Complimentary treatments adjuvant to Chemotherapy or as a stand alone treatment

Zena 2020

I am 58 years old woman who lives in Toronto, Canada. I underwent surgery on October 19/20 , for preoperative diagnosis of serous cancer of the endometrium. This included a laparoscopic hysterectomy, bilateral saplingo-oophorectomy, bilateral pelvic sentinel lymph node dissection, paraaortic node dissection on the right side and omentectomy. 

Post-operative diagnosis:

The tumor invaded less than 50% of   myometrial thickness but did have extensive MELF pattern of invasion.

 

The Cervix, bilateral tubes and ovaries as well as omentum were negative.

However, 1 /3 right pelvic sentinel lymph nodes had isolated tumor cells, 1/1 left pelvic sentinel lymph node had metastatic carcinoma, 0.5 mm and 1/1 right paraaortic lymph nodes had micrometastatic carcinoma of 0.4 mm.

 

Therefore is a stage lllC2 high-grade adenocarcinoma of the endometrium. 

 

Chemotherapy is recommended to reduce the risk of recurrence: 6 cycles of IV Carboplatin and Paclitaxel follow by Radiation Therapy. 

Chemotherapy is to start on Monday December 7 /2020.

I am having a hard time to accept treatment plan with such an old (40 years old) and so so toxic drugs! Any of you ladies who had similar to mine diagnosis looked into complementary treatments either adjuvant to Chemotherapy or as a stand alone treatment and if so please share your research/outcome of it. 

Since the time is of the essence I would appreciate as prompt response as you possibly can. Thank you all in advance, your input and support it’s very valuable... thank you again for sharing. ?

Kaleena

Treatment

Hi Zena:

Sorry you have to go through this.  I was 45 at the time they found my cancer after a hysterectomy.  I had it in my uterus, cervix and left ovary.   Because they couldn't determine a primary, they treated it as Ovarian but listed it as Grade 2, Stage 3a Endometrial Adenocarcinoma.   The treatment regiment was Carbo and Taxol for 6 cycles.  I was allergic to Taxol so they gave me Gemzar and Carbo.  I had to go every two weeks for 6 months as they gave Gemzar every 2 weeks and Carbo once a month.  Then I had 3 HDR Brachytherapies.    The chemo was a preventative treatment.   They were going to radiate my pelvis but there was a great discussion between the Oncologist and Radiologist.  The Radiologist indicated that pelvic radiation would be detrimental to me due to how much scarring I had.  He was right.

I am glad I did the treatment because I would have worried about every pinch or pain I had.   I have had two recurrences since then but heck its been 15 years since I was diagnosed!  With the Gemzar I did not lose my hair.  It thinned and it seemed I lost hair on my legs.

With my last two recurrences, I did have a few positive lymph nodes but I didn't have any treatment because all positive masses were removed and so were the lymph nodes so I am on a watch and see approach.

Be sure to get yourself some popsicles.  It will help you to stay hydrated.   They have new kinds of drugs to give you.  Antinausea, etc.  The main thing that I had was extreme exhausted two days after chemo.   It just hits you.  

All my best on your upcoming treatment.

Kathy

MAbound

Healing medicine

Hi Zena, our diagnoses are pretty close to each other. I was stage 3a, grade 3 endometrial adenocarcinoma at diagnosis when I was 59. I had one positive pelvic lymph node on each side, but my para-aortic nodes were negative. I had 70% myometrial invasion and cancer in an ovary and fallopian tube. My cancer originated near the neck of the uterus. It's been four years since I've finished frontline treatment and I remain NED (no evidence of disease).

My frontline treatment was the same as what is being proposed for you, but they did have to tweek it a bit because the Taxol was too much for me and they switched me to taxotere for 5 of my infusions. Chemo treatment has come a long ways since the dark ages that you are thinking of and they have a lot of tricks in their bag now for getting you through most of it more comfortably. It's not fun, but it is doable. The worst is the anticipation of what it's going to be like, so once you have the first infusion, you'll probably be ok unless you have other underlying health issues. Chemo is a systemic treatment; it's value is that it can get stray cells that were missed during surgery.  You have an advanced stage, high grade cancer, so I'd advocate throwing the kitchen sink at it during frontline treatment. Once it metastasizes, it becomes more like a chronic disease that would mean repeated rounds of treatment to keep it at bay and you want to give yourself a chance to avoid that.

