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A new path forward...

daylady's picture
daylady
Posts: 122
Joined: Dec 2014

Hi Ladies...well, the results of my PET Scan were not good (I did not expect they would be).  The lesions in my liver were arrested in Germany, but there is progression in the lymphatic system that lights up my whole torso like I was covered in fairty dust.I HATE PetScans!  They light up every little spec of anything that can be so small it doesn't even show up on a CT Scan, and then scares the heebie jeebies out of you!!  At this point, there is no clear path forward that would warrant my going back to Germany.  My new oncologist, who I like very much, is suggesting we go back on Avastin, combined with Gemzar.  I am OK with this, it is at least a plan that will allow me to let go a little and get through the holiays.  We won't know if it's working until probably after the first of the year.  He has also mentioned clinical trials, but I am wary.  The testing they have done on me seems to rule out most immunotherapy because I don't have the right markers, so thereality is I seem to be running out of options.  

The last couple of weeks have been surreal.  My appetite and energy level just went completely missing in action.  When I could face food at all, I absolutely craved everyhing I should not eat!  Mashed potatoes and gravy!  Macaroni and cheese!  The idea of vegetables or a salad literally made me ill.  But the hardest....no energy at all.  The lowest energy level in my entire life.  Any hints on how to get it back???  All my children and all my grandchildren are coming home for Thanksgiving so I want to have enough energy for it to be a good visit. 

Just checking in Ladies.  A bit discouraged this week, and working hard to pick myself back up.  Some days are easier than others.  Love you guys, - Helen

 

 

takingcontrol58
Posts: 257
Joined: Jan 2016

Daylady,

I'm so sorry to hear about the results of your PET scan.  I also had metastases to my liver.
I know you are on metformin but besides storing glucose, the liver also stores iron.  I had
very high iron levels when my cancer metastasized. I think I asked you before if you had
been tested for ferritin (iron stores) but never heard the results.  It is is a key driver of cancer
and is ususally tested to monitor the success of cancer treatment.

I personally believe that cancer goes where the food supply is- since you probably have your glucose
and insulin under control with the metformin, since both are in the liver, the only other thing I can
think of right now is that you might have hign iron levels. You don't hear much talk about how 
iron contributes to cancer but it does- every cell needs iron to divide and cancer cells are dividing rapidly,
so they need alot of iron.

I would suggest getting tested for this as soon as you can if you haven't been tested before.
If your problem is iron overload, chemo won't help that.  But there are supplements that will
or chelation therapy. Something is causing your body to still be a ripe environment for cancer
so you just have to do some detective work. Remember, the liver also does detox in our body-
so if it is not working properly, that could be why your lymphatic system is lit up. 

I know you work with a naturopath. Are you taking any supplements specifically for
liver support?

Let's solve this mystery.

Takingcontrol58

CheeseQueen57's picture
CheeseQueen57
Posts: 920
Joined: Feb 2016

Thanks for the update. I’ve been thinking of you. One day at a time and sounds like you’ve got a few options. Try to focus on having a wonderful Thanksgiving with all your family. I’d eat (and do) eat whatever I want. 

Violet123
Posts: 28
Joined: Nov 2017

Sorry to hear of your news Helen.  You sound like a strong and courageous person.  Keep living with an attitude of gratitude. Hang in there.   I am new to this website, and feel the support of the members.   I have not had a PET scan yet.  The oncologist said 3 months after I complete treatment then he will order the PET Scan.  I have completed 3 of 6 chemo rounds, then 5 days x 5 wks of radiation.  I hear what you are saying about craving the food we shouldn't eat. It is hard to stick with the healthy meal options.  Keep us posted on your journey.   We are here for you!

Linda

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1645
Joined: Jun 2015

Linda, Just wanted to welcome you to our board. I hope you are tolerating your treatments well. Half way through chemo! Good for you.

Love and Hugs,

Cindi

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

i am so srrry to hear this.  The one thing you have going for you, is your inner strength , and you have high levels of that.  I hope your energy gets a little better.  I also understand the appetite problem. Nothing tastes good right now.  I have gone to drinking Premier Protein And  Carnation instant breakfasts.  It does have some protein and hydration.

Hugs and prayers, Lou Ann

Double Whammy's picture
Double Whammy
Posts: 2827
Joined: Jun 2010

Of course, I could think of some more colorful words, but I am trying to clean up my act a bit.  Helen, I am so sorry to hear your news.  Hang tough and keep an open mind to options.  I'm sure you will.

Best,

Suzanne

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2736
Joined: Mar 2013

oh Helen, I am so sorry to hear this. You have every right to have a hard time picking yourself up.  You do have a little time before Thanksgiing to figure out what is going to help you regain your energy.  You all are in my prayers. 

ncg007
Posts: 133
Joined: Nov 2015

Helen,  I'm so sorry to hear this news and can understand how discouraged you are.  But never give in and never give up!  You are amazingly courageous and an inspiration to us all.  Sending you hugs and prayers.

Nancy

cheerful
Posts: 256
Joined: Apr 2011

Helen: 

  Regarding UPSC, I would follow your oncologist's instructions as he knows what drugs will help you and work for you. Give yourself a little break if you can.  I wish you well in going through your treatments.  Sending you good wishes.

Cheerful

a/k/a Jane

Gardena
Posts: 102
Joined: Jan 2016

Helen,

I'm distressed by your scan results. This disease really blows. If your body is craving certain foods, I think you shld eat them - perhaps some in more moderation than others! Dehydration can cause tiredness, so keep up your fluids.

As for immunology drugs, I know Luann is on Keytruda,cwhich was FDA approved for endometrial cancer in May, and I'm on Opdivo, which has not been approved and being given to me experimentally and without charge from Bristol Meyers. Opdivo is working for me.... I dont know of any other immunology drugs being used for this cancer, but I do know Opdivo and Keytruda target different pathways/mutations, so I encourage you to ask your onco about both drugs, if you haven't already.

