Dealing with stage 4b Serous Uterine Cancer

Options
BarbershopBari
BarbershopBari Member Posts: 2
edited August 2017 in Uterine/Endometrial Cancer #1

I am writing with hopes of gaining some ideas/help regarding my wife's serous uterine cancer, with which she was diagnosed in June, 2016 following a total hysterectomy.  As the cancer had metastisised to the omentum/peritoneum outside her uterous, it was immediately staged at level 4.  Her surgeon/oncologist/ob/gyn (same woman) at Riveerside Hospital in Cols. old us then that this is a very aggressive cancer with a rather poor prognosis.  No lymph node involvement, no prior pain or discomfort symptoms.  Spotting was the first sign of a problem and led to the hysterectomy.

Local treatment in Mansfield (OH) began immediately consisting of Carboplatin and Taxel every 3 weeks x 6.  Scans in November 2016 and March 2017 were "clear".  But in mid April, pain and pressure in her abdomen led to the discovery of extensive ascities (fluid) in her lower abdomen.  Catheter installed, Diane became dehydrated and very ill, ddn't think she would live.  Fluid stopped at 6 week point, and 2nd regimen of treatment began, cnsisting of 4 rounds of Doxil and Avastin.  Scan on 8-2-17 showed that cancer had advanced to upper region of her abdomen.  Had second opinions from Cleveland Clinic and James at OSU confirmed that chanes of traditional treatments not good, perhaps between 10-30%.  But agreement of using current treatment of Taxel EVERY WEEK for 3 weeks, one week off, 3 rounds of this plus Avastin every 4 weeks.  Next scan around mid Nov.

Now looking into coupling chemo with vitamin therapy or other alternative treatment.  Looking for any ideas/suggestions on how to best proceed to beat this crap!  Thank you.  Dave

«13

Comments

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    Options
    Dave,

    Dave,

    So sorry to hear about your wife. This is a crappy cancer. I don't have suggestions on alternatives but am wondering if immunotherapy was discussed as an alternative for her?  I hope others with more knowledge than I have will come along shortly and give you more input.

    Glad you found this board. You will find everyone here supportive and willing to share their experiences and knowledge.  Also, please take a look at one of our members profile - TakingControl58. She has documented her journey and was also stage 4 with some interesting therapy solutions.

    Please come back and let us know how your wife is doing and ask any questions.

    Love and Hugs,

    Cindi

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    Options
    Hi, Dave

    i don't know much about alternative treatment, but I do know a little bit about immunotherapy.  I am currently on the drug called Keytrud.  After six different chemo either stopped working, or caused major side effects. I asked if we could try Immunotherapy and he agreed to look into it.  I really don't know if I match all the things others talk about, but Merck Pharmaceutical agreed to let me try it under their Compassionate Use Program. I have been on it for over a year now,  at first I had a lot of shrinkag, then some progression that needed radiation and now my tumors are remaining stable.  It has given me a year I didn't think. Would have.  During one of the progression/radiation times we did discuss a trial called MATCH.  They take a biopsy and try to match it to 20 some oral chemo drugs.  If the Keytruda fails, I will look into that more seriously.  

    Hugs and prayers to you and your wife, Lou Ann

  • ebellini
    ebellini Member Posts: 9
    Options
    Lou Ann:  Glad to hear you

    Lou Ann:  Glad to hear you have had that year.   I am hoping to have two to see my daughter graduate from high school.  You have given me hope that I can maybe make it, even if it requires much treatment.  Thank you.

     

    Dave:  I feel for you.  My husband broke down for the first time on Friday with the last bad news.  He was upset with himself because he knows I hate weakness.  I hugged him and told him the truth, in this case it's okay.  It isn't really even weakness it is just a feeling.  Frankly, he has been so tough up to then that I wondered if he really cared, although he has been very supportive every step of the way.  I have my answer and just suggest you and your wife be open, honest and caring.  Nobody fighting this disease or supporting a spouse fighting it is weak.

