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USPC - Recurrance - Time for Change - Confused

bonniep's picture
bonniep
Posts: 36
Joined: Jun 2010

I have been on the discussion boards and have posted on several occasions so many of you may already know what’s going on with me. I was diagnosed in January with a recurrence of USPC in the supraclavicular lymph node & developed several spots on my lungs. The mass was 3.5 cm x 4 cm and was visible just by looking at my left neck. It looked like my jugular vein was sticking out. It was determined I could not have surgery because of how the mass was intertwined with the key network of veins that affect so many of the bodily functions, breathing, speaking, swallowing, arm movement, etc.. The original course of treatment was to be 1 – 3 rounds of taxol/carbo following by targeted radiation. I had responded well with it the first time around in 2010.
This Monday, I had round 3 of the taxol/carbol, but before the chemo, my ONC/GYN expressed great joy at how much the mass had decreased in size. He could still feel it, but it was significantly smaller and it was no longer visible to the eye. My CA 125 had also fallen from 79 to 35. He decided, because I had responded so well with taxol/carbo without any adverse allergic reactions, he wants to continue with 1 – 3 more rounds of chemo. I agreed to it, but I must say, this really scares me. I don’t have anything to base my fear on except what I’ve read in the discussion boards of this website. From the many posts I’ve read, this combination of drugs is great, but not for long term because of its dangerous side effects to other parts of the body, etc. What are your thoughts on this? I trust my ONC/GYN but he’s just one doctor & I’m sure he’s never experienced dealing with every form of USPC or knows every protocol or treatment available. He’s connected with all the ONC/GYN at MD Anderson here in Houston so there is a bit of a comfort level trusting him. What concerns me is that he doesn’t mention the majority of the information discussed on this discussion board. What do I bring to his attention? What is relevant to my USPC cancer journey?
I felt so bad this morning, I thought I would try to read a lot of the posts again just to get some ideas of what to do to try and feel better physically and know I’m contributing to fighting this dreadful disease. The only nutrition advice I got from my ONC/GYN and a book he gave me (from the American Cancer Society) is eat whatever I want. I have to eat and if I can get it down and keep it down, that is the goal. I got so confused because so many of you make suggestions – many of which, I’ve never even heard of the ingredients; plant based diet or 80%/20% plant/meat diet or tofu/good or tofu/not good or soy/yes or soy/no or vitamins/yes or vitamins/no or hormones matter or hormones don’t matter or chemo or radiation, etc. Each contribution to the discussion board is supported by personal experience, research, studies, etc, but which one is the ‘right’ one? If I want to make life changes that I know can only help me or I want to discuss treatment options with my doctor how do I narrow in on the relevant one for me? I don’t want to be like my Dad who died from cancer – every week he was on a new diet, or a new supplement and nothing changed, ever. He was miserable because he was constantly reading and researching and looking for that miracle that just never happened.
I want to be sensible and for me the 80%/20% plant/meat would be a huge improvement over what I eat. We are a meat & potato family. I need to add exercise because I really feel weak and have no stamina. How I start that feeling the way I do will be the million $$$ question.
I am going to talk to my doctor about hormones. I pulled out my biopsy of the mass and it showed it is USPC but it also showed “scattered strong positivity for progesterone reactor”, and “scattered weak positivity for estrogen reactor”. Compared to my original biopsy after my hysterectomy in 2010, it said “negativity for the progesterone reactor”, but “positivity for estrogen reactor”. Basically, I now show positivity for both progesterone and estrogen. My doctor did not discuss this with me - his primary concern was that the original cancer was USPC so he would know how to treat it. How it could affect my overall treatment plan, I have no clue, but at least I can have an intelligent conversation with him about it. Until I read about progesterone and estrogen on the discussion board, I never even knew about it. Your thoughts at how to get started on a healthier diet & lifestyle. I’m 63 – may be hard to teach an old dog new tricks!

