To chemo or not to chemo-that is the question.

Anonymous · July 2016

First let me say, I'm fairly new to the stage 4 area but not new to BCO. Some may know me from my many posts over the years. While I am new to a stage 4 diagnosis, I'm not new to disease. I've lived with RA since being diagnosed at the age of 18 and in 2003, I suffered from a life altering disease (flesh eating bacteria) which almost took my life. Before BC treatment, I had three debridement surgeries, a colostomy, flap reconstructive surgery to close a wound, and a colostomy reversal. From that experience, I've developed a hernia the size of California (exaggerating) and a fistula that developed while recovering from one of those many surgeries. That fistula filled with fluid while doing chemo for BC which put me at risk for more infection. The reason I only did four rounds of chemo, instead of six.

Today triggered so many emotions because I just learned of another woman that lost her battle with triple negative breast cancer. One of the most "positive" women I've seen dealing with this disease. Many described her as "brave" and a "fighter". She had two beautiful, young girls, a wonderful, supportive husband and a mom that would have done anything for her. She started her cancer nightmare four years ago (two of those years were metastatic). She was treated by the best of the best. She did immunotherapy, many trials and all the latest and greatest that was offered to her. Yet, she still didn't make it even though she was "brave" , "positive" and a "fighter" (said with a bit of sarcasm).

As many of you know, we recently lost one of our own BCO family members, Blondie. That woman never ceased to amaze me with her amazing stamina in the face of disease. Our Blondie stopped all conventional treatment two years ago this month and I'm sure she broke many hospice records. Her mets diagnosis came in 2009. I guess we will never know if she would have lived those extra two years if she decided to continue with treatment. I guess that's one of the reason's I'm perplexed. No one answer fits all.

I have my own treatment decisions looming. Gemzar/Carbo combo is the plan. I was diagnosed with TN mets to the lung this year. I had a wedge lung resection. After surgery, my pet scan showed more nodules. My MO wanted me to start this combo ASAP. What did I do? I RAN. I went on a cross country vacation to see some wonderful BCO friends (Blondie included). I visited as many as possible with the time constraints I was facing. I thought I'd deal with the rest once I returned. Blondie said I was in denial. Just like her to point out the obvious. I loved her bluntness and honesty.

Once back, again I was facing a decision of chemo or no chemo. By this time, I knew my new MO was getting impatient with me. We agreed to have a CT scan with contrast when I returned. It showed more nodules in both of my lungs. I also agreed to have a port placement, something I didn't do the first time around. Then what did I do? I RAN AGAIN - on to another road trip to see more BCO friends (great trip btw). My excuse? I'm waiting for my port to heal. It is a good argument considering my past infection history.

I'm back, and once again my one treatment option (chemo) is looming. I'm supposed to start on Wednesday. Every instinct is screaming at me to RUN AGAIN. I did TCH x 4, 30 rounds of radiation and a year of Herceptin when originally diagnosed and it still came back - or maybe never left.

How do you all make these difficult decisions? My QOL is already compromised between having RA, the effects of Flesh Eating Bacteria and the BC treatment I've already done.

Is there anyone out there with TN stage 4 cancer that opted out of conventional treatment and achieved long term survival? Is there anyone out there with TN stage 4 cancer that did chemo and achieved long term survival?

I know non- conventional treatment has been a sore subject on these boards, most are pro conventional treatment, and I do understand the reasoning behind that mindset. However, after throwing everything at my original diagnosis, I'm starting to question my own choices. Some say that chemo can gives us more time with our loved ones, but at what expense to QOL? I recently read an article from 2012 from Medical News Today that said chemo can inadvertently encourage cancer growth. How do you sort out all of this information - positive and negative? I'm not seeing any good choice.

My lung nodules seem to be multiplying quickly. You'd think I'd be able to make a decision by now. I'm really struggling here about quality vs. quantity and what that means for me and my family, who are mostly pro chemo and look at anything other than chemo as "giving up". I'm hardly a person that "gives up".

I know I've asked many questions. I know no one can tell me what's best for me, but I'd love to know from anyone that wants to share, how you made your treatment decisions and if given the chance, would you have made different choices? Would you walk down the same path?

