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NED!! after 4 rounds of Chemo (MMMT)

I believe
Posts: 38
Joined: Oct 2012

My mom was diagnosed with MMMT on September 2012. had hysterectomy and the results of biopsy was that the tumor is confined in the uterus 1/3 myometrial invasion (lymphnodes, etc...were clean). After having 4 round of carbo/Endoxan we received last week the results of the MRI and it was NED!!!. Our Dr Gyn/Onc informed us that since its MMMT he thinks she might still need to have radiation  but he will discuss the case with the Dr Hematology/Oncology and get back to us. After discussions they agreed that eventhough its MMMT no radiation is needed sicne it was only confined in the uterus.

wanted to share with you our experience and wish you all "NED" and good health for the rest of your life

 

ConnieSW's picture
ConnieSW
Posts: 623
Joined: Jun 2012

Give your mom a hug of congratulations from me.  Pat yourself on the back while you are at it.  I know your support was as invaluable to her as my daughter's was to me.

I believe
Posts: 38
Joined: Oct 2012

Thanks a lot Connie for your support...I am sure that your daughter's support was invaluable because she knows that nothing in this life replace the mother

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Wonderful news for your dear mom!!  I as well was diagnosd with MMMT, stage 3C, as found in 1 pelvic node.  Had chemo (carbo/taxol) and sandwiched between was 33 rounds of external radiation.  What stage is your mom?

Definitely agree this cancer is very aggressive, as to why we have to hit it hard, especially at the beginning.  

Enjoy dancing with NED and hope and pray for many more years in this club~

Jan

 

 

 

 

I believe
Posts: 38
Joined: Oct 2012

Thanks Jan...The doctor informed us that its early stages of MMMT (I or II) since it was confined in the uterus (1/3 wall invasion and lymphnodes were clean)

I read your story and its really encouraging to know about your 3.5 years journey and I wish you dance with NED all your life :)

I believe
Posts: 38
Joined: Oct 2012

Following the operation on Sept 2012 (MMMT stage I) and the NED on February 2012, my mom is feeling pain now for 4 days at the place of liver and she’s not able to sleep well. We went to the doctor and he asked for CT scan which will do it hopefully on Saturday. A lot of things questions going on mind at the moment (did the cancer spread to the liver?  Have we done the right treatment 4 rounds of Carbo/Endoxan? Should we have followed a stronger treatment Carbo/Taxol for six rounds + radiation? I am really feeling hollow although I don’t have the results of the CT scan yet and what’s killing me is that she was extremely happy that my wife is pregnant and the delivery date is next August….She told my sister that if the cancer spread to other organs she doesn’t want to have any treatment but I told her its not her choice and I want to fight till the end…she’ s the best thing I had in this life and I don’t want to lose her easily….

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

We all tend to jump to conclusions, especially once have heard the phrase YOU HAVE CANCER!!!  EVERY ache and pain brings back the original diagosis, so our minds go off.  Try to not get too far ahead of yourself as this might not be cancer....be hopeful if you can.

I've seen cases of people having same type cancer, stage, grade, and treatment protocols and one will find the cancer to return.  Remember all of our bodies are different and UNIQUE, as to why it's not the same outcome.  Once the CT results are back (generally take a day or so), this will give you the black and white results.  From there you can gather your thoughts and see what the doc suggests if cancer has returned, and if not, continue on my friend.

My oncologist told me whenever I have pain and it moves in different places, he's not worried.  But...if the pain continues in same location for approx 2 weeks, come see him as he'll do scans.  

How old is your mom?  Is her health, outside of cancer, pretty good?  When you say you mom doesn't want any treatments, but it's not HER CHOICE.....I think it is your mom's choice in the end....as it's her body.  What you can do is gently guide her, but elderly people tend to get tired and want to give up.  You can gather the facts and if treatment is suggested have the doctor go to bat for you.  At times patients listen to guidance from the medical profession vs. family members.  Might be helpful to you as well.  We always talk about my mother-in-law and how we can suggest this or that for her, but if the trash man tells her to do something, YEP SHE'S RIGHT ON WITH WHAT THE TRASHMEN WOULD SUGGEST AS WE AS FAMILY MEMBERS CARRY NO WEIGHT.   

