Mucinous ovarian Cancer

I am so sorry that your wife is in this battle.  While I myself have not been diagnosed with mucinous ovarian cancer, there may be other women on this board who have been and who can respond to you with their personal experience. 

Sending lots of positive thoughts and prayers to you and your wife that the next treatment produces positive results.

Kelly

MrCLINY said:

PET Scan

Ok, so got the PET Scan reading the other day. The Oncologist went over it and the latist blood test. Even though the CA numbers all went up, he did not seemed overly concerned at this time? The scan read. " a focus of intense hypermetabolism in the posterior pelvis with a maximum SUV of 8.5 fused to a loop of small bowel. likely represents a small implant. Also a new focus of intense hypermetabolism with max SUV of 5.4 which correlates with 6x4 mm node, consistent a nodal metastasis. "

Now this does not sound good to me but he has taken my wife off chemo for a couple of months to give her a rest since he feels things do not look to serious. Aways had a good feeling with this doctor but not completely comfortable.

Thanks for you good wishes Kelly

I do not know what the results of the scan mean.  Ask the oncologist to explain more clearly why he believes that things do not look too serious.  If you and your wife still are not completely comfortable, can you get a second opinion from another oncologist?

Kelly

MrCLINY said:

Update

Well it's been awhile and things are ok at this time. Saw the Oncologist the other day and he seems happy with the last blood test. The CA19 & CA125 numbers have been steady for the last two blood test, at 124 and 7. So he is keeping my wife off of chemo for another couple of months to give her a rest. Yet we know there was activity seen on the last PET scan. Wife feels fine just tires fast. THe only problems at this time is her right leg lymphedema ( which she most wrap each night and wear a special stocking all day ). Plus due to a blood clot that was found in her arm, must take a shot each morning of a blood thinner. Even with all that she is happy to be off chemo for awhile. I'm the only one worried since she does not like to talk about what could be going on, so we don't. 

Wish I had a hubby, but then, I would only want one like you who is out there reading, looking, and asking the questions! 

You can only get so much chemo in your life, so a break with hopes that she doesn't have to go back to it might be a good approach. 

Not familiar with a CA19 - but I am going to look for it now.  How often does your wife see the gyn/onc?  Every 3 months? 

MrCLINY said:

Ascities and Pleural Effusion

While it seems Joann has developed both ascites of the abdomen and Pleural Effusion of the lung. Both being malignant. She had 2 liters removed the other day from the abdomen. While she is feeling fine ( except for her lymphedema of right leg ) her CA19.9 & CA125 numbers have started to go up. Her Oncologist has even suggested that we try Avastin again. Since she had such a bad reaction to it last time, it sounds almost like he is out of ideas and this is a last ditch effort. The chemo, Doxil can cause heart trouble and so can Avastin, both at the same time worries me. It is up to Jo if she's going to try it but I just don't know. I guess need to just trust in the Doctor and God.

MrCliny I am really sorry for your wife. She shouldn't have to go through this. No one should. Have you tried asking another doctor? A second opinion may help you more than you think..

MrCLINY said:

Happy New Year ??

Well, as to talking to a second Doctor, Jo has had two Ongologist since almost day one. Since the cancer is of a mucinous type, her Ovarian Ongologist brought in a very highly thought of colon Ongologist ( since most colon cancers are mucinous ). In fact for most of Jo's treatments he was in the lead. That is till his including avastin in the chemo and I almost lost her. Than he wanted Jo to have HEPIC surgery. When we desided it was to radical, he dropped her as a patient. The other day ( New Years eve ) one of the nurses from the hospital called to check on Jo and remind her about this weeks doctors appointment. She also told Jo her marker numbers have tripled. Kind of put a Happy New Year in the dumps for Jo. So we are going in Monday to see the Ongologist and see where do we go from here. Thank you for your interest and support.

At Memorial Sloan Kettering, in NYC, they do a different Intraperitoneal chemo for the mucinous tumors - I had it for my appendix cancer (which was found on my ovary, and is commonly misdiagnosed as ovarian cancer.)  At 7+ years out from a Stage 4 dx, I am doing great.

I don't know where you are, if MSK is an option, but that might be worth considering.  PM me if you have questions - I don't follow these boards as much any more (but do get notified if there is a Private Message.)

Alice

MrCLINY said:

Happy New Year ??

Well, as to talking to a second Doctor, Jo has had two Ongologist since almost day one. Since the cancer is of a mucinous type, her Ovarian Ongologist brought in a very highly thought of colon Ongologist ( since most colon cancers are mucinous ). In fact for most of Jo's treatments he was in the lead. That is till his including avastin in the chemo and I almost lost her. Than he wanted Jo to have HEPIC surgery. When we desided it was to radical, he dropped her as a patient. The other day ( New Years eve ) one of the nurses from the hospital called to check on Jo and remind her about this weeks doctors appointment. She also told Jo her marker numbers have tripled. Kind of put a Happy New Year in the dumps for Jo. So we are going in Monday to see the Ongologist and see where do we go from here. Thank you for your interest and support.

Hi MrCLINY,

I hope this message finds you & Jo well.  

I am new to this site but I can't help but read the similarities between Jo's & my wife's case. She's also mucinous ovca dx in 2013. At that time they thought it was borderline with unknown origin. A year before she had a hysterectomy for stage 0 cervical tumor. So we went for the 6 cycles of carbo/placitaxel & 25 sessions of radiation after which the ca19.9 started trending up. A laproscopic biopsy revealed some atypical cell changes around the abdomen.  So had 4 rounds of oxyliplatin/avastin with oral xeloda.  The markers actually dropped quite a lot, before going up again.  CA19.9 is currently around 280.

CT is now being scheduled & HIPEC is being suggested now...

Apart from some numbness in the fingers, fatigue & more frequent urination, she is generally very well & still works full time.

Please let me know how you both are getting on....I hope we can find a way to beat this.

God bless

Huppy

May be helpful re new treatment approaches.

http://csn.cancer.org/node/290205

abrub said:

Alternative to HIPEC

At Memorial Sloan Kettering, in NYC, they do a different Intraperitoneal chemo for the mucinous tumors - I had it for my appendix cancer (which was found on my ovary, and is commonly misdiagnosed as ovarian cancer.)  At 7+ years out from a Stage 4 dx, I am doing great.

I don't know where you are, if MSK is an option, but that might be worth considering.  PM me if you have questions - I don't follow these boards as much any more (but do get notified if there is a Private Message.)

Alice

Hello Alice,

will you please give me more info about the HIPEC alternative? My email is marinagorevski@gmail.com

thank you

marina