  • rdifatta
    rdifatta Member Posts: 15
    Options
    To Radiate or Not

    I am also afflicted with UPSC.  I am heading into chemo#6 and have tolerated it reasonably well.  Last CT scan was clear.  I cannot celebrate because of things I read, knowing the high

    probability of recurrence and mortality.  Now I am dealing with confusion about treatment going forward.  My oncologist hedged about going forward with radiation because of differing

    opinions related to benefits/risks for Stage IV patients.  I really could use some clarity about treatment of this disease and my best chance of survival going forward.  Any help I can

    get from this site would be welcome.  Thank you, Rose

  • MAbound
    MAbound Member Posts: 1,168 Member
    edited September 2017 #6
    Options
    After Chemo

    Hi Rose, 

    I see that you haven't gotten a response to your post. I have endometrial adenocarcinoma instead of UPSC, but at a Stage 3a, grade three I am also at high risk for recurrence and understand your concern about what's next for you.

    In a bit after chemo, you'll probably have another CAT scan to see what the chemo has done for you. You may be NED, or they may find that there's an area that they can aim radiation at that would be effective. Remember, chemo is a systemic treatment, and radiation only treats what it's aimed at, so it's use can be nixed if there's cancer where they can't realistically aim. Most of us that get radiation get pelvic and vaginal because that's where recurrence is most like to happen and if yours is already beyond those areas that may be why your doctor is thinking your not a candidate for it.

    Because your oncologist is hedging about risk/benefits of radiation for stage IV, I think it might be in your best interest to seek some second and third opinions from other gyn or radiation oncologists about what to consider next. That's why keeping your all your records comes in handy.

    Metastatic cancer is not necessarily a death sentence; many of us see it as more like a chronic disease that you have to keep at to keep under control just like diabetes. There are other options out there besides radiation for continuing treatment that would be helpful to become aware of. It's a lot to slog through, but there are others on the board with stage IV that are living with it and you can find a lot of information about how they are doing that if you keep reading. Did you ever have any genetic or genomic testing? It might be a good place to start learning and questioning your doctor about.

    I'm sorry I don't have a definitive answer for you, but there are so many variables to this cancer that that's not really possible. The thing is, don't stop learning and asking questions and pushing your doctor(s). You really can't be passive about fighting this beast and have to be your own advocate. No one doctor knows it all, so you have to take some of the research and learning into your own hands.

    Congratulations on getting through chemo!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,382 Member
    Options
    MAbound, thanks for

    MAbound, thanks for responding to Rose.  For a lot of reasons I have not been able to keep up with the boards and appreciate someone is looking out for our newer members.  Rose, I think MAbound had some good thoughts.  Please let us know how you are doing and what treatment, if any, you move forward with.

  • SandyD
    SandyD Member Posts: 130
    Options
    Look into genomic profiling

    Dave, I recommend bringing up genomic profiling with her oncologist. Determining the particular gene mutations in one or more tumor samples can potentially help in determining if there are treatments including immunotherapy drugs and possibly clinical trials that could be helpful. There are multiple organizations that offer this. I went through Foundation One which you can google. Sometimes it may be necessary to press the issue a bit with doctors. Let us know how she's doing.

     

  • ckdgedmom
    ckdgedmom Member Posts: 166 Member
    Options
    For Rose

    Hi Rose

    I am Stage IVB UPSC and new to this board so I am just now seeing your question.

    After 6 rounds of Taxol/Carboplatin I was referred to a Radiology Oncologist who discovered 2 additional lymph glands that he feels strongly are cancerous.  They responded well to chemo so he directed external beam radiation to my pelvis (25 rounds) and then 3 brachytherapy treatments.  6 weeks after the end of radiotherapy my CT scan showed that the lymph glands he discovered the cancer in (they are in my neck next to my carotid artery) were starting to grow again so I am now undergoing 30 rounds of external beam radiation to my neck area and weekly doses of cisplatin.