Sending you positive vibes that this is nothing more then a scare and your mom will be just fine!!!

Hugs,

Jan

 

 

I believe
Posts: 38
Joined: Oct 2012

Jan - Thanks a lot for the great support. I feel much better....We will wait for the CT scan results, trust the Dr :) and plan the way forward.

My mom is 73 years old she's overweight,  has cholesterol, pressure, and diabetes but she is very active and always working at home..

I will keep you updated about the results.

Thanks

 

 

I believe
Posts: 38
Joined: Oct 2012

Jan - You were right I jumped into false conclusions :) Yesterday we received the CT scan results and it turned out that everything is normal...Its really a great feeling and I thank GOD for this...

keeping you in my prayers and wish you all a life full of NED

 

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

You know cancer is sneeky and we as cancer patients tend to think "it's back" with every ache and pain.  Part of the deal I'm sure!!  

Did doc say why the pains and sleepless nights?  Possibly due to her other health issues, but tend to go back to the cancer having recured.

Happy for you and your mom...keep the faith this soon shall pass

Hugs,

Jan

I believe
Posts: 38
Joined: Oct 2012

Hi Jan,

The Doc said that the results are very good and the pain could be a muscle strain especially that she's feeling much better now after 2 week. In the first 2 to 3 days she used to feel severe pain by only breathing and couldn't sleep well at night.

The next MRI is in July and I will keep you updated.

Thanks a lot for your great assistance

 

 

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Great to hear it's nothing really...probably just gettin' old, as that's the response my docs always tell me if NOT CANCER.

Hang in there,

Jan

  

I believe
Posts: 38
Joined: Oct 2012

Today, I recieved my mother's MRI report and the result is a lesion of 4,5 cm on the liver...Tommorow we have an appointment to show the report to the doctor..It seems the beast is back again and the pain she felt in the liver back in April is because of the lesion although the CT scan results were clean back then.

It's a huge cross to handle and don't have the energy to continue living with this fear and  thinking that my will mom will have to suffer more and more

 

ConnieSW's picture
ConnieSW
Posts: 623
Joined: Jun 2012

Don't give up yet.  You need to get the whole picture.  There is much to take pleasure in.  Your baby is due very soon?  New life brings such joy.

 

Does your mom come to this site?  Maybe reading our stories of the continuing fight to beat Chester, as one of our beloved members called her cancer,will help bolster her courage.

I believe
Posts: 38
Joined: Oct 2012

Thank you Connie, My wife started the 9th month a week ago so the baby is due anytime now

My mom doesnt use the computer but I will make sure to tell her about encouraging stories here.

Pray for us.

Thank you

 

RoseyR
Posts: 464
Joined: Feb 2011

 

Like Jan, I too was diagnosed with MMMT uterine cancer three years ago (stage IB, 60 percent invasion of uterine lining but clean lymph nodes), yet I was prescribed six rounds of carboplatin with taxol and 25 pelvic radiation treatments which is pretty standard for MMMT uterine cancer; in fact, many women have additional treatment (vaginal radiation, called "brachytherapy").

Because I saw in "integrative doctor" during treatment (an M.D. who prescribes supplements to protect the body and immune system during treatment), I suffered not a day from treatment beyond my lost hair; I never lost appetite or developed neuropathy.  However, my hemoglobin did of course fall low enough toward the end of treatment to warrant a transfusion (not unusual), since which time I have felt increasingly well.

