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My mom's 4B care crossroads - Complimentary therapy recommendations needed

strongformom
Posts: 17
Joined: Jul 2011

Hi all,

My mom is 73, with stage 4B UC. She's had a full hysterectomy, then five sessions of Taxol/Carboplatin, and now because they've full a 4c mass in her abdomen area near her omentum, they are recommending more chemo. No surgery or radiation is recommended. The good news is that her CA125 decreased from 95 to 32 with the chemo.

I feel like she's at a care crossroads. She's done quite well health wise with the chemo - no mouth sores, no major neuropathy that I know of, and good weight.

She's been recommended to take Adriamycin which is a stronger chemo treatment. No other drug recommended, just a "lifetime dose". She'll be having a MUGA scan first to show her heart is healthy enough for this chemo treatment as it is known to cause heart damage. Is this a Hail Mary?

She is open to complimentary/alternative therapy - she's doing acupuncture, fresh juicing, exercise, and was told by her doc she's a "poster child for how to do chemo right". I want to understand any other complimentary therapies that could help her.

Anyone out there try that Vitamin C IV therapy I've heard about?

Rice Bran extract - IP6 Inositol hexaphosphate supplements?

Anyone seen a "medical intuitive" or medium/Reiki?

Has anyone taken a break from chemo?

Also, anything you can share regarding helpful tips or symptom relief in particular to her age or the chemo drug is much appreciated!

Thanks!
Jennifer H.

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

You note that your Mom had a full hysterectomy but apparently not what is described a 'debulking' surgery? Was the surgery done by a gynecologic oncologist? And is the 4 cm mass new since her surgery?

Adriamycin may be being used due to worldwide shortage of Doxil which is essentially adriamycin embedded in a liposome - newer and considered more effective with less collateral body damage. Doxil has been the frequently used next line chemo after the carbo/taxol standard treatment. It carries its own set of side effects so not a perfect chemo agent either.

Also, there are several integrative medicine doctors in the area who could provide guidelines for complimentary supplements and therapies.

Annie

strongformom
Posts: 17
Joined: Jul 2011

Hi Annie,

The 4 cm mass is new since the surgery - this in addition to two small nodes. This is in her abdomen near her omentum (we are still waiting for details about exactly where it is), which is the layer of fat in front of the intestines. She did have surgery from a gynecological oncologist, yes.

Thanks very much for your speedy reply. I will look into an integrative medicine specialist for her. We've gotten her some coordinated care from a small firm that also does some recommendations for integrative medicine.

Best to you!
Jennifer

soromer
Posts: 130
Joined: Mar 2011

Is there a good reason why they're not planning a debulking surgery? (Of course, it carries its own risks, perhaps even of helping the cancer metastasize.)

My central complementary treatment now is Ayurveda. Deepak Chopra is the biggest popularizer of this treatment modality, though I don't think he has an active practice himself. I mention his name primarily so that you can do some investigation into the approach to see if it fits.

I am no more able to explain why the treatment methods of Ayurveda (are supposed to) work than I am able to do so for allopathic medicine. I will say that the appeal of Ayurveda to me is that it's holistic in a way that Western medicine emphatically is not. There are several different approaches that exist in Ayurveda; my particular practitioner stresses herbs and essential oils, cranial manipulation, and breath and energy work. I've experienced some very startling immediate responses to treatment--and while I have no way to know whether it has had an impact on my recovery, I do know that I feel better, calmer, and more healthy in the meantime.

I'm also seeing an acupuncturist weekly. I started there primarily for treatment of neuropathy, but I continue because I think the energy work she does is also helpful. I feel better after every treatment. Sometimes I'm very tired, but that fatigue tends to be in proportion to the kind of strain I brought into the appointment. My neuropathy is virtually gone, I should add, and when it does bother me now I think of it as a general barometer about my energy flow body-wide.

I am also seeing a gynecological oncologist on a quarterly basis, as we see whether the Megace I'm on (plus the other therapies) has been effective. So far, so good, as I mentioned in another comment in one of your earlier threads. My oncologist is fairly open-minded about all of my complementary treatments, I will observe. It's easier now that I don't have to worry about the risk of interfering with chemo. But many of my remedies now would still be feasible while undergoing chemo, I hasten to add!

I have had some limited experience with Reiki. The most profound take-away I had from my sessions was creating a limit on my fear and anxiety (which, as you might imagine, were very high in early September). Somehow, there was an internal wall put in place during the first session, and that relative absence of fear has been liberating, comforting, and empowering ever since.

