Mom's PET/CT results and a ?

[Tom]

The waiting is over. We got Mom's PET/CT results at the end of the day yesterday, but I was just too exhausted to sit down and post.

The PET/CT showed that not only was there no sign of current malignancy, but that the questionable suspicious areas from her last PET scare, have resolved themselves. I sat stunned as the oncologist reviewed the results. Unlike most of her previous test results, I did not go get them ahead of the oncology appointment. For some reason, probably fear and anxiety, I decided to give myself an extra day of "peace" by not obtaining the results personally. It really made me think this time, about the anguish that the women on this site go through while waiting for their results of various diagnostics. My guts were in a knot. I couldn't eat. I couldn't sleep. My mind raced around the clock, plotting and planning what we would do if we got bad news. After all, Mom has not received any Herceptin since the beginning of July due to low LVEF. I compare that waiting time to walking aound holding a live grenade in my hand with the pin pulled.


But after all of that, I sat limp and spent in the chair as I heard the news that there was no sign of any cancer for now. This is a far more cruel journey than I had earlier realized. God Bless all of you that go through this alone. I can't even imagine what it must be like to be the patient and sit in the waiting room. It explains some of the "10,000 yard stares" I see on patients' faces from time to time in the oncology office.


Even the doctor seemed perplexed that there have been no metastases, considering the fact of course, that 12/20 positive nodes were removed last April, a full 8 months after her original surgery to remove several tumors and an area of chest wall involvement, as I'm sure most of you are sick of hearing about by now. Don't get me wrong. I'm not complaining. But what in the world is going on with Mom's disease? It just doesn't make any sense after reading some of the courses of disease that occur with women on this site. Many women who have had the "Full Monty" of chemotherapies week after week, that hammered them like a circus clown's oversize mallet, have metastases and recurrences in many cases.

[Tom]

Remember that Mom has had NO conventional chemotherapy. I have to ask myself the question: Is there something, anything, beneficial about Mom NOT having received conventional rounds of powerful chemotherapy drugs, only Herceptin alone as a single agent? Is all of the nutritional and supplement intake really helping suppress the cancer? Is the curcumin really inducing apoptosis in any remaining cells? Is the green tea and green tea extract really acting as a tyrosine kinase inhibitor? Is the inositol hexaphosohate really doing it's job by inhibiting PI3K?

I'd love to know the answers to these questions, particularly if it might help somebody else fighting this damned disease. I'd love to hear what a researcher has to say about someone being treated with Herceptin alone from the time of first diagnosis. I know they have precious little data with respect to someone in my Mom's position, as nobody would dare forego the standard treatment protocols in the interest of furthering clinical research, and I can't blame them.


I just have this knawing feeling that there is something going on here that somebody doing the research needs to know about, but I don't quite know who to contact. They would probably laugh me out of the office if I walked in with such questions anyway. And I dare not suggest to any scientist or medical person that God Almighty had a hand in my Mother's rather strange disease course...lol.

[Tom]

Well, that's the story. I thought it might offer some hope to somebody out there going through this mess to hear just how powerful Herceptin can be for some. God Bless the people at Genentech that developed this wonderful drug. And I wish the same good fortune to those at GSK who no doubt worked just as hard on Tykerb. I pray that Mom doesn't reach the point where she needs to turn to Tykerb for help. The question put to me by the oncologist now, is whether to resume giving Mom Herceptin. It sure is a break not schlepping up to the hospital every Friday to get her infusion. But will she remain cancer-free without it? If anybody wants to chime in on that one, please do. Like Ross Perot in his presidential debate years ago, "I'm all ears". I think I'll go have an eclair with Mom and ponder that question.


Greatfully yours,
Tom

[eric]

Amazing and great news! Like you and many others, I would love to know what if anything did the trick. Maybe her onc can offer a suggestion. Anyway, I'm thrilled for both you and your mother. You deserve it, you're a special person, as I'm sure she is. ENJOY AND CELEBRATE!!!