Because, however, uterine carcinosarcoma is an aggressive tumor, I did all the research I could on the disease and became friends iwth a few women on this web site, some of whom consulted naturopaths after finishing conventional cancer treatment.  One is doing so well four years after a diagnosis of stage 3C ovarian serous cancer (very aggressive) that I asked who her naturopath was and became increasingly impressed with the treatment she was gettting from this naturopath--herself a longterm survivor of serous ovarian cancer, diagnosed when she was in medical school.  (She refused chemo and radiation, taking herbs and natural supplements, earned a master's degree in Chinese medicine and degree in naturopathy and, married to a biochemist, is treating women all over the world with serious and recurrent uterine and ovarian cancers.)

If this were my mother, I would do two things:

First, allow her to make her own decisions.  It IS her decision, not anyone else's, whether to pursue more conventional treatment.  Being "forced" or pressured into already stressful treatment cannot be good for her immune system.  

Secondly, do my own research on alternative (or at least, complementary) treatments.  Alernative treatment would take her to a naturopath specialiing in cancer, such as Nasha Winters (namastehealthcenter.com), who would order many bloood tests and analyze her blood chemistry, prescribing dietary moves and supplements to get her body chemistry ("terrain") back into order to resist a growing tumor.

Complementary therapy would consult an integrative doctor who, if your mother goes ahead with grueling conventional treatment (chemo and radiation) would prescribe supplements to help her body resist its ravages.

I would not have flown all the way from Phila to Colorado last summer had I not been so impressed with Dr. Winters' approach to the disease, her intelligence and articulacy, and glowing reports from two women wealthy enough to have had treatment at the "best" centers such as Sloan Kettering who concluded that Nasha's treatment was far better.

I would contact the Namaste Health Center ASAP and email a report of your mother's current status (73 is NOT very old; she should be able to fight this disease IF she has enough nutritional and other support!).  Once it is in the liver, of course it is quite serious.  But if anyone can help to reverse that course, it is Nasha Winters.

In the meantime, have your mother fortify her intestinal flora by taking a scoop of ProGreens in a glass of water before breakfast each morning and take 500 mgs of curcumin, with meals, three itmes a day.  A good brand is Life Extension's BioCurcumin; another is Pure, availabe online. I migth also start her on three drops of Vitamin D a day ("Liqui-D" available online) until her blood levels are measured; most cancer patients are norribly deficient in this vital vitamin.   She should take the D right after dinner.

Dr. Winters is so swamped with new patients that she now sees them at weekend retreats and is hosting one in October in NOrth Carolina.  Yes, it's expensive--about fifteen hundred dollars for new patients for the entire weekend.  But she will cover a huge amount of information on diet, body chemistry, and how to get the blood tests they need; lovely meals and lodging are included for the weekend.

I would first call her office and explain the urgency of your mother's situation, however.

Another medication that could help your mother but must be prescribed by an integrative doctor is LDN (low-dose Naltrexone), which has nearly no side effects and has helped to slow the growth of several major kinds of cancer.  The ideal dose is 1.5 mgs a night to start, gradually increased to 4.5 milligrams a night before bed.  I've been on it for a year and feel great.

Please get Dr. David Schreiber's book Anti-Cancer, in the meantime, for nutirional guidelines.

 

Best,

Rosey R

 

 

 

 

 

 

 

 

I believe
Posts: 38
Joined: Oct 2012

Thanks a lot Rosy for the valuable and detailed information.

When the doctor saw the results of the MRI (lesion of 4.5 cm in segments VII and VIII of the liver) he was very surprised and he said that something is not normal because in May the results of the CT scan were clean and the MRI report was vague because it mentioned that the liver size is normal and a lesion of suspicious nature is on the liver. In addition, the recurrence of the MMMT in the liver is not very common

THe doctor asked us to do an echo for the liver before doing a biopsy and we did. The results were that the liver size is normal and they are not in a position to be able to clearly see or comment on the lesion.

After discussing the results of MRI and Echo with different doctors, they reahed a desicion that a biopsy is not needed at this point of time especially that there are no strong signs and symptomps that it is a liver cancer and it could be anything.

