chemo reaction still no better - Chinese medicine?

[Pam P]

New thread same issues....

I've been off the xeloda/tykerb for 8 days now. Still no improvement in mouth sores or fingers, or the most troublesome, swelling around eyes and face. I think the swelling is worse; my cheeks weren't swollen before, just the eyes over and under. I can't even open one eye enough to see well out of it.

Saw onc. last Thurs. so he knows. Talked to onc. nurse yesterday again. No recommended tx except the mouth wash for sores.

My lymphedema therapist worked on my head/neck yesterday & got some swelling to move out but it came back later.

I think my body just got wiped out - toxic - from the drugs and I need to get the immune system to clear out all this swelling etc. My blood tests were all normal - cbc, chemical panel, even vitamin levels, so that's good.

People I know and respect who integrative medicine have suggested I see someone in Chinese medicine for an evaluation & maybe some herbal medicine therapy. I have an appointment with a Chinese Med. Doctor today. I haven't ever done anything with herbs and know nothing about them. I know they always caution about herbs and chemo. Technically I'm not on chemo right now. I told the onc. nurse I was going to see this doc so they know; she said to clear any thing I take with them. I'll let them know but not sure I'll wait for their "permission". Frankly I'd drink elephant pee right now if I thought it would help. I am miserable, just want to sleep, and need to do something to get some improvement and clear this out of my system.

I trust the recommendation of this Chinese doc; former faculty, well respected, etc. not just some herbal store with limited knowledge.

Does anyone here have experience with this type of herbal tx?

I need to get my body back into balance before I can face starting up on yet another chemo either abraxane or tdm1 eap. I have pet/ct scheduled for Friday & from that will know if tdm1 is an option.

Thanks. Pam

[vlcarr]

Hey Pam,

You just sound so miserable and I can understand after reading what you are going through.

I never did herbs but there is an Integrative Health Center at the hospital where I'm treated and the onc like you to go there because they work in conjunction with your medical doctor. I went there for various things during my treatment. They do acupuncture, yoga, relaxation techniques, but I'm not aware they do any herbal treatments so sorry I'm no help with that. Just wanted you to know I'm thinking about you.

Hope you feel better soon.

[Unregistered]

I had mouth sores also and one of the infusion nurses suggested Lysine 1500mg daily. It helped and I take it daily.
Hope it gets better for you!

[ElaineM]

I think you are on to something Pam!! Check it out !!
I have been seeing a licensed naturopathic physican who is also a licensed practioner of Chinese medicine since February, 1999. He is also a licensed acupucturist. I attend lectures by various naturopaths or practioners of Chinese medicine and acupuncturists. My natuorpath has helped me tremendously and I believe he has contributed to my survival.
Just make sure the person you see is well educated and licensed. A licensed naturopath has an N. D. after the name. An acupucturist has a LaC. after the name. A doctor of Chinese medicine has a D.C.M after the name. A doctor who practices integrative medicine should be educated and licensed in both conventional and naturopathic or Chinese medicine. Sometimes they are M. D.s or O.D.s. Integrative medicine is used by the Cancer Treatment Centers of America, M. D. Anderson and Memorial Sloan Kettering and other major hospitals that treat cancer, so there must be good things about it.
Good luck. Take good care of yourself. I have my fingers crossed for you.

[ElaineM]

I thought you might want to check out some professional associations for Naturopaths and doctors of Chinese Medicine where you can learn a little more or find a practioner in your area who meets your needs.
1. Naturopaths
http://www.naturopathic.org/
http://anma.org/

2. Chinese Medicine
http://www.americanchinesemedicineassociation.org/
http://www.aaaomonline.org/

[StephN]

So sorry to hear that things are still so bad.
About the swelling. This also sounds like some symptoms of clotted venus line. I had quite a bit of swelling in my whole face and some in my neck area.

This was from clotted port-a-cath. You may wish to ask for a CT venogram - so they can look at that. I would rule out any such problem.

What tips me off is the therapist could move some of the fluid in your face area and that it came back. Same thing happened to me. I also went for acupuncture and drank herb tea that is supposed to work against swollen tissues. Did NOT work. This is when I went to my internist and the clotting was suggested as a cause.

For the mouth sores, I had to eat a lot of good broth with easy to chew things added. Apple sauce was also good. I had the urge to eat pure butter, as I seemed to crave protein.

Don't know if any of this will help, but was my experience.

[Jackie07]

Pam,

Chinese medicine uses 'Chi' (Yin and Yang, Cold and Hot) to explain things. But the truth is that all the herb formulas cumulated/passed down for thousands of years have been 'experimented/tested' for thousands of years.

