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Latest message from Nancy

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Nancy sent me a long text this evening. She told me I could post it for all of you.

Wanted to let you know I am feeling much better. Fluid has lessened around my feet and groin. I had a cath placed into my abdomen to drain it. I am scheduled for lupron next month and hope to be ready for a new chemo regimen the following month. I've been trying to get out of bed more and have been having to drain the ascites daily. I have no pain and am on a pain management plan. Not being used to medication, it makes me really tired. I've had a lot of guests which wears me out too. I am not giving up hope for a new chemo option. Dr S is the one who suggested this route. Please give my best to all and feel free to post my message and ask any questions.
XOXOXO

clamryn's picture
clamryn
Posts: 508
Joined: Jun 2010

Carlene... thanks for posting. I have been thinking about her so much. I am so glad she is feeling better and she is not having pain. That is great news. Now we just have to get her up and going and it sounds like she is giving it her all. I am definitely thanking the Lord tonight for his blessings.

Linda

mopar
Posts: 1950
Joined: May 2003

Thank you for this update on Nancy. Please tell her I'm sending lots of love, hugs and prayers. So glad to hear they are managing her pain. But most of all, glad to hear that her spirits are good and she is not giving up.
Monika

kayandok
Posts: 1223
Joined: Jun 2008

for posting!
Nancy, if you are reading this, I want you to know you are in my thoughts every day! Don't give up!
love,
kathleen

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Kathleen....

She doesn't log onto the computer any more. The pain meds make her so woozy, it's hard to navigate to the right place, so it's easier for her to text or just talk on the phone. She calls me when she feels up to it, and things are not crazy around her house. Her sister is there to help with the house and kids, plus her mom comes, and other friends and family. Nancy is loved by a lot of people!

Carlene

Christine B.'s picture
Christine B.
Posts: 137
Joined: Sep 2010

I would like to add my voice to the chorus of gladness to hear from you and prayers that you will soon be up and about.
Love,Chris

srwruns's picture
srwruns
Posts: 343
Joined: Oct 2010

good news, keep it coming.

LaundryQueen's picture
LaundryQueen
Posts: 682
Joined: Mar 2011

Carlene: please encourage Nancy to get on TPN. There is a limit to how much protein a person can lose with ascites before the low protein starts causing the ascites. Thanks for sharing the encouraging news.

LQ

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

I'm sure Nancy has had this discussion with her doctors. Not sure what they decided on, but Nancy is an RN and I know that she is aware of the benefits of TPN feeding. It was the only way I could get nourishment in the hospital because I had an ilius and once the vomiting started, they could not get it to stop.

Her TPN feedings bought Jayne A some extra time, too. Like me, she was 12 hours on and 12 hours off, so you are really tied down but they started mine at 9PM, so I slept thru most of my "meal."

The nurses monitored my blood sugar while on TPN and I had to have insulin shots once or twice. I am not Diabetic. In fact, I tend toward low blood sugar.

Edited my post after speaking to Nancy this AM....
She has an order for IV fluids, if she wants them, but she is trying to keep her intake of fluids down so as not to increase the edema and ascites. She does not want to do TPN yet because she feels like her caloric needs are minimal (no exertion) and are being met orally.

Carlene

LaundryQueen's picture
LaundryQueen
Posts: 682
Joined: Mar 2011

Carlene: Thanks for following up on the TPN issue. In my opinion, Nancy is kidding herself about getting her protein requirements met orally. Because of all the ascites that Nancy is having drained off, I think that Nancy is canabalizing her muscle tissue--that includes heart tissue (another source of protein for the body to tap into when someone is in the condiditon Nancy is in).

Nancy had so much ascites drained--ascites is full of protein! It sounded like Nancy had a port put in so that she could continue to drain the ascites--there's more protein lost.

This situation is a slippery slope: the lower the plasma protein level gets from the protein loss via ascites, the lower the osmotic pressure where the body cannot keep fluid in the venous circulation, therefore, the more fluid leaks into the belly, consequently, the more ascites needs tapped off...you get the picture. This has very little to do with Nancy's activity level or what Nancy is eating. If you ask Nancy how her muscle tone is in her legs & arms, I wouldn't be surprised if she is shrinking & Nancy wasn't a big person to begin with.

Cancer makes a protein-blocking substance that makes it difficult for the liver to synthesize adequate amounts of the necessary plasma proteins, that's why you find people dying of cachexia (wasting away like Jayne did before she was gone) and will do so even if their cancer isn't that extensive.

You may not want to share any of this with Nancy--you are a good friend to her. OR you could just ask Nancy if she knows what her "prealbumin level" is. If the prealbumin level is more than 20, then Nancy is doing fine. However, I think she has no idea how bad her state of malnutrition is and I would be surprised if her doctor has even checked the prealbumin level. I would LOVE to be wrong about this. Please tell me that I am and I will be elated. Hahahaha!

Try doing a Google search on prealbumin levels and cancer survival rates--it's important enough of a a subject that there is research on it. The survival rate is pretty grim when the prealbumin level is less than 10. That's why I am making such a big deal about this--you probably think I am over-reacting about this but I cannot help it. Forgive me.

I have a personal opinion that the ascites is a bigger problem than MOST oncologists are aware of and poor management of the ascites contributes to the dismal survival rates for those of us riding the teal bus.

