Mets to lung, liver & bones

[chandi2186]

Hi !

I have entered the 12th year of survival on 12.09.2005. I celebrated 49th Bday in last March.

Its really a coinsidence that I was first diagnosed and warded to a hospital where I had mastectomy on 12.09.1994 and this year I was warded for the complications of the disease progression.

I completed one year herceptin to last April with Xeloda in addition to Femara for liver and lung mets and started alone Navelbine & Aromisine.
After the 4th dose of Nevalbine I became very ill with severe cough, vomitting, vocal code paralyse and I also was hit by a viral flue.
Started herceptin again since 30.06.05, but my QOL is at very low right now for shortness of breath and confined to the bed.
Can I recover from this ?
Any input that you may feel will help me at least to improve QOL please.

Blessing to all,

Chandi

[Gina]

Yes, YOU can recover AGAIN...it won't be easy, but it is possible. First of all, congratulations on your amazing longevity. I am sure you are aware of how rare and wonderful you are. I myself am soon to start on my 9th year of multiple mets survival 11-07-2005 will be my anniversary date. I credit Herceptin alone WITHOUT CHEMO coupled to a healthy diet and certain basic supplement regimen and walking regularly in the sunshine to my continued good health, although I continue to take Herceptin every six weeks as maintenance. I would have a lot of suggestions to offer in using herceptin alone as a rescue drug that would be similar to those I have made elsewhere on this site, but first, I would like to know if your are ER-PR-and her-2 +++ as that is what I am and the her-2 area with which I am most familar. I have helped many people with her-2 and other cancers for free, here in the DC area. One of my new her-2 friends was in a really bad shape (5 open lesions oozing blood from her scar, multiple lesions in good breast, total lymphedema in left arm, extensive bone, liver, and lung mets) when she phoned me on Sept. 2, 2005 and was admitted into hospital on Sept. 3. Yet, from her hospital bed with her husbands good help, she bravely began following my advice by taking a good strong loading dose of Herceptin Alone WITHOUT PRE-meds, very important, and using the diet and regimen coupled to the Herceptin and has recovered enough in only 15 days to actually be walking outside 2 and 1/2 blocks unaided this morning. The oncologists at Georgetown are stunned as no one seems to understand the power of herceptin when used alone...they all want to mix it with chemo junk (I have taken no chemo since 1998 --fyi..so I practice and live what preach). The water in her mets- filled lungs is receding and the lesions on her skin are crusting over and closing up...with only 2 herceptin doses so far. This is not fiction. I can arrange for you to talk with the lady by phone, if you like. This is the power of herceptin when used to its maximum efficiency. I suspect the herceptin you have just started taking is actually already working under the radar...you should start to feel better soon, but as you know, you have a high tumor burden right now...do you know what any of your tumor markers are...?? Goodluck to you and KEEP FIGHTING. I KNOW you can do this AGAIN...you are BETTER equipped after wrestling with the beast for 12 years than almost any other of us. Please take care, GPopp@Comcast.net--Gina

[StephN]

Dear Chandi -
I think you are the same Chandi who used to post here??

Desole to hear that you are having some progression and complications from being on the low end of germ fighting. They must have given you some very good antibiotics or something to give your immune system a boost. Bet this is already helping.

I agree that maintenance Herceptin is very important, and hope they let you stay on it once you get these current trouble spots under control.

Let us know how you are doing, OK?

Best wishes to you for healing.

[al from canada]

Dear Chandi,

Kudos to yourself and Gina for your ability to survive.

What you don't tell us in your post is if you have active mets. If you don't then that requires help beyond oncology however if you have mets (and you need to get tested to find out) then you need aggressive treatment! A very small percentage of patient's mets respond to herceptin (H) as a single therapy; however, there are so many clinical trials and other proven herceptin + chemo combinations that personally, if you were my wife, I would try H + chemo first. You had a bad reaction with Navelbine but that shouldn't preclude an attempt to try other chemo combinations; such as H. + avastin, one of the lapatinib trials, H + Abraxane (here is a link to the study:

http://www.breastcancer.org/r_0502d.html ), etc.

