The monster is back

chrismc

laura25 said:

Sleep
I've tried acouple of things, but will call the Dr and have him suggest something alittle stronger. Thank you for checking in on me </p>

Ativan 1mg is working well
Ativan 1mg is working well for me. It calms me down all day and I am able to sleep at night. Hope you find something that works for you.

Chris

soromer

My daughter was 14 last year when my chemo failed
so I have some idea of how you are feeling.

It also sounds as though we have some other similiarities. I was also dx in Jan 2011 with endo adenocarcinoma, grade 2 stage 3C2 (because during surgery it was discovered that the cancer had spread to para-aortic nodes).

I had 6 rounds of chemo, doxorubicin and cisplatin, and was about to undergo radiation when the CT scan I had done showed mets to the lungs. That was a year ago exactly this week.

My gyn/onc gave me the news over the phone. I was at home by then with my husband and daughters (the older one was then 26). We all sobbed.

And then I got to work.

I spoke with one of my very oldest friends, a DO who is now teaching at a med school, who told me, "Time to see the witch doctors." I knew what she meant--time, that is, to start considering non-allopathic treatments.

My gyn/onc, by the way, is based at one of the 40-something Comprehensive Cancer Centers in the U.S., so she's no slouch. But they are conservative here in the Midwest. I did seek a second opinion from a gyn/onc at another CCC nearby. He had very little to offer me other than second-line chemo. The clinical trials they were running weren't ones I qualified for; my lesions were too small, thankfully.

So I stayed with my first gyn/onc and started the hormonal therapy she recommended. I've been on 160 mg of Megace daily since last September (plus 2 baby aspirins daily). She explained that since my tumor cells were strongly estrogen and progesterone positive, the Megace had a good chance of working for a good long while--a decade or more for some of her patients.

But that's not all. I found some women who do Reiki healing, and two circles were very helpful to me. They greatly reduced my fear. I started doing qi gong, which I think has helped my energy balance. I started acupuncture, originally for pedal neuropathy but then later for immune system support. I eventually saw an integrative medicine MD, who also practices anthroposophical medicine. I haven't tried mistletoe yet but might at some point. I have been seeing a DO who does manipulation, and I think that has helped. I've been doing yoga regularly, and I meditate and visualize my body eliminating the cancer. As if it were a big tangle of knotted hair that had to be smoothed out.

My biggest source of support, other than the gyn/onc and the Megace, has been Ayurveda. My Ayurvedist does energy work, but she also prescribes breathing exercises, food, supplements and teas, along with offering a lot of emotional and spiritual support. Since you're in a large metropolitan area you might be able to find a practitioner there too, if that option is at all interesting to you.

I have had great results ever since that terrible scan last September which showed 5 spots in my lungs (the largest 8 mm) and several suspicious lymph nodes. My December scan showed two spots had disappeared and the others were smaller by half; my March scan showed more improvement yet; my June scan showed NO evidence of disease. They are ALL gone.

I'm still maintaining my treatment regimes, though summer has been a little lax for me. But I'm getting back into my regular routines with the approach of Labor Day and the return to school. I love my treatment team and think that they are doing very well by me. I believe it's the synergy of all the methods I'm pursuing that has helped me heal.

I'll be honest. The things I do are expensive, time-consuming, and often inconvenient. But so far, so good, and I can't argue with success.

I will also tell you that my younger daughter in particular has had a very, very hard time. However, she had some background issues that have nothing to do directly with my cancer dx, so it's not surprising that she has struggled this year. All you can do is hold on and work for the best. She is better, more stable and more cheerful since my health has improved.

I am very sorry that you are in this situation. I wish that none of us had to deal with this beast. But all the same--you can get well. Even after a setback like this.

Good luck, Laura. We all will be here for you; we're good that way.

Peace and blessings to you and your family.
soromer/Kate

laura25

soromer said:

My daughter was 14 last year when my chemo failed
so I have some idea of how you are feeling.

It also sounds as though we have some other similiarities. I was also dx in Jan 2011 with endo adenocarcinoma, grade 2 stage 3C2 (because during surgery it was discovered that the cancer had spread to para-aortic nodes).

