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UPSC recurrence notes - You are doing so well ..."

MaryAnnOnTheBay's picture
MaryAnnOnTheBay
Posts: 20
Joined: May 2009

The doctor said, “You are doing so well, I think we'll give you another three chemos.”
“Gee, thanks, doc.” said I, Mary Ann.
Context: I am 73 years old. I have had a recurrence of UPSC after two years. I had another series of taxol and carboplatin, 6 infusions, three weeks apart. CT scans before the first and after the third and sixth. The nodules are on the base of my lungs and a little in the omentum. Nodules shrunk after the first three chemos and did not grow any more after the second three chemos. This doctor, who I see infrequently, about every 6 months, is a oncologist gyn/surgeon with a special interest in UPSC. He has written a number of papers on it. He did my hysterectomy but insurance wouldn't work out for him to do my chemo. So I have another oncologist, who just does chemo, who I really like. He is the one who was at my hospital bed an hour after my recurrence was diagnosed, and who makes me feel like I can live with this thing. Anyway, chemo doctor wanted to give me Topotecan once a week. Looking it up, it appears to me that this is something given to recurrence patients. (Chemo doctor said it wouldn't take out hair, but website and gyn doctor said it would.) Gyn doctor suggested the three more taxol-carboplatin infusions, got on the phone with chemo doctor who agreed. The theory is that they give the most potent drugs as long as they work. If they stop working, and they will, then they go to the next level of potentcy. Thus one can continue many years if lucky. So I'll probably get the Topotecan later on. I may have gotten a lesser dose of taxol/carboplatin in 2008-2009 than I did in 2006 because of my kidney problems. In any event, it was much easier, perhaps because I am retired now and could laze around on my bad days and read murder mysteries.
I like having two oncologists who previously didn't know each other, both having come to town recently. It's like having a constant second opinion, since there is a nagging, untrusting part of me.
Emotions: I'm bummed out about the hair. My peach fuzz has been so nice this week. First chemo, in 2006, my friend electrically clipped my hair to ¼ inch. I felt good, like I was going into a righteous war. Second chemo 2008, I decided to let it come out naturally, it was fun to pull out hand fulls. One woman in my chemo room told of freaking out her friends with this, “Want to see what I can do?”
My neighbor had just put her long, thick auburn hair into a French braid. Teasingly I asked if she could give me some hair. Several hours later she came to me, very seriously, and offered to cut off the hair and give it to me, how should she do it, in a braid or not. She said she could quickly grow some more. I said no, I do have a wig and I wouldn't know how to handle loose hair, but I was very touched that she would offer this. It had taken several years for it to grow.
I went to California Pacific Medical Center's women's health center. Picked out two new hats, the free hand knit ones from Knitters By The Bay, one fuzzy purple, the other patterned teal. Also paid for one soft cotton purple from “Hats with Heart.” I guess getting a new hat is still an excellent form of retail therapy.
May all you NEDs (no evidence of disease) find my information totally useless, now and forever.
Mary Ann on San Francisco Bay

Ro10's picture
Ro10
Posts: 1482
Joined: Jan 2009

Sorry to hear you have to have 3 more rounds of Taxol/Carbo. But at least you know how you will react to the treatments. I hope and pray that the chemo will shrink your tumors. At least the Taxol/Carbo are proven to work for so many. May you be able to join all the NEDs after your next three chemo treatments. You remain in my prayers. It is nice you get a second opinion so easily.

barb55's picture
barb55
Posts: 91
Joined: Jan 2009

I just want to thank you for sharing- you covered so much of what this cancer is all about. Our fears, our anger, our humor that gets us through, - throwing away vanity for awhile (or not) and figuring out who we really are sweet peach fuzz and funny looking scars (mine hooks around the bellybutton like a big question mark) -and experiencing the wonder of how friends can perform amazing feats of kindness. This is an amazing group of women on this blog - all pulling for one another. I always thought I'd be the first to report a recurrence (I may be wrong, but I'm not sure who else has at stage 3C- I'm just over a year now NED) - and I wondered how I would handle it- honestly, we all think about it, but after reading your words, I'm thinking I'd handle it the way I handled the original diagnosis- the best I could, with a little more knowledge and like you with all the strong feelings that goes along with this and then we get through it. Welcome, Stay in touch, be lucky- that's an order and thank you again for sharing, Barb

Fran60's picture
Fran60
Posts: 24
Joined: May 2009

Well my experience is similar to yours. I was diagnosed in June of 06 with UPSC. Stage 1a, surgery, chemo and radiation. I have now had a reoccurence and just had my first chemo on May 29th. Same formula as yours. I just wonder how much chemo a body can take though. I want to fight this so bad as I have a new grandaughter on the way and 2 wonderful little grand sons. Sounds like you are holding up pretty well. I like your optimistic attitude and I am trying hard to have the same. I will get a scan after my next chemo to see how well it is working. It was good reading your story and hang in there and God bless you.