I'm feeling overwhelmed, confused, tired and pressured to make a decision. Thanks for reading. I value any input you may have.

DivineMrsM · July 2016

First of all, do not regret or second guess your past choices in how you've dealt with breast cancer and treatment. Please let yourself off the hook with the woulda coulda shouldas. In fact, please allow,yourself to feel good about your decisions. You have come a long way and dealt with quite a lot over the years. As you even say, you are hardly the type of person who gives up.

I can understand your wanting to run from making more decisions. I think part of this is because you've had to make so many for so long, and you are weary from the enormity of all of them. At some point, tho, we must face the choices and do something to move forward. It may just be baby steps. And we are forced, once again, to reach deep down inside of us to find something to help us cope, and if we do not find it, we are left with the task of creating something or going about finding something to help us cope.

I do not know much about TN. Is it possible to start chemo and see how it affects you? You would have the option to stop if you did not think it was worth it.You may find it is the right thing for now, or you may find that it is not worth it. i cannot say what the right answer is.

I have a suggestion, tho. If you do not already have your story written down in a notebook about all the health issues you've dealt with since age 18, please take some time now to do so. You may be surrounded by loving people who only want the best for you, but even these people tend to forget one person's details of all they have overcome through the years. It can be helpful writing (or typing on a computer or tablet) your thoughts on what you've been through and I find it helps me put things into perspective more than just keeping it all in my head

Please, if you feel necessary, remind your loved ones all you've been through. Remind them that you have always looked for finding the best quality of life in making medical decisions. I wish you the very best in sorting this out.

blainejennifer · July 2016

Dearest SDB,

No wonder you don't want chemo. Look at all you have been through. Surgeries, recoveries, pain. For you, chemo must mean more of the same.

Here's the deal: Chemo can be like a tasting menu. Try it. Stop anytime it's not working for you. Luckily, for stage 4, they don't carpet bomb you with chemicals, so it's not as kick ass as early stage chemo.

I've had three chemos now, Taxol, Xeloda, and Halaven. I may be ER+, but my disease likes to play like it's TN. The first two I was on for about a year each, and they were awesome years. I traveled, gardened, played with friends. When I was down, it was gentle illness. I could still enjoy reading and movies. Still knitted. When the side effects faded, I went out to play again.

Here's the deal; CAM can help with treatment, but it can't replace it. The only spontaneous remissions I am aware of occurred after the patient experienced another disease challenge with high fevers. Either the fevers killed the cancer, or something about the disease process woke up the immune system and put the patient into remission. All in all, there are about four documented cases. Me, I don't like those numbers.

I did have a TN friend who decided to treat her disease with the Gerson method (I hang with a LOT of former hippies). Her entire breast ulcerated (she might have been doing black salve too). It must have gone to her brain, because she developed severe dementia. At that point, her husband tried to get her into treatment, but it was too late.

If your lung nodules are racing ahead, why not give chemo a try? I promise you, it will be more enjoyable than low oxygen sats and "air hunger". You are captain of your ship, and can stop at anytime. But, stop with a plan. Talk to hospice. Tell your friends. I've seen how hard it can go when a patient waits too long.

Hugs.

Meow13 · July 2016

I don't mean to bust in on stage 4, but there are some ladies that thought Gemzar was an easier chemo good QOL.

Bestbird · July 2016

I am sorry for all you have been through. Certainly it's understandable that you are doing some deep thinking about your potential direction.

Perhaps another potentially more gentle option might be to try an immunotherapy clinical trial, or even to consider hormonal therapy despite being TNBC (see below).

Best wishes, whatever you decide!

According to 2014 National Comprehensive Cancer Network (NCCN) Guidelines, "Patients may be candidates for hormonal therapy irrespective of their hormone receptivity status, provided that their cancer is in the bones, soft tissue (muscle, fat or nerves), or internal organs and is not causing symptoms.The reason for suggesting hormonal therapy is because sometimes the metastasis is indeed hormone receptor positive and the actual test results are incorrect.Therefore, hormone receptor negative patients and their doctors should consider hormonal therapy especially if the patient had a long disease free period after initial treatment, if their cancer is confined to one or few sites, and their cancer is not causing symptoms." (This represents a major shift in thinking regarding potential therapies for TNBC and hormone receptor negative patients).