I think that, despite her medical eductation, Nancy can't possibly be thinking straight at this time due to the pain meds. AND most nurses are ignorant about prealbumin levels--that's something dieticians would know more about.

What I think Nancy needs is just IV amino acids (probably every other day) but most doctors won't just give just Aminosyn IVs, they go all the way with TPN (which messes up the blood sugar). I was on Aminosyn & lipids for several months and I think it helped save my life. I know TPN helped save your life, Carlene.

If you think sharing this information will only upset Nancy amd do no good whatsoever, then I respect that you do not pursue the TPN issue with Nancy any further.

I am not an oncologist, or even a doctor. All of the above is just my personal opinion (I learned a lot of this from the integrative osteopath who is treating me) and I couldn't live with myself if I didn't share it.

Now I'm done with the subject.

LQ

Tethys41's picture
Tethys41
Posts: 1057
Joined: Sep 2010

I'm with you LQ. The protien levels are critical. I produced a lot of ascites after my surgery, getting about 2 liters drained every three days for two months. My albumen level dropped to 1.0. If it wasn't for a hospitalist putting me on TPN, I would not have made it. I ended up on TPN for three months before my levels were back to normal. There was no way I could have consumed enough protien to get my levels back up. The great side effect was that two weeks after starting the TPN, the acities stopped.

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

I did mention TPN to Nancy and her care is being directed by an outstanding team of specialists from MSKCC. I have a lot of faith in Dr Sabbantini. I also think Nancy has a great support system, and I really believe every viable option will be explored and addressed.

TPN for advanced cancer is not alwaya a good idea. I found a number of studies that concluded the risk of complications outweighed the potential benefits. Weight loss with advanced disease is significantly more complicated, according to these studies, than simply replacing calories, as cancer produces a multitude of chemicals that also lead to weight loss.

Carlene

LaundryQueen's picture
LaundryQueen
Posts: 682
Joined: Mar 2011

Thanks, Carlene. I think it's the glucose in the TPN that is the problem (causing insulin spikes & promoting inflammation thereby promoting cancer). I'm gonna see if there is any research on amino acid replacement in cancer patients.

Drat! I promised that I would drop the subject! OK, I mean it this time.

LQ

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

It's ok. I think it's fine to promote any information you might find.

Amino acids are virtually always included in TPN, I believe. My TPN was made up outside the hospital and delivered each night at 9PM (I called it the world's most expensive take-out food). It was a "standard" TPN solution, to which they added a lot of fat/calories because I was unable to eat. I lost over 30 pounds in the 16 days I was hospitalized.

Carlene

Mwee's picture
Mwee
Posts: 1316
Joined: Nov 2009

Yeah! Thanks (again), Carlene. Nancy has been on my mind daily and it really is good to hear that she is feeling some better and not in pain.
(((XOXOXO right back at ya))) Maria

Cindy Bear
Posts: 563
Joined: Jul 2009

This is great news. So happy that Nancy is home, pain free and gearing up strength for a new battle plan. Thanks for the updates Carlene.

childofthestars's picture
childofthestars
Posts: 246
Joined: Jan 2011

I was so pleased to see you post (albeit via Carlene). Sending you lots of healing and bright blessings. Keep up the fight. We're all routing for you.
Here's to better and better days.
(((hugs)))
Michelle x

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Clearly Nancy has been through a lot lately, but if she is texting and treatment-planning she certainly isn't letting it beat her down too badly!

I agree that nutrition needs to be a part of 'the plan' to get things back on track.

Nancy, please know that I think of you every day and root for you and pray for you. Today marks 4 weeks without real treatment for me (I think of the tamoxifen/megace as a placebo since I am ER- and PR-) as I must keep my counts up for my radioembolism June 1st. Try not to stress about the break from chemo; sometimes you just have to let your body take the lead and trust in the process. ((((Nancy))))). Warm and gentle hugs, sweet girl. Rest; nurture your inner strength; give yourself some time before jumping into a new chemo. I'll be interested to see what they start you back on when you're ready.

LaundryQueen's picture
LaundryQueen
Posts: 682
Joined: Mar 2011

Nancy707: you got that right! Total Parenteral Nutrition (parenteral in this case means intravenous).

Too bad someone can't get the fresh-squeezed juice in IV! Hahahahaha!

LQ

poopergirl14052's picture
poopergirl14052
Posts: 1161
Joined: Nov 2010

Hope the new chemo regiman get s her back on her feet again and back to us too. Thank you Car for keeping us updated..val

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Carlene it's wonderful you have the connection with Nancy not just to keep us updated which we so appreciate but also to give Nancy a way to stay in touch. She has been such a regular on this site, as with many of us, it is a bit of a lifeline and we check in regularly.

Nancy I'm so glad you are able to get up and about more it will help you regain some strength. Sending healing thoughts your way that you can soon be back in treatment.
Annie

Cafewoman53's picture
Cafewoman53
Posts: 735
Joined: Jul 2010

She is so sweet to let us know how she is doing ! Thanks Carlene for updating us when I log on I always hope to see some news about Nancy.
Colleen

vj1's picture
vj1
Posts: 151
Joined: Jun 2010

Thank you Carlene for the update on Nancy. Please forward my prayers and only good thoughts for her.

Verna

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