We asked the doctor if he want us to repeat the MRI again and he said no it want give him further details and its better to do it after 2 months period or do a PET scan now.

We are hesitated now as we don't want to stay worried for 2 months period to wait for the next MRI and at the same time I am worried about exposing my mother to the PET scan radiation especially that in the last year she has done 2 CT scan, 1 Echo and 2 MRIs.

I am not sure if someone on this site had similar case..

Thanks in advance for any thoughts or guidance

 

Alexandra's picture
Alexandra
Posts: 1269
Joined: Jul 2012

Since CT scan, echo and first MRI were inconclusive and according to your doctor PET scan could shed some light on your mother's diagnosis -  I would get it done and not worry too much about extra radiation. I sincerely hope she does not have mets on her liver.

Like others before me I would like to point out that decision to "fight" is your mother's alone. You should be there for her and support whatever she decides to do.

Congratulations to you and your wife on the new baby.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

We all worry about radiation exposures from various scans or xrays,etc.  More goes back to if we do NOT do these type of procedures, what could potentially happen...more tumors aren't detected early and our chance of survival deminish???  These medical devices do save lives, but as well all know "too much of a good thing isn't good either".  

CT scans (equivalent of 400 xrays...wow!) are less expensive, as to why most insurance co's approve this as first round.  As seen on the charting below, has a lot of radiation exposure, vs other procedures such as DEXA bone scans, dental xrays and mammograms.  Note:  MRI's have NO radiation exposure as use magnetic and radio waves to produce images....but very costly.  

 

What are typical doses from medical procedures involving radiation? 

Radiation dose can be estimated for some common diagnostic x-ray and nuclear medicine studies. It is 

important to note that these are only typical values. Radiation doses differ for each person because of 

differences in x-ray machines and their settings, the amount of radioactive material given in a nuclear 

medicine procedure, and the patient’s metabolism. 

 

The tables below give dose estimates for typical diagnostic x-ray and nuclear medicine exams. For 

comparison, in the United States we receive about 3.0 mSv (300 mrem) of exposure from natural 

background radiation every year. The effective dose listed is a comparable whole-body dose from the 

exam. The effective dose is given in mSv and mrem, the SI unit of measure of the effects of ionizing 

radiation on humans followed by the same dose in traditional mrem. 

 

Typical Effective Radiation Dose from Diagnostic X Ray—Single Exposure 

Exam Effective Dose 

mSv (mrem)1

Chest (LAT) 0.04 (4) 

Chest (AP) 0.02 (2) 

Skull (AP) 0.03 (3) 

Skull (Lat) 0.01 (1) 

Pelvis (AP) 0.7 (70) 

Thoracic Spine (AP) 0.4 (40) 

Lumbar Spine (AP) 0.7 (70) 

Exam Effective Dose 

mSv (mrem)2

Mammogram (four views) 0.7 (70) 

Dental (lateral) 0.02 (2) 

Dental (panoramic) 0.09 (9) 

DEXA (whole body) 0.0004 (0.04) 

Hip 0.8 (80) 

Hand or Foot 0.005 (0.5) 

Abdomen 1.2 (120) 

 

The following table shows the dose a patient could receive if undergoing an entire procedure. For 

example, a lumbar spine series usually consists of five x-ray exams. CT stands for computed tomography 

and is sometimes called a CAT scan. 