I've also found meditation and visualization to be very effective. Meditation helps because it's centering and calming, and because through it I've become aware of the concept of lovingkindness (metta), which seems to be very, very important for people dealing with life-threatening conditions. As far as visualization, how one does that also varies greatly. My preferred image is to see the tumor clusters as tangles of hair that I see myself smoothing out (with my breath as the "conditioner"). If they're resistant to detangling, then I'll just cut them out--that is, cut off the blood supply to them. Again, who knows whether this is helpful? I do believe, however, that the other possibilities, imagining a worsening condition for example, are probably counter-productive. Hence, I reason, a more proactive approach can't hurt.

The other practical advice I'd offer to your mother is to beware of the sugar content of her juices. Eating raw/unprocessed food is generally good, I think, but taking in large quantities of sugar in any form is probably not helpful. (I wish I'd really understood that before I consumed very large quantities of dairy and ice cream during this past summer!) I've adopted a largely vegan diet myself, after going through a 5-day raw food detox. That was an interesting experience in itself; I'd say its most durable effect has been to make me more mindful (however imperfectly) of my body's response to food.

You have undoubtedly been on this site long enough to realize the wide range of opinions of the women who participate. I won't say much more, other than to stress that while there is disagreement, there is also sincerity. Everyone shares what she thinks is important, and of course it's up to your mother to decide what's best for her. The biggest trouble with this horrible disease, in some sense, is that it is so profoundly individual. There is no cure-all, and what works for one might not work even for another with the same grade, type, and stage.

Well, maybe I'll say one more thing: after my crisis in September, when I found out that the damned disease had spread, I understood more profoundly than ever that my recovery was up to me. The drugs, remedies, treatments I take are not, in my opinion, the cures in and of themselves. They are all instead intended to serve one purpose--to strengthen my immune system enough so my body can muster the defenses to resist this malfunction. To that end, I believe that what I'm doing combines synergistically to promote my recovery and return to health. It's the best I can do, at any rate, and so far the evidence shows good results.

Oops--I'll add one more "treatment," though I take it so much for granted, it doesn't seem like one. I sing on a regular basis. I used to sing regularly, years ago, and fell away from it for a variety of not-so-good reasons. Now I'm back, and I think it's helpful. It takes me out of feeling apprehensive; it reinforces my vitality in the present moment; it helps connect me to other people. It doesn't have to be done in a group to be useful.

And, honestly, I think that prayer helps too. I saw my gynecologist a few weeks ago, after my bad CT and before my good one; she hasn't been treating me since the diagnosis, but she's the doctor who did the D & C and gave me the bad news. That was one of her main comments to me at the time--about the efficacy of prayer--which to some extent I find ironic, and yet also reassuring. In my opinion, the best doctors realize the limits of their knowledge and expertise.

Again, best of luck to your mother. She is so lucky to have her girls (as if she didn't know that already ;)

strongformom
Posts: 17
Joined: Jul 2011

Hi Soromer,

A huge thank you for your detailed info! I have to leave on a business trip tomorrow so I have to keep my reply brief, but I just wanted to tell you how much I appreciate your advice and shared wisdom!!

Best,
Jen

paris11
Posts: 132
Joined: Oct 2010

Where do you live??? I live in Chicago and I fully endorse Reiki. I am seeking more ayurvedic treatment. I am even considering Bangalore.

Thank you.

Connie

soromer
Posts: 130
Joined: Mar 2011

It might be a doable trip for you.

soromer
Posts: 130
Joined: Mar 2011

Maybe you can message me instead?
I could look for some information/referrals for you, but I'm not sure how much I want to share on the public board. I will think about the matter.
Good luck in any case, Connie.
I hope we can be in touch.

soromer/Kate

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I'm impressed with your practice. I was very vigilant with meditation and guided imagery at beginning of treatment ('08) after reading Simonton's "Getting Well Again" book - but admit to being lax now. It should be no surprise to me that I have nodes lighting up. Complacency is not good!!! You are inspiring me to get back to my former good habits and more energy work.

I do participate in weekly Qigong and Tong Ren group healing sessions - a Chinese energy practice. I'm not sure if it has helped me but one of the members has greatly benefited from this and knows firsthand of others with fantastic testimonies. You can learn more at www.Tongrenstation.com

I have talked to my healing touch practitioner and we have agreed to get back to a regular schedule. I have been consistent with exercise but need to lean more toward vegan diet. And, like you, a sing in fantastic chorus. This is so therapeutic to me as well.

Again, you have given me a BIG nudge to be more proactive and vigilant about integrating these practices with western medicine. Thank you!!!

Mary Ann

soromer
Posts: 130
Joined: Mar 2011

You are very welcome indeed.