I had 6 rounds of chemo, doxorubicin and cisplatin, and was about to undergo radiation when the CT scan I had done showed mets to the lungs. That was a year ago exactly this week.

My gyn/onc gave me the news over the phone. I was at home by then with my husband and daughters (the older one was then 26). We all sobbed.

And then I got to work.

I spoke with one of my very oldest friends, a DO who is now teaching at a med school, who told me, "Time to see the witch doctors." I knew what she meant--time, that is, to start considering non-allopathic treatments.

My gyn/onc, by the way, is based at one of the 40-something Comprehensive Cancer Centers in the U.S., so she's no slouch. But they are conservative here in the Midwest. I did seek a second opinion from a gyn/onc at another CCC nearby. He had very little to offer me other than second-line chemo. The clinical trials they were running weren't ones I qualified for; my lesions were too small, thankfully.

So I stayed with my first gyn/onc and started the hormonal therapy she recommended. I've been on 160 mg of Megace daily since last September (plus 2 baby aspirins daily). She explained that since my tumor cells were strongly estrogen and progesterone positive, the Megace had a good chance of working for a good long while--a decade or more for some of her patients.

But that's not all. I found some women who do Reiki healing, and two circles were very helpful to me. They greatly reduced my fear. I started doing qi gong, which I think has helped my energy balance. I started acupuncture, originally for pedal neuropathy but then later for immune system support. I eventually saw an integrative medicine MD, who also practices anthroposophical medicine. I haven't tried mistletoe yet but might at some point. I have been seeing a DO who does manipulation, and I think that has helped. I've been doing yoga regularly, and I meditate and visualize my body eliminating the cancer. As if it were a big tangle of knotted hair that had to be smoothed out.

My biggest source of support, other than the gyn/onc and the Megace, has been Ayurveda. My Ayurvedist does energy work, but she also prescribes breathing exercises, food, supplements and teas, along with offering a lot of emotional and spiritual support. Since you're in a large metropolitan area you might be able to find a practitioner there too, if that option is at all interesting to you.

I have had great results ever since that terrible scan last September which showed 5 spots in my lungs (the largest 8 mm) and several suspicious lymph nodes. My December scan showed two spots had disappeared and the others were smaller by half; my March scan showed more improvement yet; my June scan showed NO evidence of disease. They are ALL gone.

I'm still maintaining my treatment regimes, though summer has been a little lax for me. But I'm getting back into my regular routines with the approach of Labor Day and the return to school. I love my treatment team and think that they are doing very well by me. I believe it's the synergy of all the methods I'm pursuing that has helped me heal.

I'll be honest. The things I do are expensive, time-consuming, and often inconvenient. But so far, so good, and I can't argue with success.

I will also tell you that my younger daughter in particular has had a very, very hard time. However, she had some background issues that have nothing to do directly with my cancer dx, so it's not surprising that she has struggled this year. All you can do is hold on and work for the best. She is better, more stable and more cheerful since my health has improved.

I am very sorry that you are in this situation. I wish that none of us had to deal with this beast. But all the same--you can get well. Even after a setback like this.

Good luck, Laura. We all will be here for you; we're good that way.

Peace and blessings to you and your family.
soromer/Kate

Kate
Oh Kate your kind words and support mean the world to me. Thank you for telling me your story and letting me know I am not alone. I'm feeling more like myself again and helping Sarah prepare for school next week. We bought school supplies and are going to the mall tomorrow for some clothes. Its so nice to enjoy these moments with her. Its good to hear that your daughter is well, as mothers thats all we care about.. if something happens to us, what about our kids.
I will look into finding a D.O. next week. There is actually a meditation center near me and thought it might help me deal with the stress. Its horrible anyone has to deal with this, but its also good to hear that people are living their lives for years while fighting cancer.
Sending you much Love,
Laura

soromer

laura25 said:

Kate
Oh Kate your kind words and support mean the world to me. Thank you for telling me your story and letting me know I am not alone. I'm feeling more like myself again and helping Sarah prepare for school next week. We bought school supplies and are going to the mall tomorrow for some clothes. Its so nice to enjoy these moments with her. Its good to hear that your daughter is well, as mothers thats all we care about.. if something happens to us, what about our kids.
I will look into finding a D.O. next week. There is actually a meditation center near me and thought it might help me deal with the stress. Its horrible anyone has to deal with this, but its also good to hear that people are living their lives for years while fighting cancer.
Sending you much Love,
Laura

You can do it, Laura
I'm glad you stopped by the thread again and saw my message.

