see what your oncologist's take on all of this will be. Hang in there! (Easy for me to say, eh?! But hang in there!)

Forherself's picture
Forherself
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But this has been going on for a long time.  I suspect the oncologist will be doing a biopsy and you will finally get an snwer. Prayers for a good outcome.  Hard to wait all weekend.  Keep busy.  I made flannel pillow cases while wating for my pathology.  I twas easy and people loved getting them.  Prayers for a clear biopsy.

 

 

NoTimeForCancer's picture
NoTimeForCancer
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dgrdalton, keep us posted!  

dgrdalton's picture
dgrdalton
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Thank you for responding. This will be a busy weekend. My 3 youngest granddaughters will be here for a little birthday party for the 4th birthday of the one turning 4. The other two are 6 & 8. The older 2 live near me and the younger 600 miles away, so they really enjoy their plat times together. 

I do feel less anxiety just knowing that Monday my oncologist will have a plan for me. My job is to try and put it in God’s hands and enjoy the present. 

Appreciate all you ladies!

Donna

TeddyandBears_Mom's picture
TeddyandBears_Mom
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Donna, So glad you will have a busy weekend with family. I hope the news is better than you expect it to be on Monday! Please come back and let us know when you can.

Love and Hugs,

Cindi

dgrdalton's picture
dgrdalton
Posts: 71
Joined: Jun 2017

My oncologist said the lymph nodes that lit up were about a 7, not very bright. And UPSC would usually not reccur in the thorax, chest and abdomen lymph nodes. They drew blood for a CA-125. It came back 81.4, down from 93.6 a month ago. I am scheduled for a biopsy on the largest lymph node that lit up. That will be next Tuesday. She said infection and inflammation can cause the lymph nodes to light up. I am feeling much less anxiety!

Forherself's picture
Forherself
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That is great news.  It is so hard to wait.  But it is most likely going to be ok.   I'm glad the CA-125 is going down too!

 

MAbound
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Joined: Jun 2016

And shingles is really a doozy of an infection!

TeddyandBears_Mom's picture
TeddyandBears_Mom
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Really great news DG! Please let us know how your biopsy goes.

Love and Hugs,

Cindi

dgrdalton's picture
dgrdalton
Posts: 71
Joined: Jun 2017

My oncologist called this evening to let me know the lymph node biopsy showed UPSC cells. She wants me to start chemo again. I had 3 rounds of taxol/Carbo before so she said it should be effective to use again. The nurses will get everything set up and call me tomorrow. I do feel less anxiety knowing what’s going on and having a plan than being in that in-between not knowing. I know pretty well what to expect as far as side effects, so I’m ready to start the fight again.

Thank you ladies for being here!

Donna

Armywife's picture
Armywife
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Your positive attitude is so inspiring.  We are here for you!  Go get 'em!

 

Forherself's picture
Forherself
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at least now you can get going on treatment.   UPSC is so upredictable.   Give it all you've got.  We are here for you.

Hugs to you.   

zsazsa1
Posts: 347
Joined: Oct 2018

This darned disease.  I'm hopeful that you'll respond to the carboplatin/taxol combination - it's been two years, so it should be effective.  You should ask for them to test the tumor for her2/neu status - it may be appropriate to add herceptin.  It was recently shown to double remission time in Stage III/IV UPSC, so if your tumor cells have the receptors for it, it would likely help.  For me, it has had no side effects.

dgrdalton's picture
dgrdalton
Posts: 71
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Thank you! I will ask my oncologist about that. 

And I do appreciate all suggestions for things I need to learn or ask about now.

Donna

MAbound
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Joined: Jun 2016

Well, it was disappointing to wake up to this, this morning. Hopefully because of the shingles, it's been caught early enough to beat it back quickly for you. I hate the thought of you having to go through chemo again (or anyone for that matter). UPSC is such a stubborn bas***d!

TeddyandBears_Mom's picture
TeddyandBears_Mom
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 Donna, so sorry for this news. This is such a hateful cancer! I'm glad they caught it early and hopeful chemo will take care of it. Your head is in the right place and you know we will be here for you throughout your treatments. Please keep in touch.

