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Dealing with stage 4b Serous Uterine Cancer

BarbershopBari
Posts: 2
Joined: Aug 2017

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

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1504
Joined: Jun 2015

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's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

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
Posts: 9
Joined: Sep 2017

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's picture
rdifatta
Posts: 15
Joined: May 2017

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
Posts: 829
Joined: Jun 2016

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's picture
NoTimeForCancer
Posts: 2544
Joined: Mar 2013

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's picture
SandyD
Posts: 130
Joined: Oct 2015

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's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

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's picture
rdifatta
Posts: 15
Joined: May 2017

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's picture
EZLiving66
Posts: 1319
Joined: Oct 2015

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's picture
rdifatta
Posts: 15
Joined: May 2017

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's picture
TeddyandBears_Mom
Posts: 1504
Joined: Jun 2015

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
Posts: 1
Joined: Nov 2017

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's picture
rdifatta
Posts: 15
Joined: May 2017

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

derMaus's picture
derMaus
Posts: 552
Joined: Nov 2016

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

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1504
Joined: Jun 2015

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

rdifatta's picture
rdifatta
Posts: 15
Joined: May 2017

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

pinky104
Posts: 574
Joined: Feb 2013

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
Posts: 252
Joined: Oct 2017

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!

derMaus's picture
derMaus
Posts: 552
Joined: Nov 2016

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?

rdifatta's picture
rdifatta
Posts: 15
Joined: May 2017

Hello All,  I'll be returning to treatment beginning June 5th with a regimen of Taxol/Avastin.  I have looked into some of the issues mentioned in this blog.  BTW I don't have any "mesh"

inside of me causing pain.  Curiously, in the past week most of my abdominal pain has gone away.  Since the return of my cancer, it seems that the discomfort will move to different location,

sometimes painful, sometimes not so much.  Seems strange, doesn't it?  I see how desperate and "down" my last post was.  I was so uncomfortable.  With regards to immunotherapy-

I found this passage on my original pathology report from 5/17 Hysterectomy:  Mismatch Repair Testing by Immunohistochemistry- MLH1 Result: Intact nuclear expression; PMS2 Result:  Intact nuclear expression; MSH2 result:  Intact nuclear expression;  MSH6 result:  Intact nuclear expression.  * No loss of nuclear expression of MMR proteins; Low probability of Lynch Syndrome; Further testing not indicated.  

I have consultation appointment with Doctor at Johns Hopkins soon.  I would like to have all of this explained to me so that I might know if I am a candidate for immunotherapy.  In the meantime, does anyone have experience or know about efficacy of Avastin in combination with Taxol used to fight USC?  I hardly know what to expect from this next treatment.  Thanks to all for your responses.

Rose

SF73
Posts: 252
Joined: Oct 2017

I don't have an answer about the efficacy of Avastin together with Taxol for USC. But wanted to wish you good luck for the treatment you will start getting tomorrow! 

alisong's picture
alisong
Posts: 1
Joined: Jun 2018

I have just been diagnosed with 4B uterine serous , had a radical hysterectomy, and just started the first round of chemo. Thankyou for sharing. It makes me feel I am not completely alone. I have felt very isolated and depressed as i adjust to my new reality of a short life expectancy.

 

Alison

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2544
Joined: Mar 2013

Alison, you are not alone.  Please ask any questions or vent anytime.  The wonderful women are here for you.

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

I'm Stage IVB too, just finished second round of chemo. My type is endometrioid adenocarcinoma. So sorry you had to find us, but it's a good and supportive group to find.

evolo58
Posts: 293
Joined: Dec 2017

There are many stories about those diagnosed with UPSC who have lived far longer than doctors originally predicted. I've met quite a few of them here and on another board. 