From:http://www.nccn.org/patients/guidelines/stage_iv_breast/index.html#33/z

pajim · July 2016

SlowDeepBreaths, making decisions like this is hard. As you know. We somehow keep looking for the "right" answer. But there is no "right" answer. It's a cliche, but there is only the correct answer for you.

Each of us are looking for different things out of our lives, and are willing to tolerate different things (side-effects!) to achieve them. You've tolerated a lot up until now, and are staring into the abyss once again. I've started to think about what I want, but have come to no conclusions. I'm just not as introspective as many women.

None of this is an answer for you. Just a lot of sympathy.

I second and third what others say. Just because you agree to have one cycle of Gemzar/Carbo doesn't mean you've agreed to have two. Or three. You don't [yet] know how it will affect you. You can stop at any time. Or ask for a milder treatment, even if it may not work quite as well.

Longtermsurvivor · July 2016

Very long - it just happens!

HI SlowDeepBreaths,

I can't address your two main concerns (TNBC and chemotherapy), because those haven't been my path.

Yet, I want to write a bit about medical PTSD (post traumatic stress disorder). Because I live with a lifelong rare genetic condition and 25+ years with breast cancer, I prefer to call it MTSD (mid traumatic stress disorder).

With MTSD we're faced with getting back on the horse that bucked us, kicked us and stomped us when we were down.

How and why would any sane person want to keep getting back on that medical treatment horse?

"Insanity: doing the same thing over and over again and expecting different results."

Our bodies are often quite dinged up and susceptible to unwanted effects and our psyches often deeply damaged.

I've wrestled with this for many years - personally and with others who share my genetic condition (which is so rare there are few standards of medical care - so we often live from emergency to emergency).

The most important thing I've found is to be kind and forgiving with myself first.

Getting kind and forgiving and welcoming with medical treatment horses might come later, but until I've regained self-confidence and self-acceptance, there is no going forward.

SDB, when I read of you going to visit BCO friends, I don't see it as running away, but broadening your base of knowledge and support. You've accepted the diagnosis, but not the prescribed treatment plan.

And that's okay.

There are very few shoulds in this life-and-death MBC adventure. I would like to propose - because of your unique medical history and experiences, you need special TLC - not only from medical carers, but also from yourself in deciding your treatment choices.

Here's a personal example - as the cancer I've lived with has progressed, I've chosen LESS aggressive treatment approaches, not MORE aggressive treatment approaches. No chemotherapy, no clinical trials, no Hail Mary Passes.

I've already done a lot for science and medicine and don't feel the need to sacrifice this last part of my life to medical interventions that don't make sense and do frighten some aspects of me. Yes, I've done a whole lot to overcome medical MTSD and largely have, but I still know my limits. Enough is enough.

I've chosen hospice because I want less, not more. I hope for quality over quantity of life. I wish to be part of a larger healing and am willing to forgo the push for cure in favor of good care – self-care and hospice medical-care.

Yes, it's unusual, but SDB - each of us are unique and we bring our complex life and medical histories into our treatment choices. Not choosing is a valid choice.

I don't see knowing and honoring your own limits as giving up, but acceptance – one of the highest virtues for happy and wise living.

with loving kindness, forgiveness and tenderness, Stephanie

Holeinone · July 2016

Slow,

We were dx the first time, the same month, year, & now stage 4 the same time. Well I was a month ahead of you.....

I was told by several Drs. & nurses that my prognoisis was scary. Mainly because my 6 nodes had extranodal extension. My mind set from the beginning was live now before the next bad news.

Your instinct to run, makes you my idol. Wow, what courage. I might of done excatly that 5 months ago, but I was in too much pain from the liver mets. I wonder all day, how long will I continue with treatment. I just completed 6 rounds of Taxatere....aka...Taxaterrible. If only we had the crystal ball, is this worth it !