[StephN]

Add your particular brand of loving care to your Mom's list of positives. YOU give her a reason to fight and for her body to continue to resist any cancer activity. You know that Herceptin stays in one's system for several months and this hold over effect has also been at work I am sure.

If her med onc will order more Herceptin, I would go for it. Even if it is for say 3 months. Many of us (myself included) are doing well on Herceptin after getting either the initial cancer or mets under control.

I have been praying that your Mom (I feel like she is Mom to all of us here!) is a responder. With the advantage that often in the older patient the cancer is not as aggressive, she probably has this also going for her.

Been waiting for these results and the news is wonderful! The suspicion that the hot spots on the last PET were from bumps or arthritis seems to have panned out. Enjoy those occasional eclairs and consider life good.

[kareneg]

Dear Tom,

I am truely happy for your mom! You are an amazing man and I hope and pray this horrible monster never ever returns. Enjoy several more eclair's with your mom. God bless you both.

[Sherryg683]

Tom, I am SOOO happy for your mom and for you. You are an angel to her and I'm sure all your help and concern has helped her tremendously. It has to be such a relief to have someone that you can turn all the worrying and question asking over to. You are an awesome son. I have also been cramming in the curcumin, grape seed extract, green tea pills and other stuff..so I am hoping that it will indeed help keep the cancer away. Give your mom a hug for me and tell her to enjoy her holidays..sherryg683

[tousled1]

Tom

This is great news! Breast cancer is a deadly beast and I don't think anyone knows the why's or wherefor's of what makes one person have such a terrible struggle while others seem to just breeze through it. Your mother is extremely lucky to have such a loving son. I am sure that prayers have had a lot to do with your mom's results. I personally was delighted to hear the news especially since I too had such severe lymph node involvement. You have given me the encouragement that I needed to hear and at a great time. Now you can stop worrying for a while and relax. Do something nice just for yourself you surely do deserve it.

[Sandy H]

Tom, this is indeed incredible news! I am sure you want to scream for joy and yet you don't dare not knowing what is around the corner. I ask the same question with myself what is doing the trick here. We may never know! It is probably a little of everything. It is a great reward for you as you have worked very hard for your Mom and for her fighting this battle. Even though she has not done chemo, its still been a battle for her. May I asked why no conventional treatment? Was there a reason she couldn't do it, didn't want to which is a choice she has a right to. Herceptin certainly, has been a life saver for many and yet for many it isn't. For me I think it may have slowed my disease and perhaps, even kept it it localized but it did not clean it up. My oncologist is expecting the Tykerb to clean it up!!! If your Mom ever needs the Tykerb don't despair it is an easy drug to tolerate not at all like chemo. Certainly, worth keeping it as an option down the road. Now, that I have been off the Herceptin for two months I realize how much better I feel!!! Have lost nearly 15 pounds and so don't feel like I weigh 500 pounds. My feet and hands were not swellen so didn't see the need for meds to get rid of fluid. It was all at the waist!! Enough said, I am so excited for you and your Mom. Sending you both a big hug and enjoy that eclair!! Sandy

[Bev]

Thrilled to hear all is well. Don't know about more H. I guess results in 07 will tell us more.

I'm waiting on scans done this week. I'm assuming no news is good news, as with the original dx, you had the phone call w/in
24 hrs.

You, like Gina, should pursue a medical career. You are such a positive force. Thanks for good news. BB

[Lolly]

Tom, this is great news, and I'm so happy for you and Mom.

I think there is still so much that's unknown about the characteristics of each individual's cancer, and how life style/diet affect development of that cancer, or lack thereof as in your Mom's case!

You know that old saying "If it ain't broke don't fix it", so what you're doing must be good....Keep Up The Good Work!!!

<3 Lolly

[Kaye]

Tom, so very glad to hear about your mom. Thanks for sharing. If only 'they' researchers knew what worked best for each. The alternatives your mom was using are ones that are being researched for the cancer pathways they presumably block.
What about of curcumin was/is your mom taking and how often? How much green tea does she drink? How about the Inoxitol hexaphosphate (sp?)
It wasn't too long ago that I read something about one of the common forms of childhood leukemia that was 95% fatal 20+ years ago. Those stats are supposedly now reversed--only 5% fatal and 20% 'curable' or able to go into remission (not sure which, although I think I read 'curable').
What allowed this involved the use of already existing treatments that were given in different ways--such that the different pathways were blocked. Perhaps this may be what happened with your mom?
I hope that this positive path continues for your mom. Wishing her all the best!