I'm sending you loads of positive energy and good thoughts, and its my hope that all the love for you on this board buoys your mind, body and spirit.

Gardena

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1645
Joined: Jun 2015

Helen, So sorry to hear this news. I hope the new chemo combo beats this back into remission. It's great that you have found an oncologist here that you like and are comfortable with. I'm with a few of the other ladies..... Eat whatever you are craving. You need to build up your strength. I don't have anything to offer on the energy front. Maybe the drinks that LouAnn suggested will help? Enjoy the holiday with you family.

Love and Hugs,

Cindi

EZLiving66's picture
EZLiving66
Posts: 1405
Joined: Oct 2015

I was so hoping things would go a different way. Keep the faith since new things are coming on the market all the time. As for the fatigue, I really don't know what to tell you to do except YOU come first. If you need to rest. When you have company, just rest. When our son got married this summer we rented a room a the hotel where the reception was. We never intended to stay overnight but I knew there was no way I could make it through the night without resting. I had told the bride's parents my plan and they were fine with it.  Take care of yourself; your family will understand.

Love, 

Eldri

SandyD's picture
SandyD
Posts: 130
Joined: Oct 2015

Helen, I would feel the exact same way you do! You have every right to feel frustrated and worried about what's ahead! I sure would! Allow yourself to feel what you're feeling. At the same time opening yourself to "the path forward" as you say is important. A lot of people who thought they were out of options have benefitted from clinical trials. Depending on the design of the clinical trial there could be one that will allow you to continue the avastin/gemzar chemo along with the addition of an investigational drug. In the meantime do whatever helps you get through and makes you feel good! Enjoy the holidays with your family! Love to you,

Sandy 

SF73
Posts: 281
Joined: Oct 2017

wishing you strength and many enjoyable holidays with your family. Glad to hear your new oncologist recommended a new regimen. It sounds promising. Sorry that you don't have much energy. I think consuming carbs in moderation should be fine until you get your appettite back. Are you on Megestrol? I believe it really helps with my appetite. You still plenty of time until Thanksgiving to get your strength back. 

Kaleena's picture
Kaleena
Posts: 1981
Joined: Nov 2009

Keeping you in my thoughts and prayers.

Kathy

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Try to take it one day at a time and remain hopeful. It seems that new and innovative   treatment is happening daily.  Technology will eventually cure cancer, I think, or at the very least make it another chronic condition, like HIV. You have received exceptional care and I think that will make a difference. As always, I will keep you in my thoughts and prayers.

Cathy

rcdeman
Posts: 257
Joined: Aug 2016

Dear Helen,

I'm sorry that your PET scans didn't show any good news. I was so hoping for good news from you. :(

I think right now you have to just take it one day at a time and try to take care of yourself. If you don't have an appetite, LouAnn's suggestion of drinking one of those healthy protein/supplement drinks might help give you the energy you need. If eating vegetables is difficult to do, you could always buy those vegetable powders that you mix into water or into drinks that take the place of multiple servings of vegetables such as Aojiru, Kiwami greens, or barley grass powder. I also think takingcontrol's advice sounds quite valid. Anything inside you could be a factor of causing the cancer cells to grow and spread. It could may well be decreased liver function or high iron levels. Personally, I don't know anything about this, but it couldn't hurt to test your levels and see where you fall at. Talking with your naturopath about steps you can take is a good idea as well. It's also good that you found an oncologist you like to work through this with you.

Praying that you stay strong and get through this!
Rebecca

Soup52's picture
Soup52
Posts: 903
Joined: Jan 2016

Oh Helen , I’m so sorry to hear of your acne results! I’m hoping your oncologist plan will provide some help. I’m hoping you will enjoy the holiday with your family ! You are a courageous fighter !

Soup52's picture
Soup52
Posts: 903
Joined: Jan 2016

I don’t know how spell check came up with acne!!

MAbound
Posts: 1025
Joined: Jun 2016

It's so hard to hear this after all you have been through. It helps to hear that you do have a plan to keep going forward. It must be the business woman in you! Wink You couldn't have accomplished all that you have without that "can do" spirit and I hope you never lose that. Ain't no fat lady singing yet!

As for those cravings...that's your body telling you it needs something it's not getting, so maybe you should listen to it and not worry so much about eating perfect. The holidays seem like the perfect time to loosen up a little!

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

I haven't responded to your post because I keep waiting for the right words to come, but they just wouldn't. I'm so sorry. These are my un-right words: to H*LL with scans. There's nothing actionable and your liver is behaving itself, so those miscrscopic bits of fairy dust are just that - dust - until something more substantial comes up. No wonder you have the heebie jeebies; who wouldn't? Given the havoc those scans wreck on our mental health, I often wonder about the spillover on our physical health. It almost makes me nostalgic for the days when the doctor doled out information on a need-to-know basis. As it is now, we have TMI and nothing we can do about it, which is the height of anxiety.  I hope that by now you have more energy and are able to look forward to Thanksgiving in the way you deserve. Of course you're down but you're far from OUT, and there are still options ahead of you so please try to focus on that. You said you're not eligible for immunotherapy, but they're finding that combining two kinds of therapy at once can result in a response where none existed before so I have hope for you in that area. Please know you are in my prayers, best always, B

henhill's picture
henhill
Posts: 123
Joined: Aug 2016

I have every hope you will be on a different, better track.  My last experiment didn't pan out either. At the end I was in awful pain. lost 20 lbs and my appetite, but the new treatment caused this to reverse itself.  Hard, but working.   Hugs to you

 

 

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