MaryAnnOnTheBay's picture
MaryAnnOnTheBay
Posts: 20
Joined: May 2009

On recurrence. I just replied to you on another thread. Doctor said they will give me as much of the taxol and carboplatin as I can stand, they they will switch to another, perhaps less toxic chemical if needed. I had a ct scan after my third chemo which showed shrinking of the tumors. I have them on the base of my lungs and a little in the omentum (abdominal fat layer). I had another ct scan after the 6th chemo, which showed no further shrinking but no growth. I think I get another CT after the last of this series. My initial diagnosis was in February 2006. I wish you strength and good luck in your treatment. Mary Ann on San Francisco Bay

Fran60's picture
Fran60
Posts: 24
Joined: May 2009

I think that is how you spell it. The chemo is causing more neurophy in my feet especially the right, so far it is like a tingling or asleep feeling, but not sure how much I want of this either. I envision not being able to walk or something, but maybe it won't get that bad. I hope you can continue to keep your cancer in check and not growing. It is such a scarry thing. I am in the Sacramento area not to far from you. Take care of yourself and enjoy each day that you can.

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

After I got to my 4th chemo round, the neuropathy I felt in my toes and the bone pain I got every round around the 4th day after chemo, both disappeared. Perhaps it was because I had to wait 4 weeks to get each of my last 3 chemo rounds because my hemoglobin and platelets got so low, and that extra time was good fo me. I had my last (6th) chemo round March 26th and have no neuropathy at all now. So maybe yours will also be a temporary thing.

((((((EXTRA BIG Huge hugs to all dealing with recurrance!))))))

MaryAnnOnTheBay's picture
MaryAnnOnTheBay
Posts: 20
Joined: May 2009

I'vre had 14 chemos total, one more to go. The neuropathy seems to fade somewhat when the chemo stops. They are giving me antidepressants in low doses for the neuropathy. Apparently this is effective for neuropathy in diabetes patients and my primary care doctor suggested it for this. I figure a little antidepressant can't hurt me. In fact I felt really extraordinarily upbeat just before this last series of 3 chemos started. The sun was shining and life was good sort of feeling. I've had both an older cheap antidepressent whose name I can't remember and now Cymbalta. I may ask to go back on the old one as the Cymbalta co-pay is pretty steep. Also my chemo oncologist recommended L-Glutamine which you get in a health food store. Nasty grit. I don't think there is any hard scientific evidence for effectiveness of either of these, but you could ask your doctor about them. Right now it feels like my socks are wrinkley, when they are not, and there is sort of a pins and needles feeling on my feet at times. And my fingertips feel tingly as I type, as if I cut my nails too short. Mary Ann on San Francisco Bay

deanna14
Posts: 738
Joined: Oct 2008

My doctor recommended taking B6 daily and I think that it helps with the neuropathy symptoms.

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

I have neuropathy in my feet. I know exactly what you mean about your socks feeling wrinkly! I frequently take off my shoes as I think my socks need to be smoothed out...and they already are! I find that if I stand on a tile floor without socks my toes hurt and feel soooo cold. Dr. had me taking B6 50 mg. three times/day when I first started having symptoms. My finger tips are MUCH better, but my feet still are problematic. I take Neurontin three times/day. Dr. said they may get better...and maybe not! Oh well, if it isn't any worse than this I can stand it!
Karen

Reddie's picture
Reddie
Posts: 72
Joined: May 2009

I'm not sure if I have neuropathy. I often feel itchy and nerve pain on my arm and feet especially when I wear socks. I haven't started treatment until two weeks from now. I feel better when I walk around or go to sleep. My parents told me to put a bar of soap (dial) under the bed sheets which will help to ease the nerves. Try carry dial soap in your purse in case you feel tingling so have your hands to rub on it. I find it very interesting!

shortmarge
Posts: 296
Joined: Nov 2008

I had it in my feet, mouth, tongue and face. The B vitamins are very important. I would also recommend that after you are through with treatment to get deep tissue massage treatments. After my first one the neuropathy was almost gone; after the second treatment it is gone completely. My oncologist can't believe that it is gone so soon. She did mentioned during treatment that it could take a year for it to go away.