The drugs are toxic to a degree, but they time giving them so that they favor going after cancer cells when they are at their most active. It really helps to think of it as healing medicine that has a lot of potential side effects, like they list on tv commercials these days for other drugs, but they don't all happen to all people. They seem to have a handle on mitigating the most common ones, like nausea, with meds they give along with the infusions and there is a lot of information on this board about dealing with some of the others like constipation, fatigue, preventing neuropathy by icing your extremities, and tips about hair loss. I never had any nausea, but the constipation required drinking tons of water and taking Miralax to keep it under control. You have to plan on giving in to rest when you are fatigued, but the worst of it is usually only for a couple of days for each infusion.

Complementary medicine can be helpful for getting through treatment and there are lots of posts here that discuss it. The two are not mutually exclusive and can be utilized together. Be sure to run anything you ingest by your oncologist first because there are some things, like anti-oxidents, that need to be held during treatment so as not to interfere with the cancer cell activity that the treatments are targeting. Ideally, you should seek out the guidance of a naturopath that specializes in cancer treatment if you go that route. It's also a good path to look into after frontline treatment if you wonder "What's next?" at that time.

Good luck to you as you go through this. Keep reading here and feel free to ask about anything.

 

Molly110

Zena, I'm so sorry that you

Zena, I'm so sorry that you find yourself here.

I was diagnosed last year with stage 1 uterine papillary serous cancer (UPSC) and had 6 rounds of the same chemo that you've had recommended for you, following robotic surgery. Concurrent with the chemo, I had 5 rounds of bracytheraphy, which is internal vaginal radiation. I started that as soon as I had time to heal from the hysterectomy, once a week for five weeks. I was terrified of both chemo and radiation and shocked to learn that these barbaric drugs are the best that modern medicine have to offer. Because UPSC is agressive, my choice was essentially do chemo or have a high chance of dying. So I did it, and it was *nowhere* near as bad as I had feared. I was never sick or nauseated and was able to work full time throughout my treatment. Not everyone has such an easy time of it, but I wanted to let you know that some people do and also wanted to echo what MABound said -- although the drugs may be old, your care team will know know so much more than used to be known about how to help you manage the side effects. Fear of the unknown was the worst aspect of chemo and radiation for me, and that passed as soon as I'd had one of each. The other really difficult part for me was, and still is, losing my hair. But for me, with UPSC the choice was between losing my hair or dying. 

Because I had early and serious damage to the nerves in my hands and feet -- a common side effect of this drug regimen called chemo-induced peripheral neuropathy -- I started twice weekly acupuncture. It doesn't work for everyone, but it worked well enough for me that I was able to stay with the drug regimen I started on rather than having to switch to something else. I still go twice a week. There are many discussions on the board about "icing" hands and feet to prevent neuropathy, and I urge you to look into that. It's important to start before your first chemo. Had I known about it and started it for the first round, I might well have had no damage. Not everyone gets neuropathy, but I think most women on the board would recommend icing because there is no way to know in advance if you will or won't be affected.

I also took many supplements throughout treatment to help with the neuropathy and still take several. As MABound says, be sure not to take anything at all without clearing it with your gynecologist/oncologist or cancer nurse practitioner. Many ordinary vitamins can interfere with the effectiveness of chemo. Things that you may consider helpful and harmless -- like antioxidant vitamins -- can protect the cancer cells from the chemo. 

I finished chemo in January 2020, and despite the neuropathy and still very short hair (mine is growing back at a glacial pace), I feel really lucky to feel strong and healthy with a much better chance of surviving than had I not done the chemo and radiation. I think you're smart to look into complementary/integrative approaches. Accupuncture, massage therapy, aromatherapy, and supplements (cleared with your care team) are just some things that can help. At my cancer center, many of those things are free (unfortunately not accupuncture), and I assume that the Canadian system is at least as good as the US system when it comes to complementary/integrative care.