Life expectancy? The fact is, we don't know. The doctors don't. No one does. Well, maybe if you believe in a Higher Power, THAT power may know (and I do believe), but no one on this planet does. We can look at statistics, but those statistics do not tell the entire story. They include women who refuse treatment, much-older women (this is a cancer that usually affects women 75 and older), race (unfortunately, it affects some ethnic backgrounds worse than others, and I've read conflicting reports whether that is due to socio-economic or genetic factors), those with serious co-morbidities, etc. etc. They often include data from cases more than five years old (the data on this site does). Treatments have changed since then ... quite dramatically if you use ten years as a marker!

UPSC throws an obstacle, to be sure, but there are those who overcame that obstacle. And unlike those with lower stages, we will ALWAYS have to keep an eye on it, even after we pass the magical five-year mark. That is, unfortuantely, the curse of advanced-stage in general and UPSC in particular. We can't pass up or excessively delay post-surgery check-ups, procedures such as colonoscopies, etc. If we feel something is off, we need to report it to the care team ASAP.

But difficult is NOT impossible. 

SF73
Posts: 252
Joined: Oct 2017

Wishing you all the best in your journey, Alison. So many brave women before us have been cured or manage to live with cancer and it is completely possible for us to be joining their ranks. 

Jacjac2's picture
Jacjac2
Posts: 44
Joined: Feb 2016

I have carbo/taxol, 35 days of radiation (twice a day), oral Letrozole (stopped working), tried Doxil ( severely burned my body-huge blisters), and now on Avastin every 3 weeks.  He hopes it will work for a few more months but does tell me it will stop working.  I am quickly learning that this is the place to vent, to share, to cry, to shout, scream.....for only these ladies understand.  The reality after all of this has not set in for me, I guess I just live each day.  I recently lost a fellow teacher who had ovarian, she was my local support.  It scares me because she was always upbeat and I too didnt thinks much of her illness, but it took a quick turn for the worse.  Heaven gained a true angel.  Sorry for the downer....you are not alone.

melias53
Posts: 3
Joined: Jun 2018

Hello, my mom was recently diagnosed with UPSC. She had a total hysterectomy and a bilateral salpingo-oophorectomy with lymph node dissection as well as omentum removed. She is 74 years old and is recovering well from surgery. We haven't gotten the pathology results post surgery yet but her surgeon did tell us that she should start chemo as soon as she recovers from surgery due to the unpredictability of this kind of cancer. The treatment plan is 6 doses of carboplatin/taxol every 3 weeks. I have read up on all the horrible side effects of these chemo drugs and I don't know if she will be able to tolerate them. I am wondering if it will be worth it to put her through all that just to have a recurrence down the road, would she be better off just living the rest of her life as best she can? She is in no pain right now and feels well, she has a good appetite and takes walks everyday. I have also read numerous stories of people healing their cancers naturally either themselves or at mexican clinics, anyone know of someone who has done this? I am so scared and so confused about how to help her make the best decision for her, I would greatly appreciate any advice. Thank you!

evolo58
Posts: 293
Joined: Dec 2017

About only relying on DIY cures outside of a medical setting. Yes, many work. I would not deny that. But way too many give women false hope. The best approach I've seen is an integrative approach, working with your cancer care team. 

I am VERY impressed that your surgeon used the term "unpredictable" and NOT aggressive. Yes, this can be an aggressive cancer. But reading so, so mamy stories, it seems far more capricious. You can have three Type IVB's with similar pathologies at surgery. One can be NED for a decade (and yes, I read of a few in that situation). Another can have some problems, but they're manageable, and the person hits that 10-year mark, though not without much difficulty. The other can have very, very concerning serious problems that threaten reaching that mark. I think that's a characteristic of cancer in general, but it REALLY sticks out with Type IIs such as UPSC; as in, like a sore thumb.

Of the patients I see in my infusion unit, I would estimate that at least half are over 70. I would hope I'm not indelicate enough to enquire about their age :). I'm on the three-week Carbo-Taxol schedule, and for me, this is how it breaks down:

Day 1: Whee! Those steroids work!
Days 2 through 6: I feel like pure ick. Don't bother me.
Days 7 through 14: I'm more in the land of the living, but there are times I still feel bad. I have spells when I feel fine, and spells when I crash. I work around those.
Days 14 through 20: I'm almost there, barring chemo side effects! But Day 21 lurks around the corner ...