Love and Hugs,

Cindi

cmb's picture
cmb
Posts: 385
Joined: Jan 2018

Well, if there was ever a positive side of getting shingles I guess the early detection of your recurrence is it. But I'm still sorry to learn that you must start chemo again, although as you said, you know what to expect now. Testing the cancer cells, as has been suggested, is a very good idea so that you and your doctor understand all the options available.

NoTimeForCancer's picture
NoTimeForCancer
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Dang it, Donna.  I'm sorry to hear this news.  I'm glad your doctor didn't play a 'wait and see' game and got in to check it out so you can get on top of it.  Please keep us posted.

 

dgrdalton's picture
dgrdalton
Posts: 71
Joined: Jun 2017

We live 212 miles from my oncologist. This coming Monday I get prelabs and my port put in. Then chemo starts on 8/29. I do have the best chemo nurses! But before all this, on the 22nd, my husband and I are taking the two granddaughters (ages 6 & 8) to Discovery Park of America in Union City, Tennessee for an all day fun trip!

Thanks for being here! Donna

zsazsa1
Posts: 347
Joined: Oct 2018

212 miles from the oncologist!  That's rough - not easy to make that drive (or ride) when going through treatment.  I'm hoping that your infusion center is closer?

dgrdalton's picture
dgrdalton
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Joined: Jun 2017

We (my husband drives me) make the trip from SE Missouri to St. Louis because my first and closer GYN/onc couldn’t decide if I needed chemo or observation. He also made a few comments concerning his decisions and then denied saying them. So 5 months after my surgery, we sought a second opinion as I was concerned about observation only. Barnes in St. Louis was ranked in the top 15 cancer centers. My new GYN/onc got me set up for chemo and brachytherapy. The drive is not bad after you make it a few times. We have relatives we can stay with if needed. 

zsazsa1
Posts: 347
Joined: Oct 2018

I just edited my comment from the D word to darned.  I just didn't want anyone who came across it to think that I was foul-mouthed!  I never thought of the D word as being controversial.

dgrdalton's picture
dgrdalton
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I read it before it was censored and didn’t think anything of it. 

NoTimeForCancer's picture
NoTimeForCancer
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I agree about great chemo nurses!  They are the ones who are with you there - giving you your juice.  I kept a list of all the nurses who helped in my chemo and then I went and bought a Caswell Massey bar of soap for each of them.  A little expensive, but after it was over I stopped up with a name tag tied to each one.  They were angels.

Keep us posted, Donna.

dgrdalton's picture
dgrdalton
Posts: 71
Joined: Jun 2017

My first chemo was on a day when my oncologist was not at that clinic, so I decided to wait to post until I knew more. That first chemo was harder than I expected. Side effects started on the trip home and lasted about 8-10 days. Yesterday the chemo went much better and I’m still feeling pretty good!

My prognosis: 

Since the cancer is in the lymph nodes, the treatment is chemo and it already seems to be working! The cancer marker (CA-125) went from 78.5 to 39.5 after first treatment. I will get a a CT scan after the 3rd chemo and then probably 3 more rounds of chemo.

Dr. Hagemann, my gynecologic/oncologist is having molecular genetic studies done on my original tumor to find out if I have HER2/neu genetic marker. If so then I can take Herpecetin (This is a monoclonal antibody, which is a man-made version of a very specific immune system protein.) This could help me stay cancer free longer.

The down side is that even if we beat it again, this cancer will come back. The uterine serous cancer is very similar to the ovarian serous cancer, a very sneaky aggressive cancer.

So my mind set now is to think of this as a chronic illness and try to live my life the best I can. I’m sure my thinking will change often :-)

I need you ladies now more than ever! Thank you for being here!

cmb's picture
cmb
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Joined: Jan 2018

I'm glad the latest infusion wasn't as tough as the first one, at least not right away. Feeling bad for 212 miles on the return trip home must have been very difficult. Also glad that your doctor is doing the tumor testing. That will help for any future treatment that may be necesary.