It's like when doctors figured out using the Pacific Yew tree barks to make Taxane, they have to extract it and experiment with it.

Many medical centers (around the world)have been testing and extracting the ingredients off the traditional Chinese medicine to figure out why/how/if it works as was described (in the Herb medicine bible compiled about 500 years ago.)

Like any other (traditional western) medicine, you need to watch out for allergic reactions to any new drugs. Yes, the herbs are drugs in the less purified form. And it is sometimes much harder to figure out the culprit in Chinese medicine because the 'prescription' typically contains more than 8-10 ingredients. Many of the additional herbs are used to lessen stomach issues and improve the taste of the drug.

Hope your appointment went well today.

[Sheila]

Pam
Hoping that you can get to the bottom of the swelling....I wouldnt take anything without running it past the oncologist....you are in my thoughts that you can begin treatment, successful treatment soon.

[Rich66]

Steph's port suggestion sounds important to follow up on.

Does your mouthwash have Nystatin?

I haven't seen anything on "elephant pee". But there is some research on "Elephant's foot (http://her2support.org/vbulletin/showthread.php?p=222137#post222137)"

You could look for a local onco-NP here (http://www.oncanp.org/)

[ElaineM]

Interesting points Jackie. Many conventional drugs had natural sources which scientists manipulated to make drugs that could be mass produced or combined with other products to make new drugs. I remember when Taxol was being developed. Environmentalists were protesting the use of the Yew Tree. I had no connection to cancer at that time, but I found the whole issue very interesting at the time. Taxol originated from the bark of the Pacific Yew Tree. Taxotere originated from the needles of the Pacific Yew Tree. Navelbine originated from the Madagascar Periwinkle. I have a periwinkle plant which I am growing as an experiment. Even plain old aspirin originated from the bark of the willow tree. I think the evolution of natural products into many uses is very interesting.
Chinese medicine has been used for many thousands of years to treat patients with mostly natural products.
Yes. Rich. There is a specialty in naturopathic medicine devoted to oncology. Just like other doctors many naturopathic physicians specialize in specific areas of medicine. It is good to find one who specializes in the area we need help. Good link. I added it to the links I use for naturopathic medicine.
My belief is that one doctor no matter what specialty that person has does not know everything about everything. That is humanly impossible.
Good luck Pam. I know you will make the right choices for yourself. Take good care of yourself.

[Pam P]

port - clot: When I saw the doc a couple of weeks ago they checked my neck/chest looking for any sign of vein issues. I called the onc. nurse today to ask if somethings else should checked - she said in the report they had also checked my 7/10 pect/ct and all looked okay with port/veins. But she said she'd ask the onc. again. I'm waiting for a call back.

In the meantime nothing is better yet. I saw the chinese doc yesterday. He did acupuncture on me and gave me a powder of herbal mixture to drink as a tea 3 times a day. I gave the list of these to the onc. All Chinese words - about 8 different herbs - I don't know what they are but am trusting that they might help something. I see him again Fri. for more acupuncture - which I hate - the needles hurt.


Rich --- I'll check on the elephant foot!!!

[Pam P]

Rich - the mouthwash doesn't have nystatin. I asked onc. about that but was told that's only for fungal and mine isn't (how does he know?) The "magic mouth wash" I have is 1/3 each of maalox, benedryl, lidocaine.

[ElaineM]

Did the oncologist do a "culture" of the area of concern in your mouth? That is how they can tell if it is fungal or not. Also some doctors know just by examining an area.
The acupuncture needles are not really supposed to hurt too much. I guess it depends if the acupuncturist decides to turn the needles to treat a deeper problem in a specific area. The only time my naturopath/acupuncturist hurts me is if he hits a nerve or a muscle. He apologizes and adjusts the needle. This doesn't happen too often, thank goodness. Acupuncture needles don't go down as deep as injection needles go. Your body might be a little more sensitive, because you are going through so much right now. Hopefully there might be less pain as time passes.
Take care.

[Pam P]

Now I've had a port dye study which was fine and an ultrasound of my neck & upper chest area - no visible clotting. So that's good. So hopefully this rules out any blockage for the swelling problem.

Swelling is still bad; mouth sores and fingers seem slightly better today.

I had another acupuncture tx today - needles still hurt. When feeling my pulse his comment was 'your energy is very bad' -- yeah, I know that.