The single biggest piece of information I--and the other women here--can pass on to you is that you CAN keep going with this. Yes, there are some women who have died relatively quickly after diagnosis (usually because they have a worse pathology than we do), but there are also many who have been able to move from one treatment to another, even with a really bad prognosis from their doctors.

I hesitate to say anything that even whispers a "blame the victim" sort of attitude, because there is also a great deal of chance/luck involved. (Leaving aside the issue of the resources you can access & afford--because it has made a huge difference to me to be in a location that has many to offer. My non-medical practitioners have also been willing to offer me reduced rates for their services, which has also been very important as our family's finances have been strained to the limit by my illness.) But I think the testimonies here also show that being proactive on your own behalf increases your odds of long-term survival. Ask questions of your doctors; investigate complementary treatments to see what makes sense for you; take charge of your recovery. That's a common thread you'll see here.

Meditation is great, I highly recommend it. And if there's a Wellness Community/Gilda's Club/Cancer Support Community near you, I recommend that too. The one near me (a CSC) has many FREE supportive programs, ranging from meditation to yoga to support groups to cooking classes.

I do recommend the real-life support group too. I've been going weekly (more or less) for over a year. We really do help each other stay strong and forward-looking. There is one woman in my group who has very advanced Stage IV breast cancer, and she was so ill that her medical providers started to suggest hospice to her. That was mainly because she simply couldn't keep food down. But she kept coming to the group and hearing encouragement, and she kept asking her doctors if there wasn't something else they could try--and finally, she got a medication from a NP that has done the trick and has allowed her to start eating again. She looks better already, even only a week into it.

Her story is an extreme one, because neither you nor I are that sick. But my point is that if someone on the brink of a final decline can rally and gain more time, then we who are in better condition can do so as well.

My daughter and I were out school shopping ourselves yesterday. It is fun just going out to do normal things. I'm not quite taking them for granted again, but I am also able to enjoy them a little more without thinking gloom and doom while I'm doing them.

Keep your spirits up, my dear sister, as much as you can. Cry when you need to also. It's all part of the process. Mostly, keep reminding yourself that you ARE resourceful and that your body CAN heal with the right support for you.

Hugs and love back to you,
Kate

daisy366

soromer said:

You can do it, Laura
I'm glad you stopped by the thread again and saw my message.

The single biggest piece of information I--and the other women here--can pass on to you is that you CAN keep going with this. Yes, there are some women who have died relatively quickly after diagnosis (usually because they have a worse pathology than we do), but there are also many who have been able to move from one treatment to another, even with a really bad prognosis from their doctors.

I hesitate to say anything that even whispers a "blame the victim" sort of attitude, because there is also a great deal of chance/luck involved. (Leaving aside the issue of the resources you can access & afford--because it has made a huge difference to me to be in a location that has many to offer. My non-medical practitioners have also been willing to offer me reduced rates for their services, which has also been very important as our family's finances have been strained to the limit by my illness.) But I think the testimonies here also show that being proactive on your own behalf increases your odds of long-term survival. Ask questions of your doctors; investigate complementary treatments to see what makes sense for you; take charge of your recovery. That's a common thread you'll see here.

Meditation is great, I highly recommend it. And if there's a Wellness Community/Gilda's Club/Cancer Support Community near you, I recommend that too. The one near me (a CSC) has many FREE supportive programs, ranging from meditation to yoga to support groups to cooking classes.

I do recommend the real-life support group too. I've been going weekly (more or less) for over a year. We really do help each other stay strong and forward-looking. There is one woman in my group who has very advanced Stage IV breast cancer, and she was so ill that her medical providers started to suggest hospice to her. That was mainly because she simply couldn't keep food down. But she kept coming to the group and hearing encouragement, and she kept asking her doctors if there wasn't something else they could try--and finally, she got a medication from a NP that has done the trick and has allowed her to start eating again. She looks better already, even only a week into it.