This, however, will change for every person on chemo. Some feel much worse than others. 

I am not a doctor or nurse, though.

melias53
Posts: 3
Joined: Jun 2018

Thank you evolo58 for all the good info especially the breakdown of the chemo effects and what to expect. Her cancer care team said that they're going for a cure with this treatment plan but I have never heard of anyone being cured of cancer, have you? Out of curiosity, did it ever cross your mind not to do the chemo?

MAbound
Posts: 829
Joined: Jun 2016

Getting and dealing with a cancer diagnosis is always a shock to everyone, but the advice you'll see repeatedly here is to keep in mind that this is going to be a marathon and not a sprint to get through. Focus on one thing at a time. Your mom has had the diagnosis and surgery part of the journey. Next she needs the pathology report to know where she stands and what the treatment options are. It sounds like from the preliminary reports they get in the OR that chemo, at least, is a certainty. A scary option in most people's minds, but it's doable, especially with all the options that are out there now for coping with the side effects. Each of us are individuals that bring different strengths and weaknesses with us to the table, so our experiences with chemo are not always the same but let me re-emphasize that it is doable.

There's also a big learning curve because there are so many variables and options involved. There is time for all of this, so don't think that you need to learn it all or make all of these major decisions quickly. The thing is, though, both you and your mother should not be passive while going through this. You'll find that doctors don't always agree with each other or know everything about everything, so you need to spend time learning what you can (reading the threads on this forum are a great place to start) so that you can know what questions to ask and understand the answers you are given and make informed decisions. If you're having trouble finding what you need, just ask and someone can usually help out.

Many of us are big fans of complementary medicine that uses both conventional treatments such chemo and radiation along with alternative treatments to both support our bodies and fight the cancer and to help us recover from it all. It needs to be done under medical guidance, though. Sometimes the treatments of one discipline can interfere with the effectiveness of the other and then there's no point in doing either. If you go this route, be sure you find a naturopath that is certified and specializes in oncology and keep the gyn-oncologist informed of everything that is going on or being taken outside of his/her perview. Do not go to just any naturopath.

Thirdly, while your mom has an aggressive form of this cancer, at 74, she's too young to be written off and sent straight into palliative or experimental care. The science for treating our cancer has changed a lot in the last 5 years or so, so there is plenty of reason to not panic at the outset. Even if it turns out that your mom has an advanced stage disease, it can sometimes be managed as a chronic disease like diabetes and she can still live her life.

Finally, a blessing on you for being there for you mother. Chemo is nothing if not exhausing, so your being there for her through it will make a huge difference on how she gets through it. Hang in there and remember that we are here for you whenever you need us.

 

 

melias53
Posts: 3
Joined: Jun 2018

Thank you so much MAbound for the kind and encouraging words. It is comforting to know that women who have been through this are so willing to help others too. I will look into finding a naturopath that specializes in oncology, I just hope that my mother can tolerate the side effects of the chemo at her age. She has been my rock for 53 years and now it's my turn to be her rock. 

Austindaughter
Posts: 1
Joined: Jun 2018

My mom was diagnosed a month ago with stage 4b uterine serous cancer. The tumor is 8cm in the uterus. Metasticized to omentum but not ovaries. Gyno oncologist recommended total hysterectomy up down abdominal incision. My mom is 71 so we consented. When she was cut open, DR wanted a radical surgery and take rectum also. My mom wanted quality of life so we chose not to take out anything and she was sewn back up. DR advised 3 rounds of carplatin/taxol right away, then have 2nd surgery. My mom is sick of being poked and prodded and she wants quality of life. She made a lifestyle change and is juicing and vegan with mushroom and many other supplements. She’s walking everyday whereas before her knees were too swollen. Of the 4 prescriptions she was on for high blood pressure, cholesterol, glucose, she’s only taking the metformin for prediabetes. After the surgery, she handled pain and nausea with gum and cbd oil, instead of narcotics or Zofran. She walks over a mile a day and her blood pressure is nearly 120/80 without any medication. I don’t know if what we decided is right, but she’s so much happier and active. Her skin has never looked better. Since we refused chemo, oncologist referred us to palliative hospice care. We‘ve also asked for immunotherapy and clinical trials but was told it was only for those on chemo or recurrence. Does anyone know of a happy medium where my mom can continue her natural treatment and see an open minded oncologist?