Take your multivitamins they do help!

MIND, BODY AND SOUL!!!

Hugs.

Ro10's picture
Ro10
Posts: 1482
Joined: Jan 2009

That is great news, and has to be encouraging for those who are suffering from it. The massage treatments sound wonderful. I look forward to doing that after my treatment is completed. You look so great.

Reddie's picture
Reddie
Posts: 72
Joined: May 2009

I realized it's not dial... it's ivory soap... correction from my previous post.
hugs, Reddie

deanna14
Posts: 738
Joined: Oct 2008

My mom sleeps with a bar of soap under her sheets for leg cramps. She is convinced that it works. If it takes the cramps away, then it really doesn't make any difference if it is mind over matter or something scientific.

shortmarge
Posts: 296
Joined: Nov 2008

Funny Deanna, so does my mother!

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I am learning there are different types of neuropathy. I had chemo for breast cancer and it is cumulative so I have the painful type. No numbness or tingling. I have found lyrica to be a life saver. I am doing light yoga. Sleeping well now. If nothing else works give it a try!

Diane

california_artist's picture
california_artist
Posts: 860
Joined: Jan 2009
positivenergy
Posts: 6
Joined: Oct 2009

I have been reading all your notes for some time now and my heart is with all of you. I finally decided to post here, hoping to find some advise.

My mother, who is now 65, very healthy (never had any issues in the past except that her doctor gave her HRT Hormone Raplacement Therapy for 5 years during menopause from 1997-2002, which is a known cause of Endmetrial Cancer). A year ago, in May 2008, she had abnormal bleeding and after PT Scan was diagnosed with UPSC, Stage 1C. She immediately had a total Hysterectomy by lyposcopic surgery and began chemotherapy from late June 2008-October 2008 Carboplatin 1hr, Paclitaxel 3 hrs, every 3 weeks for 6 treatments. In Nov 2008, her PT scan looked clean, the cancer had never broken the line of the uterus. The doctor told us there was a 5% chance the cancer would come back since she had completed chemo.

Six months later in early June 2009, she started to have pain and on June 24, 2009 her PT Scan confirmed multiple hypermetabolic lesions throughout the liver, increased activity within the left iliac bone, suspicious for bone metastic lesion. She immediately began a second round of chemo from June 30-Oct 2009, Carboplatin 50mg & Doxorubicin 10mg. In early October 2009, just before her 4th treatment, her blood level, which had steadily been falling, shot up from 800 to 2000. She began to also have pains on the side but her doctor still gave her the 5th treatment. Just before her 6th treatment, on October 20, 2009, her blood level was now 3000, so her doctor did an MRI which showed the cancer was growing again and had become immune to the chemo. He postponed her 6th treatment that was scheduled for October 23, 2009 and sent her to a liver specialist, who did not see surgery as an option but suggested RadioEmbolization Sir Spheres (Selected Internal Radiation) with Nuclear Medicine.

The insurance just approved the RadioEmbolization and she will have the mock procedure done on Tuesday, November 17, 2009. If it is a sucess, she will have the procedure done just after thanksgiving.

Her oncologist is also trying to get approval for Avistan but may start giving her weekly Tobotokan. IS there anyone here who has UPSC that spread to the Liver? Has anyone had success with Radioembolization? Tobotikan? Avistan?

I was also recommended to try Molecular Diagnosis Target Now at www.Carisdx.com, sending tissue under cat scan of the new cancer growing for test results based on genetic make-up to give list of drugs that might be affective. However, when we discussed with her oncologist they were not quick to agree to caris, they had doubts about ligitamacy and brushed off as a waste of time. They said if we wanted it done, they could do it but we would need to arrange the shipment of the cancer tissue to be tested because they do not handle that. Has anyone sent tissue to caris or another center for molecular diagnosis? received positive information? suggestions on how to arrange shipment?

Thank you in advance for any advise and my heart and prayers and hope is with all of you here on this site.

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