Hope the port is settling in. I am glad you got to visit with Blondie & others

Tomboy · July 2016

(((((Slow))))) What Stephanie said.... Beautiful

dlb823 · July 2016

Oh, wow ~ the responses here -- all so loving and wise -- have me on the verge of tears.

Slow, I'm not TNBC either, but some of the thoughts others have already expressed were exactly my first thoughts, especially possibly looking for gentler chemo options -- maybe something like Abraxane, rather than Gemzar? I also wondered about Ibrance, which is turning out to be a wonder drug for many of us. Although it's normally paired with an estrogen suppressing med, Bestbird's input perhaps justifies trying that sort of combo.

And lastly, with some reservation, I want to offer to PM you or anyone here a link to a video just posted today on FB by a young, 35 year old mother, who has decided to stop active tx. I haven't asked for permission to repost it, and it might be a bit hard for some to view, but it really helped me better understand when it's time to make the Hospice choice, and I would feel comfortable sharing it with you, if you're interested.

Such a tough decision. I hope and pray the support here will help you feel at peace with whatever choice you make. (((Hugs))) Deanna

ibcmets · July 2016

Slow Deep breaths,

I understand your dilema. You have received good responses. I'm stage IV from the start in June 2009. I was ER+ and did well on Femera for 5 years. Lots of progression & other mets in other areas now. I started with ibc with bone mets; progressed to liver & pituitary gland last year. I did well on tac chemo to start with, but could not handle even the easier chemos last Oct through Feb this year. qol was horrible, in bed majority of day and I did not stop vomitting & my abdominals were doing painful sommersaults. I lost my balance 4 x before breaking my wrist. My family stepped in and spoke with my onc to stop chemo and I went to Chicago for my brothers & sisters to care for me. About 3 months after chemo, which is now TNBC I feel better but not on any treatment. Anxiously waiting for new onc to treat pituitary & brain mets and check my status with PET scans & continue my Xgeva shots for my bones.

I've had to think about not being here in the near future. I never know when severe progression is going to happen again or what my status is currenty.

I was told that if I went into hospice because I can't do chemo, that I would have to give up treatment for all my mets. The Xgeva is doing well and Im comfortable with them watching & treating my pituitary after surgery last Aug. Hospice coordinates pain relief & family help but your insurance will not pay for other treatments on hospice. I'm hoping to possibly gain 5 more years at least still being treated without chemo. Maybe immunetherapy will come out soon for bc.

This is a tough decision for you. Qol is very important. Talk with your family and doctors about what you feel would be best for you.

Terri

Anonymous · July 2016

Thank you so much for all that you've shard with me. It's such an incredible feeling to have the input of those that have had to make these difficult decisions. I'm emotional just reading all of your beautiful responses.

DMM, Yes, I believe I can start treatment and stop if I need to. I think the question for me is whether I want to go in that direction, knowing it didn't work the last time. I feel pressure from my medical team to make this decision quickly, I haven't been ready to make that choice. The implication is if I wait too long, chemo will no longer be an effective option for me because my nodules are growing so fast. I've always written down my experiences whether in a blog or on the computer. Thank you for that suggestion. It has been such good therapy for me over the years, although since my MBC diagnosis, I've been at a loss for words. My family, better than anyone, knows what I've been through with all of my illnesses. I was in a hospital bed, at home, for over a year and my DH and daughter took care of me, along with home healthcare. For the exception of my DH, the rest of my family wants me to do chemo. For their own reasons, they can't understand my hesitation. I know they are scared of losing me

blainejennifer, I like the tasting menu description. It's good to hear you got so many quality years. That's really what I'm after. Right now I'm feeling pretty good. I do have some limitations, but I'm still able to enjoy my life. I've read about the Gemzar/Carbo combo they want me to take and like everything else cancer related, everyone reacts differently. I failed to mention that when I contracted Flesh Eating Bacteria, I was on a clinical trial for Enbrel, a drug that lowers your immune system. The immunosuppressant drugs scare the tar out of me for that very reason. I do realize that I've got severe PTSD from my past experience and I know I've brought much of that baggage into my BC diagnosis.