Kaleena's picture
Kaleena
Posts: 1109
Joined: Nov 2009

Hi Bonnie:

Sorry you have to go through this again. However, it is great to hear that the chemo is working for you. Although your CA125 wasn't high at 79 to begin with, it is great that it has dropped. Was your CA125 an indicator before?

I know what you mean about how confusing it is on what to eat. After I was diagnosed (in 2005) and did my treatment, I gained over 30 pounds and I kept asking the doctor what to do and was told "american's eat to much". Not a good response. However, I tried to eat well, but was still eating some of my old ways. Although I did lose a few pounds here and there, it wasn't much. It wasn't until after reading a lot of the posts here that I actually changed my diet.

I used to drink a lot of diet colas, used sacchrine or other artificial sweeteners, fried foods, sweets, etc. Now I do not drink diet colas (maybe once a few months), and I use honey in my tea or small amount of natural sugars. (I know you shouldn't use sugar, but occasionally). Also, my family has gone back to the olden days when you only had "special" foods (like cakes, cookies, etc.) on holidays only. (instead of having a daily "snack" drawer. Since August of 2011 when I made the change, I have finally lost over 28 pounds and feel great. We try to eat or make all of our meals at home and try not to use process foods. We did this as a family thing and not only do we have more sit down dinners together, my sons want to be healthy too and they look and feel great. My husband (who has always battled weight all his life, just lost 87 pounds).

But most importantly you have to stay positive. If you are going to be stressed over everything you put in your mouth, then it will work against you. Yes, change your diet, but don't forget to have fun and enjoy all the things that make you happy.

For me, personally, I was told to stay away from hormones or anytype of hormone therapy. With regard to your questions, take a list with you to the doctor or if your doctor's office has a PA that works with him/her, see if you can email her some questions.

Hugs to you!

Kathy

Double Whammy's picture
Double Whammy
Posts: 2292
Joined: Jun 2010

Hi Bonnie-
Have you read the Anti Cancer book by Dr. Servan-Schribner? I think it's excellent. For me, this just made so much sense and reinforces everything we're told about a healthy diet and bad things like preservatives, environmental stuff, processed foods, etc. I loved his term "managing your terrain". (He did eventally die from brain cancer, but may have had that 17-year period of NED because of his lifestyle).

I didn't have UPSC and I don't have a recurrence. I did, however, have both breast and endometrial cancers at the same time, so in my little mind I do wonder what sort of environment I provided for them to take root and grow. I do know that both cancers were ER+ and I know the factors that contributed to me continuing to produce estrogen in spite of being postmenopausal (i.e., too much belly fat). The rest???

I'm 64 and I'm not ready to succumb to any of the lifestyle related diseases if there's something I can do to help avoid them without making myself crazy or miserable in the process. Cancer was quite a wake-up call. I know (for me) the changes I've made are enough that should I have a recurrence, I will not say "if only I'd had more turmeric".

There's just too much controversy and debate for me to make any more changes than I have - and I have made a lot.

"They" now say alcohol is bad in any amount for breast cancer. "They" also say that red wine is good for heart disease. I have hypertension and a very strong family history of heart disease. Most men in my family have died by age 65 of heart disease. There are strokes amongst some of the women. The thing that makes me different from the men and may have protected me to this point is the amount of estrogen. I'm now on an aromatase inhibitor. Bye, bye any remaining estrogen. Do I have wine or not? So which health concern do I address and which one do I ignore? Either one could kill me.

I hope you educate yourself as much as you can and make an informed decision of what you're going to do (or not) and are comfortable with it. You might ask for a referral to a nutritionist or alternative medicine specialist to help with this. It is most important during chemotherapy that you don't deprive your body of nutrients so it can recover from the unslaught of chemo and be strong enough to fight.

Whatever you do, don't beat yourself up over what you're doing or not doing and definitely not about any past behaviors. I believe getting older puts us most at the most risk for getting cancer and we sure all want to get older!