Here is a link to the multitude of combinations available to you;

http://www.cancerbacup.org.uk/Treatments/C...binationregimes (http://www.cancerbacup.org.uk/Treatments/Chemotherapy/Combinationregimes)

Gina, I would love to hear more about your background as you have a very unique percpective into this disease and its treatment. Are you a research professional, an oncologist, naturopathic or homopathic dr., ??? I ask because I like to think outside the box and appreciate others who do as well. You mentioned consulting to other B.C. patients, your research, helping people for free; that being said, you have to establish credibility before you can expect acceptance.

Again, please tell us about yourself because if what you say is true, we need to further investigate. Keep in mind that diffent patients respond to different treatments.

Al

[joy]

Thank you for allowing me to give back some support, Chandi. Yes you can recover from this. I think Gina's advice is incredible and encouraging. I am also a firm believer in SUPPORTING the body while the drugs have to tear it apart. Acupuncture, healing touch, massage, nutrition, friends and laughter do that. These things make such a difference and i so hope they are available to you. It sounds like your body needs a lot of support right now and with it you can rally. So please do and be so kind to yourself. Please keep us posted.
Love, joy

[Unregistered]

Hi, Chandi, I was really struck by your listing of your symptoms. Let me tell you why. I was originally diagnosed in May of 2001, ER- PR-, HER +3 and I had a mastectomy, chemo, radiation and was in a Herceptin trial where I received Herceptin for twelve months. I was symptom free from January 2003 to February 2005, when I developed a cough and asthma-like symptoms and eventually lost my voice. I suspected asthma/bronchitis and eventually an ENT doctor diagnosed a paralyzed left vocal cord and ordered CAT scans. They showed tumors in my liver and lungs, including the area of the mediastinum, where it seems the nodes or tumors pressed on the nerve leading to the cord, causing the paralysis.

Is yours the left vocal cord? I understand that the right vocal cord doesn't have a nerve that descends into the vicinity of the lungs so I gather that if the paralysis is caused by cancer, it would be the left cord that is affected.

Besides having no voice, I was still coughing, and was extremely short of breath. The ENT doctor said the coughing came from aspirating liquids and food, that the vocal cords were not protecting my airway and I had to expel these things. He didn't explain the shortness of breath--I think I had to work so hard to be understood, I ran out of air.

So I started chemo, coincidentally with Navelbine, combined with Herceptin, in May. The oncologist advised me not to have a procedure to restore my vocal cord function until we saw what chemo might do. In July I had a PET scan showing that the tumors in the lung/mediastinum area had all but disappeared and that the liver tumors had decreased. But I still had no voice. In August, I went for a procedure in which the ENT doctor injected Cymetra into the vocal cord, and it was only partially successful. (Had it been, the effects would have been good for 3-6 months, not a permanent voice restoration--since there is a chance the voice may be restored naturally.) I gained some vocal power (still am very hoarse), and I am no longer as short of breath as I was. I still cough a lot. The doctor wants to repeat the procedure. I was hesitant. I saw a second doctor for another opinion, and he endorses my having it again. He said it is difficult for doctors to gauge the precise amount to inject, and they are apprehensive of overfilling the cord because it could interfere with breathing. It often has to be redone, he said. He explained that with damage to a nerve, it takes a day for it to regenerate 1 mm of length, and there is quite a distance from the mediastinum to the vocal cord. He said I might even have to have the procedure another time before we see whether my voice will be restored naturally. If it is not, after about a year, there is a decision as to whether to have an operation involving cutting into the throat and implanting a piece of plastic to close the gap and restore vocal function.

Let me know if you have any questions. I am scheduled for my second procedure on September 28. I sure hope it resolves my cough. I am so tired of it. It may be that the Navelbine adds to the coughing, but I don't think it is the primary culprit.

After all you have been through, you can beat this, I know it.

Cathy Carter