 

Complete Exams Effective Dose 

mSv (mrem) 1

Intravenous Pyelogram (kidneys, 6 films) 2.5 (250) 

Barium Swallow (24 images, 106 sec. fluoroscopy) 1.5 (150) 

Barium Enema (10 images, 137 sec. fluoroscopy) 7.0 (700) 

CT Head 2.0 (200) 

CT Chest 8.0 (800) 

CT Abdomen 10.0 (1,000) 

CT Pelvis 10.0 (1,000) 

Angioplasty (heart study) 7.5 (750) - 57.0 (5,700)3

Coronary Angiogram 4.6 (460) - 15.8 (1,580)3

2Typical Effective Radiation Dose from Nuclear Medicine Examination 

Nuclear Medicine Scan Radiopharmaceutical 

(common trade name) 

Effective Dose 

mSv (mrem)2

Brain (PET) 15O water 1.0 (100) 

Brain (perfusion) 99mTc HMPAO 6.9 (690) 

Hepatobiliary (liver flow) 99mTc Sulfur Colloid 2.8 (280) 

Bone 99mTc MDP 4.2 (420) 

Lung Perfusion/Ventilation 99mTc MAA & 133Xe 2.0 (200) 

Kidney (filtration rate) 99mTc DTPA 3.6 (360) 

Kidney (tubular function) 99mTc MAG3 5.2 (520) 

Tumor/Infection 67Ga 18.5 (1,850) 

Heart (rest) 99mTc sestimibi (Cardiolite) 6.7 (670) 

Heart (stress) 99mTc sestimibi (Cardiolite) 5.85 (585) 

Heart 201Tl chloride 11.8 (1,180) 

Heart (rest) 99mTc tetrofosmin (Myoview) 5.6 (560) 

Heart (stress) 99mTc tetrofosmin (Myoview) 5.6 (560) 

Various PET Studies 18F FDG 14.0 (1,400)

I believe
Posts: 38
Joined: Oct 2012

Thanks a lot Alexandra and Jan for your comments.

I will try to convince my mother to do the PET scan now to avoid any surprises in the future. I will keep you updated about the results of the PET scan.

I believe
Posts: 38
Joined: Oct 2012

Following the 4.5 cm lesion found on my mom's liver in the last MRI done 3 weeks ago, we recieved today the whole body PET scan results and it is NED!!!!! and the liver is normal.

God answered to my prayers !! and this week was full of great news, first that my wife gave birth to a wonderful healthy baby boy and my mom's NED results of the PET scan.

I dunno how this lesion appeared suddenly on the liver in the MRI and disappeared in the PET scan but what I know is that my mom is healthy and enjoying NED after 1 year of being diagnosed with MMMT.

keeping you all in my prayers!!

 

Ro10's picture
Ro10
Posts: 1483
Joined: Jan 2009

Great news that you Mom is NED.  Congratulations on your new healthy son.  Time to. Celebrate and enjoy each day.  In peace and caring.

ConnieSW's picture
ConnieSW
Posts: 623
Joined: Jun 2012

This IS a wonderful week!

Scoutsmomma
Posts: 2
Joined: Aug 2013

I was diagnosed just over a year ago.  Had total hysterectomy and follow up with pap smears.  Had CT scan last week that shows some "findings".  A small something about 1.5mm.  Dr said maybe a lymph node - maybe a blood clot...  Ordered a PET scan for 9/4.  A little scary - I think I was stage 1a grade 2 - but the 2 was a very low percentage and no further treatment was needed.  I was surprised by the order for CT scan as I thought follow up was only pap smears every 3 or 6 months.  Has anyone out there had results something like this on a CT scan? 

I believe
Posts: 38
Joined: Oct 2012

Hi Scoutsmomma,

My mom was also diagnosed with MMMT a year ago (last september), the last MRI on 26th of July showed a lesion of 4.5 cm on the liver and the doctor requested a PET scan. The pet scan results were NED. Therefore, not everything that appears in CT or MRI is scary.

I hope the findings in your case are nothing also

Scoutsmomma
Posts: 2
Joined: Aug 2013

Thanks I believe - My dr just called with news on the PET showed 2 areas of concern 1 measured 9.1 and the other 4.5 - I believe that is an SUV score???  He is suspicious of more cancer - but he said it could mean infection.  Now have to have a biopsy.  Anyone else with this situation?

 

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