Continue to do well,
Suzanne

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

As far as your recurrence, it sounds exactly like mine. Did we discuss this on another thread? My treatment was 1.5 years ago and it included surgery/biopsy like yours confirming UPSC and taking out lymph node that was involved, I then had 7 weeks of carboplatin (weekly) and tomo radiation (MOnday-Fri). It worked and I'm still NED in that area.

As far as your extra 3 rounds of chemo. I would want that myself. I am dealing with recurrence in abdominal and pelvic nodes and I did ask my doc for extra dose of treatment because it seems that there is a pattern of residual/suspicious areas to "watch" and then the next scan shows this is problem area/mets. I think UPSC is especially resistant.

I just have one doctor also so I know what you mean. This time doctor ordered a molecular profile of my tissue (which it sounds like you must of had since you talked about hormone sensitivity). I was amazed that mine is now hormone sensitive and it used to be insensitive. This is the route we are taking now for treatment instead of starting with chemo/radiation. I would definitely ask your doctor about using hormone treatment once you finish the chemo. I'm taking letrozole (Femara) but there are other types of hormone treatment. This may help keep UPSC from spreading more in future.

Re: new lifestyle. I decided to go plant-based because of what I've learned about animal products - this is controversial subject. It can be hard to prepare from scratch and use fresh but I try to stay in the moment and not think long term which could get depressing. Fruits are my sweet treats. There are many threads for you to read on diet and good food to fight cancer. Go back an look at some recent ones right now.

I exercise about 6 days a week with a friend. If you can find a buddy that will help you stay motivated. Start small and build. Cancer treatment is very exhausting for the body. I also have lower stamina. I'm just a year older than you. I would just encourage you to start small and build up your length of exercise. If you don't want to go all plant-based, maybe do it 1-2 days a week and see how if works for you. One thing with animal products is that it feeds those hormone positive cancer cells which we don't want to do.

Don't get discouraged. Keep in the now and go day by day. I hope this helps. I'm glad your treatment is showing reduction in tumor and lower Ca125. All good signs. A book I recommend is Getting Well Again by O. Carl Simonton.

All the best, Bonnie. Mary Ann

sunflash's picture
sunflash
Posts: 153
Joined: Aug 2011

Hi Bonnie,

I'm sorry to hear you're dealing with a recurrence. I know what you mean about how difficult it is to make lifestyle changes when there are so many choices out there, and so much conflicting information.
I've always been a healthy eater and also exercised regularly, going to the gym several days a week. I got UPSC anyway. My doctor doesn't think this cancer is influenced by diet, but encourages me to do the things I've always done prior to getting cancer. That's what I've decided to do, because eating healthy and exercising has always made me FEEL better, given me more energy, and helped my mental attitude. That's really important and critical for me, as I'm a teacher and need to be mentally and physically prepared to be able to endure the rigors of facilitating a classroom of students every day!
By the way, I also live in Houston. I don't go to MD Anderson, but my doctor used to work there and left to form her own practice. My 2nd opinion was at MD Anderson, and the doctors there told me she was held in very high regard there. I agree it's important to be able to trust the advice you get from your doctor.
I finished with my 6 cycles of Taxol/Carboplatin in November. I suffer no long term side effects, including neuropathy, from the treatment. If I were you, I'd continue with the chemo as long as you can tolerate it, especially since you're having success with it.
Best wishes on your treatment decisions!
Diane

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Just going thru any cancer treatments is a feat in its self, so be proud of your accomplishment. Then add on starting a new healthier lifestyle and which direction to go. When I first completed treatments in '09 I started to ask others on direction to go to keep my immune system up and fighting full tilt. One area as someone else mentioned, follow the ANTI-CANCER book.....it's loaded with wonderful insight from a doc who fought aggressive brain cancer for some 15+ years.

I basically follow a plant-based diet, avoiding any meats (more my choice as know grass fed is out there). Now when we continue to read on a proper direction you've got the Anti-inflammatory diet, Paleo diet, etc, etc...eat this and try this, etc, etc. It's so, so confusing and by the time one thinks they've got it down, someone else suggests this or that due to latest research.