I'm relatively new to the board, so I'm not the best person to say this to you, but since some of the more experienced posters may not be active during the holidays, I'll go ahead and say it directly: there is no stand alone treatment that can replace the chemotherapy and radiation that is the standard of care for your cancer. One of the more experienced posters puts it this way -- there have been several women posters who decided to do alternative therapies rather than the chemo and radiaton their physician recommended. Unfortunately, they are no longer around to tell you how it went.

I hope many more women see your post, as I know they will have a lot of really good information and advice to share.

Warm best wishes,

Molly

 

 

 

zsazsa1

Zena, I was very similar to

Zena, I was very similar to you.  I was diagnosed a little over 2 years ago with UPSC/clear cell.  Surgery was about 26 months ago.  I had only one sentinel node taken on each side, with isolated tumor cells in one of the sentinel nodes. They didn't sample any other nodes, so I was afraid that I could have other node involvement, as you in fact did.  I was 57 at the time of diagnosis.  I had my tumor tested for Her2Neu status, and qualified for trastuzumab, which was added in to the standard carboplatin/taxol 6 treatments.  I was supposed to have only vaginal brachytherapy, but because my tumor was in the upper uterus, and because of the isolated tumor cells in the one sentinel node, I pushed the radiation oncologist into doing whole pelvic IMRT treatment (radiation that's shaped to try to hit the lymph node beds).

I am an MD and did a tremendous amount of reading, contacted leading specialists in gyn radiation onc and gyn onc chemo, in addition to the local oncologists.

I would strongly urge you to go ahead with the recommended chemo and radiation asap.  It is what gives you your best shot at survival.  The women on this board have been tremendously helpful, in terms of both information and support.

If you go ahead with the chemo, I urge you to immerse your hands and feet in very cold water during the taxol infusion.  It seems to prevent the taxol from causing as much nerve damage in the hands and feet.  I felt that cold booties and mitts weren't cold enough - I think someone else related the same thing.   If you go ahead with the pelvic radiation, starting a probiotic a week before the radiation is begun, and taking it all through the treatment (usually about 6 weeks), seems to help with the diarrhea caused by the radiation.

The treatment goes by faster than you think, it is VERY do-able, and afterwards, your hair grows back fast, and you feel as if you did everything that you could.

Molly110

zsazsa1 said:

Zena, I was very similar to

Zena, I was very similar to you.  I was diagnosed a little over 2 years ago with UPSC/clear cell.  Surgery was about 26 months ago.  I had only one sentinel node taken on each side, with isolated tumor cells in one of the sentinel nodes. They didn't sample any other nodes, so I was afraid that I could have other node involvement, as you in fact did.  I was 57 at the time of diagnosis.  I had my tumor tested for Her2Neu status, and qualified for trastuzumab, which was added in to the standard carboplatin/taxol 6 treatments.  I was supposed to have only vaginal brachytherapy, but because my tumor was in the upper uterus, and because of the isolated tumor cells in the one sentinel node, I pushed the radiation oncologist into doing whole pelvic IMRT treatment (radiation that's shaped to try to hit the lymph node beds).

I am an MD and did a tremendous amount of reading, contacted leading specialists in gyn radiation onc and gyn onc chemo, in addition to the local oncologists.

I would strongly urge you to go ahead with the recommended chemo and radiation asap.  It is what gives you your best shot at survival.  The women on this board have been tremendously helpful, in terms of both information and support.

If you go ahead with the chemo, I urge you to immerse your hands and feet in very cold water during the taxol infusion.  It seems to prevent the taxol from causing as much nerve damage in the hands and feet.  I felt that cold booties and mitts weren't cold enough - I think someone else related the same thing.   If you go ahead with the pelvic radiation, starting a probiotic a week before the radiation is begun, and taking it all through the treatment (usually about 6 weeks), seems to help with the diarrhea caused by the radiation.

The treatment goes by faster than you think, it is VERY do-able, and afterwards, your hair grows back fast, and you feel as if you did everything that you could.