[Barbara H.]

Hi Tom,
This is such great news, just what we have been waiting to hear. This cancer manifests itself in so many different ways, even in the HER2 domain. My doctor is also surprised how well Herceptin worked for me with advanced disease. It put me into NED, but now I have some in the bones that is responding, but not without the addtition of Navelbine. You are correnct. This disease is exhausting, especially when you want to get on with your life.
Congratualtions, and I hope that your mom continues to receive good news.
Barbara H.

[lexigirl]

Wow Tom!! Praise God and the wonderful med herceptin! Such terrific news! You are such a blessing to your mom. Please let her know we are all so pleased for her!


Hugs and Prayers,
Lexi

[Vanessa]

Congratulations on the good news and I wish your Mom continued sucess in this battle. My doctor believes that Herceptin is the miracle drug that is changing bc statistics. She also advocates using curcermin. Best wishes!

[chrisy]

Wow, Tom -great , great news - and excellent questions.
Maybe we are getting closer to the answers, at least I hope so. I think the combination of Herceptin, which as StephN says, does stay in the system for several months, green tea, Curcumin, Inositol are all contributing to keeping mom's cancer at bay. But I also believe the prayers and the love you wrap around your mom add incredible and unknowable healing energy. The lack of "toxic" chemo also frees your mom's natural immune resources to join the fight unimpaired.

Go ahead and enjoy the doctor being perplexed! Remember earlier this year when the doctor was so certain the PET scan was showing progression? HA! May you and your mom continue to baffle everyone for many years to come!

Much love - enjoy the eclairs. With some green tea.

Chris

[Joy]

So happy for both you. I agree that your diligence and love and research and advocacy and nutrition have made such a difference. And your mom is obviously quite a tough lady! Enjoy this peace.

[jhandley]

Hi TomI am pleased for you and your mum. Is she still taking Q10? and do you do the omega 3 thing?

Jackie

[sarah]

great news! very happy for you and your mom
all the best
sarah

[Becky]

Tom


Obviously all the wonderful care you have given your Mother has helped tremendously. The great diet and supplement regime has clearly helped. Also, I believe that your mom seems (via your posts) more relaxed about everything too. This is a huge boon to the regime.

I am so happy for you. It is always a joy when hard work (especially on behalf of a loved one) pays off so dearly well.

Sincerely

Becky

[Tom]

Dear friends, I just wanted to take a minute to thank you all for your kind words, not to mention your continued support, be it informational or emotional in nature. Again, I can't express my gratitude enough, for all of the kindness, concern, and prayers that Mom and I both have received from all of you here. It's value cannot be overstated.

I also wanted to respond to the questions some of you posted as well.

StephN is probably right about Mom being a responder to Herceptin. Considering the number of nodes involved and the time they had a free ride to grow, the Herceptin surely helped once it was administered. As far as Mom's age making for a less aggressive course of the disease, I don't know if that applies to estrogen negative BC, but I will try to find out.

Kate, as far as doing something nice for myself, I ordered a new hand plane I have been eyeing for some time now. Maybe I will have the peace of mind for a bit in order to finish Mom's grandfather clock in time for Christmas. But as far as gifts go, there could be none better than knowing her BC is at least under control for the time being.

Sandy H, the reason Mom had no conventional chemotherapy was that she was 80 years old when diagnosed, and also because she was told at the time of the original surgery that she had no node involvement, and it was thought that she was HER2-. Even radiation therapy was being discouraged early on, until the pathology report was corrected to reveal the HER2+ status. Then of course in addition, the extensive node involvement was discovered 8 months later.