rdifatta's picture
rdifatta
Posts: 15
Joined: May 2017

Reading through the posts this morning; so many lives affected, so many unanswered questions.  The support given here is totally heroic.  Bless you all.  I am personally in a low point

with Stage IV UPSC.  As I have begun new regimen of taxol/avastin chemo weekly I find myself sinking very low.  I am generally a social being but find I have nothing to share with friends.

I have wonderful friends and family and am blessed with a loving and supportive partner.  I have been so blessed, but feel that I must make peace with my new reality.  Second treatment is Tuesday with second opinion appt at John's Hokpins on Friday.  Just feel so discouraged right now.  I need my energy to return.  

Thank you all everything.  Rose

MAbound
Posts: 829
Joined: Jun 2016

Dear Rose,

it's really understandable that your feeling down at this point of your journey after suffering the disappointment of such a short stretch NED after first round treatment, the pain recurrance has brought, and being at the beginning of a longer than normal stretch of more chemo. That's a long tunnel to be looking down and the light at the end is probably pretty hard to see right now.

Give yourself permission to indulge in feeling down when you need to. Give yourself permission to focus on yourself as you go through treatment and don't feel guilty about accepting help and understanding from those who care about you. Letting them do what they can for you is a kindness to them. Feeling like there is nothing you can do to help a friend or loved one is it's own kind of torture, so don't look at accepting it as some kind of failure. Most of us find it harder to be on the recieving end of helping, but if ever there was a time in our lives when we need it, this is it. There will be good days amoung the bad ones. It's why we call this journey a roller coaster because of all it's ups and downs with our emotions. Recognize those down days as just ones you need to regroup so you can continue on to reach the good days.

You have plenty to share with friends. Look at how you are sharing what you are going through with us. You never know how what you share here is going to help someone else, so keep doing it. I've been on this board for over two years now and have felt lifted many times by the generousity of others sharing what they are going through and the knowledge and wisdome they've acquired as a result. Your experiences are difficult right now, but never doubt that they have value to the person you are and will be when you reach the other side of the tunnel. 

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2544
Joined: Mar 2013

Oh Miss Rose, I am so sorry to hear you are not feeling your usual self.  What would make you happy?  Maybe you can do that?  A ride someplace?  An ice cream cone?  Start with something simple YOU would like.  Hugs dear one.  

ConnieSW's picture
ConnieSW
Posts: 1415
Joined: Jun 2012

I feel honored that you came here at such a hard time in your life to share yourself and your deepest feelings with us. Never forget how much we care. I'll be with you in sprit Friday at your appointment..

rdifatta's picture
rdifatta
Posts: 15
Joined: May 2017

To all of you, especially MAbound, NoTimeForCancer, and ConnieSW, your kind words go a long way to support and strengthen me.  My second opinion appt at Johns Hopkins went well.

I went with my sister, who ironically has recently been treated for Stage III Endometrioid Cancer, came with me.  I was notified of a possible clinical trial if the Taxol/Avastin regimen

does not improve my condition.  I've now had 3 weekly infusions and (knock on wood) I'm tolerating them well.  Hopkins doctor wants update after 2 cycles (months) so hopefully my numbers will turn around by then.  I'm hoping that's the case.  The thought of clinical trial frightens me.  Rose

cmb's picture
cmb
Posts: 341
Joined: Jan 2018

Rose,

I hope that the new chemo regimen will work for you and that you can continue to tolerate the treatments without too many side effects.