    My doctor feels very positive about my chances of beating this...

    Seek out the best radiology oncologist in your area and discuss your case with him. I am blessed to have my amazing doctor---he's incredible and so is his staff. The man is literaly an angel...

    i hope this helps answer some of your concerns...

  • rdifatta
    rdifatta Member Posts: 15
    edited October 2017 #10
    Options
    To Radiate or Not

    Many thanks to MAbound, NTFC, and ckdgedmom for responding to my post.  Now that the 6 rounds of chemo are through (and I am starting to feel better), the plan ahead is to get

    CT scan, consult with radiologist, then consult with oncologist to determine the way forward.  Looks like MAbound is quite accurate about what was to be expected.  Can we say, then,

    that the path forward is uncertain, and requires vigilance, and an openness to treatment options?  The difficulty beyond the physical is the desire for clarity where there is none.

    It is so helpful to hear that there are people out there that understand and also live with this.  Thanks again for responding.  I will check in from time to time.  Rose

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    Options
    Hi Rose!  I also have UPSC

    Hi Rose!  I also have UPSC and only made it through three of six chemos but when I asked my doctor about radiation, he said no.  His PA explained he waits until something comes up before doing any radiation if he considers you NED after surgery and chemo (he considered me NED after surgery) but wanted chemo as a preventative.

    I think we all live with that feeling of waiting for the other shoe to drop.  I am astounded about the number of treatments out there for this disease.  I just think there has been so few studies regarding UPSC.  

    Good luck and let us know how things are progressing.

    Love,

    Eldri

  • rdifatta
    rdifatta Member Posts: 15
    Options
    No Radiation!

    I finished my sixth chemo on 10/10/17, and have had consults with Radiologist and Oncologist. Also, my CT scan came up clean.  It was decided that radiation would not benefit

    my condition in any significant way, so it was nixed.  I am (for now) out of treatment.  I will be monitored every three months and examined by oncologist.  Also, there will be the

    monthly visits to flush the port.  So here I am - NED.  Not spiking the ball here; I worry about recurrence and what the signs might be.  I feel so fortunate to have gotten through

    the chemo reasonably well.  In the near future I will be seeing a geneologist and looking into genomic profiling.  Thank you all for being here to listen and guide Wink

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    Options
    Congrats RD on finishing

    Congrats RD on finishing treatment! What a major milestone. May you dance with NED forever....

    Now, give your body time to heal. Be patient, it takes quite a while to get back to close to normal.

    Keep in touch.

    Love and Hugs,

    Cindi

  • Pam121306
    Pam121306 Member Posts: 1
    Options
    Dave, 

    Dave, 

    I am also going through this. Diagnosed adenocarcinoma tumor in uterus in may 17, radical hysterectomy June 9. Bladder was injured which led to a whole different issue that I won't go into but it postponed my start date of treatments which finally began Aug 14, 2017. Did 6 cisplatin infusions along with 35 radiation treatments. Finished both Sept 20.  Now, going back to right around the time I started treatment,  I had a knot under far right incision on my abdomen that I brought up several times but Dr kept saying it was scar tissue and for me not to worry because my margins & lymph nodes were clear.. Well, it continued to bother be and each time I spoke with my Dr(we texted often because of so many other bladder issues) he would dismiss it. Finally on Oct 26 I had surgery to go in and remove so called scar tissue,  expecting to wake up with 2 tiny incisions over the exact spot from original surgery, and expecting to go home the same day and return to work shortly thereafter since I had just gone back to work. But instead when I was on the table, he clipped tissue and sent to pathology who the confirmed that it was cancer and not scar tissue so Dr connects the dots and I have a 7 inch incision and the cancer was under both scars and had wrapped around my muscle. Next step, he sends me for PET scan and low and behold there was cancer under the remaining two incisions from original surgery. So basically the cancer attached itself to all 4 incisions from the original surgery and I had 3 surgeries to remove from abdominal wall. Dr stumped. Says it's so rare. So now I start chemo again in 2 weeks (last surgery was one week ago today) but this time the regimen will be cisplatin, taxol, and Avastin once every 3 weeks for 6 months. I am so stumped and scared and I honestly think that it's a guessing game with the beast we're dealing with. I am a single mom and self employed and the Lord has provided and I trust Him. However, it's hard not knowing what comes next. Please update on your wife and new info you find.