Kaye, I give my Mom 900 mg of concentrated curcumin extract from Life Extension, 3 times a day. The green tea extract is 725 mg, containing 250 mg of EGCG, and 425 mg of other polyphenols. The inositol hexaphosphate is 800 mg, with 220 mg of inositol as well. That is given twice a day. She also consumes about a quart of decaffeinated green tea each day as well.

[Tom]

Chrisy, I often think about that nightmarish earlier PET scan that 'showed progession' and 'extensive mets' to many areas. That one still gets my shorts in a knot. Had I not been my usual pig-headed self and asked for a CT follow-up at the time to confirm what they said they were seeing, Mom's Herceptin would have been stopped much earlier and for good, and they would have sent her home to die without further treatment.

Jackie, Mom is still taking 100 mg of CoQ-10 3 times a day, and I am giving her 4,200 mg of EPA and 3,000 mg of DHA (both Omega-3) daily, as well as the Omega-3 in the form of 7,000 mg of alpha linolenic acid from her flaxseed oil. The flaxseed oil also provides 2,500 mg of oleic acid, which adds time to the effectiveness period of Herceptin. She also gets gamma linoleic acid, which has been shown to down-regulate HER2 all by itself.

Becky, the one fact you mentioned goes a little further than you might think when it comes to Mom being 'relaxed' about the whole thing. From the very start, I decided that since Mom was already suffering from vascular dementia, I would NOT tell her that she had breast cancer. This was a very controversial decision among some of her doctors, and may even offend the senses of some of you guys. It seemed to me that it was more unfair to give her yet another thing in life to worry about besides her mental decline. I also wonder if the absense of the incredible amount of stress associated with knowing you have a life threatening disease, may have somehow lessened the impact on her imminue system, allowing it to better fight the BC. I will never know.

[Tom]

The closest Mom ever came to realizing she had BC, was after her first surgery when she asked me why her breast was out of shape. She gave that observation about 30 seconds of attention at the time in the recovery room, then moved on to more serious questions, like when were we going to get something for lunch. Her nurses were at first horrified, then laughing themselves silly, when she first awoke and said very slowly, quietly, and deliberately, "I'm going to die........................if I don't get something decent to eat soon". I still laugh about that one.

Since that moment, I have told her nothing except that she has an infection that requires us to go to the doctor's frequently to get it cleared up.

Anyway, thank you all again for your comments. I hope that this upcoming year will bring more and better options for all of us in our treatment. I always have to remind myself that many of you are not or have not been, as lucky as Mom in the success of your particular treatment regimens. I sometimes feel guilty when celebrating good news, as the memory of those who have passed on or are suffering even now from this scourge, tempers my joy. I think about Linda, Sherry in WV, and others all the time, and pray for those less fortunate in their journey. God Bless all of you, and remember that the most potent medicine of all is faith and prayer.


Sincerely,
Tom

[Jean]

Dearest Tom,

Isn't it just wonderful to have hard work and love pay off! What a powerful
combo....May God continue to bless you and Mom.

Warmly,
Jean

[Lolly]

Dear Tom, I just want to comment on your decision to help your Mom's peace of mind by not revealing the extent of her "infection".... Like you I feel day to day peace of mind is so important, and to be happy and content in one's daily life, well, we should all be so lucky.

<3 Lolly

[jag]

I Too Try To Do All I Can To Help My Mother.....i Know How You Feel.....all You Did Was For Your Moms Best .....god Bless You....hope Your Mom Continues To Be Well///

[MCS]

hurray for the great news. Congratulations to you both. Here's the recipe


herceptin
your love and care
faith
hope
luck
the guy above has a purpose for her here

XO

MCS ( maria)

[Shell]

Tom-

I am delighted that you shared you and your mom's good news with us. Good luck in making your decisions.

Regards,
Shell

[Cathy1]

Dear Tom,

I haven't been on the board for a long time, but I remember what a wonderful son you have always been to her. Never underestimate the power of prayer, because it is indeed the hand of Almighty God. He is in complete control of everything! Your mom is so blessed to have such a caring, compassionate and loving son and she must be a truly remarkable mother. God has rewarded you both. God Bless, Cathy