Hopefully you'll never need the option of a clinical trial in the future, but it's still conforting to know that this option may exist if needed.

Donswife48
Posts: 289
Joined: Nov 2015

My son was diagnosed with non hodgkins lymphoma when he was 15.  He went through surgery to remove a mass above his eye, then radiation on the spot.  In about a year, he was again diagnosed with recurrent cancer, this time in his leg.  That's when his wonderful young doctor said we're going clinical trial, with a concoction of chem drugs that he thought would benefit.  AND IT DID!  I was scared for Jeff, but he didn't want to pass up any opportunity to be cancer free.  AND HE IS!  He is now 48 years old and has not had any recurrance or new cancers.  I know clinical trials sound like something that people can try if they don't respond to traditional therapy, but if my UPSC returns, I will never hesitate to seek a clinical trial.  Hopeing you respond to your current therapy, and hoping you gain strenght.  Hugs Nancy

cmb's picture
cmb
Posts: 341
Joined: Jan 2018

Nancy,

Thank you for sharing such a wonderful story about your son's successful battle with cancer and the recovery that has lasted into mature adulthood. What a relief and good fortune for him and your entire family.

My mother also struggled with cancer (originally cervical) that spread and required more surgeries and different treatments over 7 years. In 1987, she was given a newly approved chemo drug that proved to be a great success, finally putting her into remission. She died in her mid-70s, several years after this last treatment from some of the side effects from her earlier treatments. But she was still cancer free at the time of her death.

So new drugs or new methods of treatment, either as part of a clinical trial or introduced as new treatment protocols, can have remarkable results.

SF73
Posts: 252
Joined: Oct 2017

What a wonderful story to share. Thanks, Nancy. Wishing you and your son many healthy years!

rdifatta's picture
rdifatta
Posts: 15
Joined: May 2017

After two cycles of Taxol/Avastin weekly (Avastin Bi/Weekly) a PET scan was done and, by gosh, it showed that the treatment was working!  Tumors have receded and the news generally good.

CA125 at time of recurrence was 340, but as of now has gone down to 11.5.  There are side effects, however.  I am having sinus inflammation and some diarrhea.  My oncologist is thinking

about going to monthly Avastin infusions at some point in the future.  I believe I read somewhere on this blog that Avastin will stop working over time.  Not sure about this, perhaps someone

out there is familiar with this.  For now I'm just busy keeping my energy up and getting rides from a lot of friends and helpers.  God Bless you all!  Rose

Jairoldi's picture
Jairoldi
Posts: 197
Joined: May 2017

Thanks for sharing your positive news. It's good to hear from you and that those tumors are receding along with your CA125 counts.

txtrisha55's picture
txtrisha55
Posts: 684
Joined: Apr 2011

Good News.  Congratulations that the PET scan shows it is shrinking.  Continued good thoughts and prayers for you. trish

MAbound
Posts: 829
Joined: Jun 2016

It's been a while, so it's good to hear from you and good to hear that your treatments are having some positive effect, at least on your CA-125 levels and scan results. The CA-125 is very encouraging, but I'm a bit surprised it's down in spite of the sinus inflammation because something like that can cause the levels to climb without it being due to the cancer.

Immodium helps with diarrhea if you haven't tried it yet and a bulking agent like Benefiber or Metamucil might help too. Such an annoying side effect, eh? Hopefully it will subside after a while.

I'll be praying that you'll keep having enough energy and emotional stamina to keep at this till you reach NED again. It sure looks like you are heading in that direction, so feel the positive energy and wishes we are sending your way! 

ConnieSW's picture
ConnieSW
Posts: 1415
Joined: Jun 2012

Delighted to learn things are moving in a much better direction. I know you were so discouraged the last time we heard from you. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2544
Joined: Mar 2013

Rose, so good to hear from you and better to hear how the treatments have worked.  Put this in the win column.  Hugs dear one.

cmb's picture
cmb
Posts: 341
Joined: Jan 2018

So glad to hear that things are looking up for you.

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