Meow, Thank you for responding. I feel like everyone on BCO has good information to share no matter what stage. I appreciate you caring and posting.

Bestbird, Your MBC Guide has been such a tremendous help to me. I did ask about immunotherapy but was told I'm not a candidate due to my RA. I'm also researching trials that the ACS sent via email. There are five trials I'm researching and I will call tomorrow to see if I qualify with my RA. I do remember reading about hormonal treatment in your guide and that's one question I still need to ask my MO.

pajim, I think that's another area where I'm really struggling. I know I'm supposed to do what is best for me, but I have this family that really wants me to do chemo. I don't want to disappoint them. I think if I was single and didn't have children, my decision would be a bit easier. I thought I had made up my mind to at least try a few treatments to see how it goes, but I don't seem to be able to get myself to the treatment center. I keep coming up with reasons not to start. They may be good reasons, but I know I'm just prolonging the decision hoping that all will become clearer with time.

Stephanie, Thank you for taking the time to respond. I know you've had a difficult time lately and I feel very grateful to read your words., as well as all others. PTSD has very much been a part of my life since my Flesh Eating Bacteria diagnosis. To this date, it's been the most traumatic medical event in my life. I don't think I've ever gotten past the fear of infection. I think that experience has guided all of my BC decisions. Chemo equals infection to me. Yes, I think you're right, I have accepted the diagnosis and not the prescribed treatment. I lived in fear every day while doing chemo and was so relieved to finish. The TN mets diagnosis means chemo for life, which to me, equals fear for life. I so admire your fortitude living with MBC for as long as you have. Even with all you're going through at this moment, you're still sharing yourself with others. Truly amazing. Your many years living with this disease gives me much hope.

Holeinone, I've seen you posting on the D&D thread and I was so sad to read of your progression. Thank you for giving your input. I'm not feeling much like an idol or courageous. I just knew I wanted to fulfill a promise I made to Blondie, and I wanted to do what my DH and I had been planning to do for years - a cross country trip. I was worried that if I started treatment, it would never happen. So we packed up and took off. My old and new MO wasn't happy about my decision. I wish we all had a magic pill to take. It still angers me after all this time, they haven't found a cure.

Tomboy, Love you dear friend.

dlb, I agree, the responses are amazing. You're all so kind and wise. Thank you for the suggestion, I will ask my MO about Abraxane and Ibrance. Another BCO sister was kind enough to help me make a list. She isn't stage 4 but she is so amazing and helpful. I am very much interested in receiving your PM of the video. Thank you for your kind words of support.

ibc, It sounds like you've been through so much. I'm thankful you've had seven years so far. I've heard wrist breaks are so painful. Thank you for sharing your experience with me. I hope you get those five years and many more.

Thank you for all you've shared with me. I know I've got a lot of thinking to do and everything you've all shared has helped tremendously. I did cancel my chemo appointment today, and so far, I haven't heard from my MO. I think she is out of the office today. I've found some amazing friends here on BCO and was so fortunate to meet many of them. I'm not sure how I would do this without all of the support I've received here.

zarovka · July 2016

SlowDeepBreathe - One more thought here. We're talking about a deep fear of this treatment. It could be a divine message to take a different treatment path or it could fear of something else that is interfering with your treatment choices. Is there anyone in your life with whom you can talk about fear and your connection with the Spirit. I am a spiritual person but it is not something I usually spend a lot of time on. However with cancer, the emotions are overwhelming. I have take some time periodically to ground myself spiritually. There are people in this world who are very connected to the spirit and able to share it. I've done well getting some personal counseling. It's helped alot in knowing when I am on the right track for myself despite all the drama around me and the torrent of emotions going on inside me.