I hope this last treatment and the next one continue to work well for you so that your next scan shows good results.

Forherself's picture
Forherself
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I am glad to read you are having this done.  It is sounding more like they are going to change the classification of endometrial cancer based on genetic testing.  They can better predict treatment   I think a chronic illness is a good way to think of this.  And the more the treatment is tailored to your specific markers the better it will work.  They are learning so much right now.  And I think endometrial cancer is finally getting some attention.   Hang in there.  We are all here for you.  Prayers for a long NED after you treatment.

dgrdalton's picture
dgrdalton
Posts: 71
Joined: Jun 2017

No Time For Cancer, I found it interesting that you gave soap to your chemo nurses. One of my hobbies is making goat milk soap. My chemo nurses got some of my homemade soap after my frontline treatment. I’ve already made some lavender soap to have ready to give them for Christmas this year! They are jewels!

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

i only use goat milk soap. It doesn't leave a tacky residue on my skin like commercial stuff does. Gotta stock up for winter from my  farmers market vendor tomorrow. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2597
Joined: Mar 2013

dgrdalton, I figured they got enough sweets and goodies, but how incredible that your nurses are getting a handcrafted soap!  That is incredible.

dgrdalton's picture
dgrdalton
Posts: 71
Joined: Jun 2017

Goat milk soap is wonderful to your skin and giving it away is such a pleasure. 

I started taking concentrated tart cherry in capsules; one in the morning with my vitamins and minerals that the oncologist wants me to take. My joint & muscle pain has been noticeably less. This round has been easier on me. So thankful. 

Armywife's picture
Armywife
Posts: 320
Joined: Feb 2018

Where do you get your tart cherry capsules?  My husband and I could both benefit from some joint  pain relief!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2597
Joined: Mar 2013

Armywife, I wondered the same thing on the tart cherry capsules?  My sister had told me about tart cherry juice - I didn't know they made it in a capsule.

dgrdalton's picture
dgrdalton
Posts: 71
Joined: Jun 2017

Ordered from Amazon; brand is Bronson Nutrition+ Tart Cherry extract 2500 mg. My brother told me about the capsules. I didn’t want to take the juice because I try to watch my sugar intake.

dgrdalton's picture
dgrdalton
Posts: 71
Joined: Jun 2017

Chemo is working well. My CA-125 is down to 24.1 after 2nd chemo. We decided to finish the 6 rounds of chemo and then do a CT scan. The 200 mg B6 twice a day has helped with neuropathy and the tart cherry concentrate capsules either the joint/muscle pain. I was Kind of down after having my daughters, SILs, and 3 little granddaughters all last week and then having say buy to head for a treatment. Then we had a fender bender on I270 in St. Louis. No one was hurt, but it was our fault. But my oncologist and chemo nurses are so sweet and I had some nice visits with a couple of ladies getting chemo for much longer than I have. One lady probably 10 years older than me starting chemo for her 5th recurrence of ovarian cancer. No time to feel sorry for me! Mostly I'm positive, but have my moments.

once again I do appreciate and pray for you ladies!

Feelingalone74
Posts: 236
Joined: Jun 2019

Many prayers to u dgrdalton. Good to hear that your body is responding to treatment. so glad u and your husband nor anyone else weren't hurt in the fender bender .

Continued prayers for u! Wishing you well!

Michelle 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1556
Joined: Jun 2015

That is great news! And, it is certainly OK and normal to have some down times. This is a tough journey. The key is to have your moments and get back into a good head space. You are the perfect picture of that.... So happy to see that CA125 number.

Love and Hugs,

Cindi

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

and sympathize over the bad. Your smile is infectious. When your picture pops up, it makes me smile too..

Forherself's picture
Forherself
Posts: 234
Joined: Jan 2019

I'm so glad you have this to share.  Once this diagnosis is made, I think the emotional part of the fight will always be there.  Prayers for a long remission.

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