My suggestion for myself was follow what I felt would be best for me, and that is still the plant-based diet and avoid foods with hormones and do my 40 minutes of exercise, do my daily mind-altering and stress reducing practices daily, and in the end, simply learn to enjoy my life.

One thing my therapist who's an ovarian cancer survivor of 12 years told me, do try to follow a good path in regards to ones health, but don't go overboard and miss out on some of the simple pleasures in life. For example, don't be so rigid about what we eat....on occasion go out and enjoy a pizza with friends or a piece of cake that you always loved.

I've learned so much for all the women on this site, so ask away, you'll find your niche....

Hugs,
Jan

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

I can't say one way or another whether the additional chemo will have long term effects for you but I think its unusual that they would only recommend 1 to 3 rounds since standard protocol would be six. Could it be that they only recommended 1 to 3 rounds initially because they wanted to see how the cancer responded, but the mindset was to continue with the standard six rounds if you had a favorable response?

As far as supplements, herbal remedies and dietary changes, that is a personal decision but it is not one you should worry about making as you are still getting chemo. Some changes can adversely effect chemo and do more harm then good. For my part, I am still getting chemo so the only real difference I've made is to drink more water and less alcohol. ;o)

If eating a little more healthy and getting more exercise would be a huge improvement for you, why not just start with that. You can even do that while you are still getting chemo. Just remember to have a protein source to keep your counts up.

Take care,
Cindy

I Will Survive
Posts: 27
Joined: Aug 2011

Reading all of the conflicting information in this forum CAN be very confusing. You could spend all day, every day, planning and plotting your foods and supplements etc. I think you need to do what you are comfortable doing without devoting your entire life to this.

While there is some good information here, there is also a lot of "stuff" that is just posted with no real proof of its usefulness or even of its reliability. There is an awful lot of garbage and false information online, as you probably already know.

I decided I did not want to be "Cancer Girl". I do not want cancer to define me. I want to enjoy whatever time I have left ----and hope it is a long time. But if it isn't, I will have enjoyed my time and not spent 24/7 thinking about every bite I put in my mouth or every step I take.

Hannah

california_artist
Posts: 850
Joined: Jan 2009

never mind, I put the post on the Taxol info thread.

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

I have to admit that I was terrified of chemo and tried everything I could to stop my ovarian cancer without using chemo. It was a papillary serous cancer which apparently is very aggressive. I had to be hospitalized & sedated just to get thru the first chemo. I have come to realize that I am a lot stronger than chemo and it is possible to "clean up" my body AFTER chemo to avoid the cumulative damage of the platinum drug I took.

Carboplatin is the "gentlest" of the three platinum drugs available (just my opinion). One is considered as "heavily treated" after six treatments of carbo (this distinction is for clinical trials & other therapies that affect bone marrow). The cumulative damage from carbo affects the bone marrow. Your doctor is watching your blood count & platelets and if he thinks you can handle more, you will probably benefit from more--take it one step at a time.

You are lucky to have not had an allergic reaction to carbo. If you stop now, there is the chance that the microscopic cells will lie quiet for a few months then start mutating & growing again. I think it is important to take advantage of this opportunity while the cancer is sensitive to the first-line therapy.

I think it is really important to deal with your fear of chemo--whatever that takes. Tell yourself that you are stronger that chemo. I tell everyone that I am A BEAST-stronger than chemo & stronger than cancer. If you feel wiped out, that will pass & your strength will return.

Once you figure out the diet that is right for you, enjoy it. From what I have observed, there are plenty of people in remission who never changed their diet; however, you will probably feel better in general if you eat a diet closer to how cave people ate--they were hunter gatherers. Diet is one thing you have control over--it sounds like diet was your dad's coping mechanism while he was dealing with cancer--you really don't know if his efforts extended his life or not because he was an uncontrolled experiment. I'm sorry you lost your dad. What do you think he would say to you if he could be in touch?

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