>Z<

Rosevalley · July 2016

Slowdeepbreaths- First off I feel and know your situation. I am so there. I had one foot in hospice in Feb and still can not believe I am alive and here in JULY! I too was afraid of chemo again and worried it would be miserable and make my QOL shit. I have a 15 year old still at home so I have tried herceptin -zip, Doxil- N/V zip markers doubled, faslodex -worked for a while stopped, Ibrance puked my guts up, Taxol-worked then had terrible allergic reaction, Abraxane- didn't work markers up, NOW I am on Gemzar. It's working. I just had my second infusion yesterday and I feel better. I had diarrhea at first and terrible gas but since yesterday very little. I can eat again. My labs are fine. This is not so bad. I am losing my hair and finally shaved it all off. My ascites is the same. So before you bail try Gemzar. It's really doable. I understand your fear though.

Holeinone · July 2016

Slow, did I do the math right, you are only 41?......I just turned 61. I really have had a full life, but like all of us, I want more. I am scheduled to have kyroplasty on 2 vertebrates. I told the spine surgeon I was indecisive because of my obvious short lifespan. He asked what my MO told me on a timeline. I did not ask, cause she does not seem to want to give guesstimate. I told him Internet says 22 months. He assured me that is just a #, many people live longer than the stats. I do not want to do this, ( although seems like a easy surgery ) but I am in pain.

Hate taking pain meds, but I do. Whatever you choose, we all "get it" & will be here to support you. I am hoping to get medical mariquana oil. Not legal were I live, but a 9 hour drive to Oregon.

dbl, I would like to view that video, if it's not too much hassle for you. Thx...

NicciJ · July 2016

SDB, so so sorry about your dilemma. I was looking for a Gemzar board, which for some reason something made me think this might be. I believe that is what my onc is putting me on next. Port going in next week so I was looking for some of our wonderful gals to load me up with some info and personal experiences. Anyway, I did want to tell you that my onc said they were doing immunotherapy trials right now at TX Oncology where I go using Keytruda, but it is only for TN patients so I would not be able to participate. Not sure if this is one of the trials you have checked on and I don't know if the RA would be a problem or not but you could ask.

Anonymous · August 2016

I'm sorry I didn't realize there were more responses here. I've been off BCO for a bit, trying to get my head on straight.

zarovka, Thank you for your suggestion. The spiritual part is a work in progress for me. I do realize that I've got some issues - PTSD from previous diseases that definitely influence my BC treatment choices. I will be asking my MO about counseling on my next visit.

Rosevally, Thank you for taking the time to respond. I know you've also had a difficult time and I appreciate your input. I've been cheering you on from the sidelines for quite some time now. I'm thrilled to hear the Gemzar is working for you. I'm glad you can eat again! I know how you've struggled with your tummy. My MO said I wouldn't lose my hair, but I've been reading that many do. Honestly, this has been the first time that I'm feeling half way decent since I did my last chemo. For some reason, my RA has been in remission most of the time, and I'm getting around so much better than I was. I want it to last as long as possible and I know starting chemo again will start that whole cycle over again. I also feel like once I start again, I will be on chemo for the rest of my life.

Holeinone, I wish I was 41. I'm actually 53. I understand about wanting more time. When I was sick in 2003, all I asked for was time to finish raising my kids. I've been so grateful for each day I've gotten since then, but now I feel like I want more time too. I would love to see my grandchildren someday. Plus my DD and her DH just moved six minutes away from me. I'm sorry you're in so much pain. The decision to have surgery must be so difficult. I'm also checking into medical marijuana oil. It's legal here in CA and I've read a lot about it the past few weeks. Thank you for your encouraging words of support.

NicciJ, Thank you for the info on the trial. I've called about several immunotherapy trials in the last couple of weeks and I'm finding my RA disqualifies me. I've been told they want clean numbers in their trials. RA is treated by suppressing the immune system, totally opposite of what they are trying to achieve with immunotherapy. I WILL call about the one you suggested though. I was on a trial for the drug Enbrel when I got Flesh Eating Bacteria. I was hoping to find a phase III trial due to my history. I hope you're able to find a thread on Gemzar. As I'm sure you know already, the people here on BCO are wonderful. Thank you for taking the time to respond. I hope treatment goes well for you.

I updated another thread I post to often with this info, so I thought I would post it here too.