Her story is an extreme one, because neither you nor I are that sick. But my point is that if someone on the brink of a final decline can rally and gain more time, then we who are in better condition can do so as well.

My daughter and I were out school shopping ourselves yesterday. It is fun just going out to do normal things. I'm not quite taking them for granted again, but I am also able to enjoy them a little more without thinking gloom and doom while I'm doing them.

Keep your spirits up, my dear sister, as much as you can. Cry when you need to also. It's all part of the process. Mostly, keep reminding yourself that you ARE resourceful and that your body CAN heal with the right support for you.

Hugs and love back to you,
Kate

Kate you are an inspiration
Thank you for sharing your story again here. I think you are awesome - positive attitude, a can-do spirit, and determination. I agree that you have found a wonderful synergy. I'm still working on finding that - but life is a process, isn't it. I'm such a work in progress.

You've given me more hope and determination. Thank you.

Mary Ann

soromer

daisy366 said:

Kate you are an inspiration
Thank you for sharing your story again here. I think you are awesome - positive attitude, a can-do spirit, and determination. I agree that you have found a wonderful synergy. I'm still working on finding that - but life is a process, isn't it. I'm such a work in progress.

You've given me more hope and determination. Thank you.

Mary Ann

Thank you, Mary Ann
I appreciate your kind words.

I've received a great deal myself from the women on this board--including you!--who keep doing the very best we know how to deal with something we never wanted and wish we could make disappear with the snap of our fingers. If what I say is helpful too, then it's in part because I'm just carrying on the tradition that's been established here and was in place before I arrived.

I know you have a tough row to hoe, my dear, and I know you are "a work in progress" like the rest of us~! I so dearly wish that you can find the healing combo that works for you.

Hugs and prayers to you.

Kate

seaturtle

soromer said:

Thank you, Mary Ann
I appreciate your kind words.

I've received a great deal myself from the women on this board--including you!--who keep doing the very best we know how to deal with something we never wanted and wish we could make disappear with the snap of our fingers. If what I say is helpful too, then it's in part because I'm just carrying on the tradition that's been established here and was in place before I arrived.

I know you have a tough row to hoe, my dear, and I know you are "a work in progress" like the rest of us~! I so dearly wish that you can find the healing combo that works for you.

Hugs and prayers to you.

Kate

Hello
I just joined and was very recently diagnosed, but I wanted to add my support to you. It has to be so difficult with a young one to think about. But I think your strong love for her will add to the strength of your recovery.

I shall be thinking of you and everyone here.

Naturo

Endometrial Stromal Sarcoma
Hello Laura,
My heart goes out to you all. I went through this with my wife who has passed away.
Standard treatment does not seem to work.
The good news at the moment is that your lungs only have a spot - so action is required.

My non-medical opinion is to try whole body hyperthermia treatment combined with low dose chemo. There maybe a clinic in your state.

Coley's Toxins may also be tried.

Kindest Regards to you all ......

pakb56

nempark said:

Laura
I remembered when I was going for my one year check up I was so devastated my grandson said to me "grandma if its back you will take care of it just like you did one year ago".
That was so comforting to me. Laura, you are on the right track, you are going for a second opinion. The initial shock is always devastating. The Doctors always make it seem worse than it really is. Go for your second opinion and then they will set up a treatment plan for you. It is so normal to start thinking negative and thinking far ahead, but we do this all the time. Hang in there until you get there. Thank God you have a husband, and from what I gather, he is quite caring. That is a plus for you and your daughter. We will all be here praying and thinking about you.

thodr heartless monsters being bak.
Laura so sorry that is the worse thing. You rhink you are going in the right direction and that get pounded with more bad news. I czn imzgine hearing that from your grandson. MIne is 6 and it breaks my heart to think I may not be around to see him grow up.
As others have said one day at a time and try to do as many of your normal activities. That is the advice I rec'd from my 87 year old mother in law, she was first diagnosed swith breast cancer 53 years ago then had her second removed about 25 years ago. She tells me do what I can and do't sit around and feel sorry for myself...stary busy and you will feel better. I try to live by that.
Take care,
Hugs,
Pag