    Blessings to you,

    Pam

  • rdifatta
    rdifatta Member Posts: 15
    Options
    It's Baaaack!

    I met with Oncologist yesterday and she confirmed what I guess I already knew- I am having a recurrence.  I have been in discomfort since the start of the year.  Pain in my abdomen has been constant.  Results of PET scan show scattered tumors present in the cavity of my abdoment.  They are small, and although they have metastisized, has not yet invaded any organs.  I guess that is the good news.  I was told that the next step is once-a-week chemo (taxol/avastin) for 6 months.  AAARRRR!!!  I surely did not get much NED time since last treatment was October 2017.

    Does anyone have words of wisdom?  I am demoralized, but trying to push forward and keep faith.

    Rose

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    Options
    OH Rose, so sorry to hear

    OH Rose, so sorry to hear this! But, I'm glad they caught it early. I hope you are able to tolerate the weekly chemo and find yourself dancing with NED on the other side. 

    Please come back often and let us know how you are doing.

    Love and Hugs,

    Cindi

  • derMaus
    derMaus Member Posts: 558 Member
    Options
    rdifatta said:

    It's Baaaack!

    I met with Oncologist yesterday and she confirmed what I guess I already knew- I am having a recurrence.  I have been in discomfort since the start of the year.  Pain in my abdomen has been constant.  Results of PET scan show scattered tumors present in the cavity of my abdoment.  They are small, and although they have metastisized, has not yet invaded any organs.  I guess that is the good news.  I was told that the next step is once-a-week chemo (taxol/avastin) for 6 months.  AAARRRR!!!  I surely did not get much NED time since last treatment was October 2017.

    Does anyone have words of wisdom?  I am demoralized, but trying to push forward and keep faith.

    Rose

    Words, not necessarily wise

    I have words, don't know about the wisdom: First, you have a local/regional recurrence, not a distant one, which puts you in a much better position for containment. Second, have you had geonomic tumor testing done? Or, does your original surgical path report give any indication of your microsatellite status, i.e. a notation like "MSI-H" ? Having that marker would qualify you for immunotherapy, which may be a better option at this point. Third, is the recommended chemo the same kind as you had before? You're correct that 6 months isn't much down time, and I'd strongly question having the same kind again so soon. Fourth, could the tumors be treated with stereotactic radiation, e.g. CyberKnife? I had it and it works well with virtually no side effects. Last, but not least, I'd strongly suggest getting a second opinion ASAP. There are many variables to treatment and you want to examine all your options. Best wishes, you'll be in my prayers. B

  • rdifatta
    rdifatta Member Posts: 15
    Options
    What about Immunotherapy??

    I will be beginning treatment (taxol/avastin every week for three weeks, for six months) very shortly.  I am pretty much in constant discomfort.  My abdomen feels like muscles are being

    ripped whenever I sneeze or hiccup.  I can't help but think my days are numbered, but I have to give the chemo a chance to shrink the tumors.  Who knows, maybe it will be effective.

    My partner is suffering so; I hate to see it.  In my mind, I believe that immunotherapy is my only hope.  Seems like a tiny number of us can be helped by what is approved for treatment.

    How do I find out if I am one of the few who could benefit?  At the time of hysterectomy, pathological report states that I am negative for "Lynch Syndrome".  My oncologist believes this means

    that I am not eligible for immunotherapy.  I like my oncologist, but I just don't understand what all of this means.  As I am becoming more and more uncomfortable, I wonder if I will have the

    energy to keep running through this maze.  Rose

  • derMaus
    derMaus Member Posts: 558 Member
    Options
    Foundation One testing?