Icing

Zena, I would add about icing that you may want to look into icing during the carboplatin infusion as well. I had one chemo round that was carobplatin only, and I didn't use the cold mitts and booties because I thought I only needed to be concerned about the taxol. That was the cycle where I developed the neuropathy in my feet that is with me still. Carboplatin is less associated with neuopathy than taxol, but neuropathy is a side effect of carboplatin for 10-29 percent of people who get it, and I was one of them. The carboplatin infusion is pretty short, so it won't extend your icing time by much. (I am someone who used the cold mitts and booties used in the research, but I wish I'd known to ice instead, as ZsaZsa describes. I think the mitts in the research were much colder than most of us can manage in our freezers.) If your cancer center doesn't ice -- and mine doesn't -- you may have to bring your own ice, but the nurses and techs will help you with it. 

Before I started chemo on September 19 last year, the idea of having chemo every three weeks until January 10 seemed like an eternity. But instead, the time really flew by. It stinks that you have to go through it, but as ZsaZsa says, it is doable and then it's over.

Best wishes,

Molly

zsazsa1

Molly110 said:

Icing

Zena, I would add about icing that you may want to look into icing during the carboplatin infusion as well. I had one chemo round that was carobplatin only, and I didn't use the cold mitts and booties because I thought I only needed to be concerned about the taxol. That was the cycle where I developed the neuropathy in my feet that is with me still. Carboplatin is less associated with neuopathy than taxol, but neuropathy is a side effect of carboplatin for 10-29 percent of people who get it, and I was one of them. The carboplatin infusion is pretty short, so it won't extend your icing time by much. (I am someone who used the cold mitts and booties used in the research, but I wish I'd known to ice instead, as ZsaZsa describes. I think the mitts in the research were much colder than most of us can manage in our freezers.) If your cancer center doesn't ice -- and mine doesn't -- you may have to bring your own ice, but the nurses and techs will help you with it. 

Before I started chemo on September 19 last year, the idea of having chemo every three weeks until January 10 seemed like an eternity. But instead, the time really flew by. It stinks that you have to go through it, but as ZsaZsa says, it is doable and then it's over.

Best wishes,

Molly

Thanks for posting this,

Thanks for posting this, Molly.  I had no idea that the Carboplatin could also cause neuropathy.  I used to keep icing until the carboplatin was over, too, just because I figured that it kept the taxol out of my hands and feet a bit longer.  Glad I did now!  I too had only carboplatin for the last session, didn't ice, but didn't experience any neuropathy that I could blame on that last carboplatin infusion.

Molly110

zsazsa1 said:

Thanks for posting this,

Thanks for posting this, Molly.  I had no idea that the Carboplatin could also cause neuropathy.  I used to keep icing until the carboplatin was over, too, just because I figured that it kept the taxol out of my hands and feet a bit longer.  Glad I did now!  I too had only carboplatin for the last session, didn't ice, but didn't experience any neuropathy that I could blame on that last carboplatin infusion.

My guess, ZsaZsa, is that

My guess, ZsaZsa, is that most of us don't know it, because the carboplatin neuropathy percentage is so much smaller than with taxol. Even with gyn/oncologists, I think the general sense is that carboplaton has been such an improvement on cisplatin in terms of side effects that there tends to be an underestimate of the side effects of former. My brilliant and highly experienced gyn/onc has never had a patient before me who got ringing in her ears from carboplatin, although he's had many with that side effect from cisplatin. My sister teased me that I got so many rare side effects from treatment for this rare cancer that I should probably play the lottery.The ear thing isn't really rare, though, for carbplatin, just very much less likely than with cisplatin. Fortunately, the ringing and buzzing for me is very slight, doesn't happen often, and doesn't last long when it does. I kind of expected it would be gone by now, though.

Fingers crossed that the pain you're experiencing is from a benign cause and goes away soon.

Molly

BluebirdOne

Molly, this is why we are here.

The collective and cumulative knowledge that we can pass on to others. Thanks!

 

xoxo ?

Denise