I've hit a hard patch myself in the past few weeks--partly, I think, just because of relief that my latest news was so encouraging, but mostly because my youngest daughter (age 15) has had a serious emotional health crisis since Thanksgiving that is just now beginning to lift. Understandably, she has been deeply alarmed by my illness, and fearful for herself if something were to happen to me before she is fully grown. (Her father is...well, let's just say he's not a positive influence on her life in any way.) She had her breakdown a couple of days before my last CT, and I think she was just worn out from anxiety and fear. Much of my time in the past two months has gone toward putting better supports in place for her.

Writing all this down reminds me how much I did put into place for myself, and quickly, when I was so shaken by the bad news of September. It also reminds me how much I do honestly enjoy these regimens, and how much they help me on a day-to-day basis.

I will definitely look up the Tong Ren information, which is completely new to me. My qigong experiences now are not personalized treatment in any way, just participation in a twice-weekly class to learn a form (wild goose) and to learn about general immune system support. However, I strongly suspect that the warmups and other exercises we do are of benefit to me. I started this because I wanted to learn how to do the Five Animal Frolics; maybe eventually I'll get there too.

More power and healing to you, Mary Ann, as you revisit the techniques that have been helpful to you in the past. May they be at least as effective now as they were before, and may your next tests bring you better results.

Peace and blessings,
Kate

willbesurvivor's picture
willbesurvivor
Posts: 50
Joined: Jan 2011

Hi Jennifer, my mum is currently on the Gerson Therapy. There is a girl who has been doing it for a couple of years if you want to see her progress www.thewellnesswarrior.com.au. She will need a lot of assistance though.

Tali x

strongformom
Posts: 17
Joined: Jul 2011

Hello Tali,

Thanks for the info about Gerson and your mum's progress. I will check it out. My mom is doing some of this with a juicer at home.

Sending my best wishes for her wellness - I love your pic. :)

Take care,
Jen

RoseyR
Posts: 464
Joined: Feb 2011

Sounds as if your mother is doing really well considering all the assaults on her system.

IF you proceed with adriamycin, you might look into the benefits of taking Co-Q-10 with it to minimize any possible damage to her heart.

I recall that my friend's onc also recommended Vitamin B6 during adriamycin. (50 mgs a day)

In addition: If you're not already seeing an integrative doctor and your mom has further chemo of any kind, you might want to consider the protective effects of the following:

ProGreens (one scoop each morning in a glass of water before breakfast)
Fish Oil (two tsps a day--"Fiinest Pure Fish Oil" by Pharmax is a good brand)
Whey protein smoothies (with a banana or berries--Whey Cool or Designer Whey good brands)

The former two protect the intestines and minimize appetite loss; ProGreens also nourishes. Whey is shown in many clinical studies to prevent weight loss and maximize production of glutathione, a vital substance that is often too low in cancer patients.

Best,
Rosey

strongformom
Posts: 17
Joined: Jul 2011

Hi Rosey,

What else can I say except a huge THANK YOU! I've learned an incredible amount from you and the other smart women here in a very short time frame.

I have a lot of respect for doctors, but I have realized that I've expected too much of my mom's physicians in thinking that they can provide the 360 view of cancer treatment. My mom's gynecological oncologist and supervising oncologist are both technically excellent within their niche, but outside of that, they are indifferent, dismissive, or ignorant of CAM vitamins and supplements, and some key nutrition factors.

This may be a familiar theme, but I'm having to learn this lesson.

Take care!! :)

Best,
Jennifer

strongformom
Posts: 17
Joined: Jul 2011

Hi everyone,

Just wanted to express my thanks again for all your helpful advice. My sisters and I got my mom a phone consult with the Simms/Mann Integrative Oncology center at UCLA for an individual assessment and recommendation of nutrition and supplements.

If anyone is curious, they do phone consultations worldwide, so you don't have to be a patient there to receive the consult and it was well worth the money and we all chipped in for it. It was $350 for 1 1/2 hours, so split between four people it was affordable. I read that they are one of about 40 comprehensive cancer treatment centers in the U.S. that are a "one stop shop" so I'm assuming you can get this type of phone consult from other places as well.

I'm including a link just everyone who might be interested in learning what is included
http://www.simmsmanncenter.ucla.edu/nutrition/section/individual_assessments.asp

I learned from you all the language of cancer treatment - "integrative", "CAM", etc., so I actually knew what to start looking for beyond straight chemo and research it online.

My mom was thrilled with the level of expertise and caring the M.D. showed her and that boost in her morale was great for all of us. This doctor knew all about the various complementary treatments - Vitamin C IV, IP6 (btw - she didn't recommend this as she felt there weren't enough human studies done), etc. Talking to my mom's regular oncologist about any of this was like banging my head against the wall, but this doctor knew her stuff, had a really responsive staff, and connected with my mom on a human level beyond her being a patient.

She misses being able to socialize in groups, and so the regimen of supplements is designed to help her immune system. We're going to get her there.

Take care everyone,
Have a good weekend,
Jen

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