    That's strange: a pathology report doesn't test for Lynch syndrome; only genetic testing can do that. I guess they were inferring that you didn't have Lynch if your turmo was microsatellite stable? Have you had Foundation One testing?

  • pinky104
    pinky104 Member Posts: 574 Member
    edited May 2018 #20
    Options
    rdifatta said:

    What about Immunotherapy??

    I will be beginning treatment (taxol/avastin every week for three weeks, for six months) very shortly.  I am pretty much in constant discomfort.  My abdomen feels like muscles are being

    ripped whenever I sneeze or hiccup.  I can't help but think my days are numbered, but I have to give the chemo a chance to shrink the tumors.  Who knows, maybe it will be effective.

    My partner is suffering so; I hate to see it.  In my mind, I believe that immunotherapy is my only hope.  Seems like a tiny number of us can be helped by what is approved for treatment.

    How do I find out if I am one of the few who could benefit?  At the time of hysterectomy, pathological report states that I am negative for "Lynch Syndrome".  My oncologist believes this means

    that I am not eligible for immunotherapy.  I like my oncologist, but I just don't understand what all of this means.  As I am becoming more and more uncomfortable, I wonder if I will have the

    energy to keep running through this maze.  Rose

    rdifatta--muscle pain

    I had an incisional hernia caused by my surgery.  I have to wonder if you might have that, too, with the description of your pain with movements like coughing or sneezing.  My hernia started  when I was working out on my Pilates, but other things can also cause it, like lifting, for example.

    I saw a show on complications caused by mesh used for various procedures.  One woman said she was in constant pain and felt like she had sandpaper inside her rubbing her when she walked.  The mesh decomposes after a short time.  Do you have anything like that in you, maybe from a prior surgery?  Just a thought. 

  • SF73
    SF73 Member Posts: 317 Member
    Options
    rdifatta said:

    What about Immunotherapy??

    I will be beginning treatment (taxol/avastin every week for three weeks, for six months) very shortly.  I am pretty much in constant discomfort.  My abdomen feels like muscles are being

    ripped whenever I sneeze or hiccup.  I can't help but think my days are numbered, but I have to give the chemo a chance to shrink the tumors.  Who knows, maybe it will be effective.

    My partner is suffering so; I hate to see it.  In my mind, I believe that immunotherapy is my only hope.  Seems like a tiny number of us can be helped by what is approved for treatment.

    How do I find out if I am one of the few who could benefit?  At the time of hysterectomy, pathological report states that I am negative for "Lynch Syndrome".  My oncologist believes this means

    that I am not eligible for immunotherapy.  I like my oncologist, but I just don't understand what all of this means.  As I am becoming more and more uncomfortable, I wonder if I will have the

    energy to keep running through this maze.  Rose

    My understanding is Lynch

    My understanding is Lynch Test will indicate if there is a mutation in your germline, that is anything you have inherited from your parents. If you get a genomic testing of your tumor, in addition to germline mutations they can also check somatic mutations, which are mutations that are acquired in your lifetime (all kinds of reasons why genes mutate: environmental factors, hormonal imbalances, diet, exercise AND random stuff ) So I believe being tested negative for Lynch syndrome does not guarantee that there is no Microsatellite Instability (MSI) in your tumor. It could be an acquired mutation. I would highly recommend getting the genomic profiling of your tumor. As an alternative to MSI, if you have the POLE mutation you may also qualify for immunotherapy. BTW I dont think immunotherapy is your only hope. On the website inspire I read about women who had many recurrences that are treated with chemotherapy each time who eventually reached remission. Did you have Avastin before?

    Wishing you all the best. I like Pinky's hypothesis of the pain may be being caused by hernia. Please don't lose hope. We are all here for you. Hugs!