In May my pet scan which was a month after my lung surgery, showed a 4 cm mass, what they thought was a bone met on my rib, an enlarged hilar node and fluid in my lungs. The bone met was in the same spot where they had my chest tube placed when I had the surgery. My question was can't everything you're seeing be a result of the surgery? I was still very sore and I knew I was still healing. My new MO asked the surgeon that very question. I was told no, it's more cancer. They also found a small nodule on the opposite lung (right side). I was told by my old MO that I would have 6 months to a year to live with no treatment. Yikes!! Totally my fault for asking that question

Fast forward to the results of my July CT scan with contrast. They are now calling my 4 cm mass a granuloma, they no longer see a met on my rib, the fluid has resolved and my hilar node is still enlarged. Now they are seeing three more nodules on the opposite lung (right side), which brings the total to four nodules in the right lung. Two are around 1 cm the others are tiny - too small to biopsy. My tumor markers are NORMAL.

So now I'm asking myself if my body healed what they thought was cancer in May, or maybe they read the scans wrong, and what they were seeing WAS the result of my surgery, just like I thought.

My DH and I had a very long chat with my new MO about quality vs. quantity of life. Once again, I cancelled my upcoming chemo. She also agreed to scan me every 6 weeks.

I've been making many positive changes in my life the past couple of weeks. I changed my diet - cutting out dairy, sugar and red meat, I'm getting exercise, I've started meditation, I've signed up for a Reiki class, I'm researching supplements and most importantly, I'm getting more sleep. Trying to coordinate all these different components has been a challenge for me. Time management is next on my list.

Thanks again to all that responded. You've all helped me more than you know. Love and kindness to all.

zarovka · August 2016

SlowDeepBreathes - I used to write long posts about sources of error in CT scans. At some point, i think they are more useful as a form of mental torture than in guiding treatment. I think radiologists in particular believe them more than they should. In any case, don't assume the prior scans or the earlier scans are correct especially with regard to small changes. CT's are just not that accurate.

Focus on your lifestyle changes and QOL. I never rule out the medical standard of care, but I put more emphasis on QOL than the average oncologist. Nothing more important for long term survival.

Please let us know how you do.

>Z<

ruthbru · August 2016

Hi Slow, I just happened upon this thread. Just wanted to let you know that I am thinking of, and praying for, you.

NicciJ · August 2016

SDB, please do keep us posted. It sounds like you are making lots of positive changes! Good for you! I would love to hear how you like your Reiki class. I didn't know what that was until I looked it up. It sounds wonderful and I hope it helps with these hard decisions that you're faced with.

I, myself, will be getting results from a CT on Wed that was done because my tumor markers jumped over 200 points! So I am scared to death to hear why that happened. If you like your class real well, I may look for one here in Austin. Prayers and hugs!!

Anonymous · August 2016

Zarokva, I'm starting to agree about scans. This last one sure left me scratching my head. I'll be keeping a close eye on any perceived progression and in the meantime, I'm doing my best to get my body as healthy as possible.

Ruth, You've always been so kind to me. I really appreciate your friendship and I love every card I get from you. I enjoy hearing about your adventures and you've always been a great inspiration for me. Btw....love your new avatar picture.

Nicci, My Reiki class is on the 22nd. I've heard so many great things about Reiki and I'm excited to try it. I hope the scan results gave you good news. I'm keeping you in my thoughts. Please let us know when you get a chance. In the meantime, I'm keeping my fingers crossed for good results.

NicciJ · August 2016

SDB, Actually, my scan results were not much different than the previous one. Very odd. We are not sure why the jump in markers like that happened. Really didn't need the added anxiety! Thank God it was not anything major, at least as far as this scan shows. Also, did the first round of Gemzar while I was there yesterday. So far do good. Just really tired, kinda achey. Nothing really new for me. I look forward to hearing how your class goes. I have no board for Gemzar so will check back for sure!

ruthbru · August 2016

I am still using your bookmark, Slow Smile

Tomboy · August 2016

me too!

Tomboy · September 2016

As Always, thinking of you every day, Beppy. I love you and support you no matter what you choose. I just wish your head would clear, and that you get to do what ever you want, every day.

To chemo or not to chemo-that is the question.

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