I had pet/ct scan this a.m. Hopefully will know results by late Monday. If no progression (I hope) then I guess it's abraxane when I get over these reactions.

I'm really bummed about the news of the delay in tdm1 approval. Pam

[vlcarr]

I hope you get great news on your scans. I always wondered if those needles hurt.........

[Jackie07]

I remember when my Mother was having acupuncture treatment almost 40 years ago, she got bruises on the back of her hands quite a bit.

During my chemo in 2007, my 2nd Sister brought me ingredients and formula to make 'cultivating-life soup'. It has dried red dates, Hua-chi-seng (a mild type of ginseng), Go-chi seeds, Dangseng. It's a very mild drink - improved my appetite right away. You might want to ask your acupuncturist about it.

[Pam P]

Vicky - I don't want to dissuade anyone from acupuncture. Not all the needles hurt - but some do a lot on me. Some people say it doesn't hurt at all. Everyone's different. Plus I'm needle phobic to begin with and I'm sure that doesn't help.

[ElaineM]

You are right Pam. Acupuncture doesn't hurt most of the time. Everyone's Pain level is different. It might be true that the person doing acupuncture is hitting a sensitive area that has been previously injured or affected by your health problems or treatments.
As long as you are getting some benefit from the acupuncture needles placed in other areas that is what counts. I wonder if putting a little numming cream (lidocream) on the areas that hurt an hour before your acupuncture treatment would help?
Also your doctor of Chinese medicine should be open enough to explain to you what is in any teas or other things he or she prescribes. We want to be sure that there are no negative interactions between those things and the things our other doctors are prescribing.
My naturopath explains everything to me and even checks to make sure the things he prescribes are not interferring with other things I am taking. I have found a couple reliable websites were I can check drug to drug or drug to supplement or drug to food interactions myself. I bring my M. D.s up to date about what I am doing with my naturopath. One of my M. D.s is even working on a project with him on my behalf. All in all I think my naturopath/doctor of Chinese medicine/acupuncturist has contributed greatly to my survival.
Good luck. Take good care of yourself Pam. I have my fingers crossed for you. I wish you well.

[Pam P]

Now I have a new problem! The swelling in my face is no better, but no worse. But I now have swelling in my left arm - the one that doesn't (didn't) have lymphedema. It's huge and hard. I don't know what is causing this, I've never had any problem in this arm before. My right arm that is affected is also bigger than normal. I can't tell if my trunk is swollen or not, if so, only slight. My legs and ankles seem the same.

I did have IV and acupuncture needles in my "good" arm yesterday and sure hope that didn't create a problem. Of course it's the weekend and no one I can see for help.

My mouth sores seem a bit better - one good thing.

Could this ongoing edema still be from chemo reaction - is that possible? I don't know what else it could be. And will it ever go away?

Thanks, Elaine for your info. I do have a list of the chinese herbs and gave them to my onc. I need to look them up myself too but haven't done it yet.

[Rich66]

Have you had a recent muga or ekg?

[Pam P]

Rich - no recent muga - I think it was last Jan. - all was fine then. I don't feel any shortness of breath or pain etc. in chest.

[ElaineM]

If your oncologist and if a lymphdema therapist/specialist doesn't know what is causing the swelling maybe your Chinese doctor could could check it out for you.
Swelling/inflammation can increase the CEA/CA 27-29/CA 15-3 tumor markers, so getting the swelling and inflammation under control might help bring down those numbers a little.
If one doctor/medical professional doesn't know what is causing a problem I often ask the next doctor on my schedule even if that person is in a different specialty of medicine. All doctors build up their knowledge base by working with a variety of patients as well as going to conferences and doing research. I am constantly surprised by some of the things my various doctors know even if the problem is not exactly related to their specialties. My dermatologist knows quite a bit about naturopathic medicine. My naturopath is her patient occassionally. I guess when one doctor becomes the patient of another one they chat and share information with each other. They sometimes work together to help me with a specific problem. This has been a blessing.

[Pam P]

Elaine - It is wonderful for doctors in different specialties "cross over" and learn from and about other methods, After all we are whole beings and should be treated as such, The Chinese doc knows about the swelling and some of the therapy he is using is supposed to address it. That doesn't mean he knows what is causing it either. I'm just praying that after all they don't come back and find that this is the cancer flaring up in some unusual way.

[ElaineM]

Gee. I hope it is NOT the cancer that is causing the swelling.
I am glad your Chinese doctor is trying to help you with the swelling.
Take good care of yourself and keep putting one foot in front of the other. You are doing a great job. Hang in there Pam !!