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Old 04-30-2013, 05:39 PM   #1
CoolBreeze
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Can't do Gemzar...sigh...the only one that ever works

I think my last post was a good one - gemzar shrunk my liver tumor by 50% so we decided to put off the TDM1 and stick with Gemzar. I was happy!

However, I've not been able to do Gemzar in weeks as my grans are steady at 1.3. They won't come up. My reds are about 9.9 and are coming up (they were 9.0 a week ago) but the whites are stuck.

They cancelled all my chemo appointments until I see the doctor. Now I'm sad.

I see my doctor tomorrow. I dont' think he can switch me to TDM1 with my blood this low.

I have a horrible reaction to leukine/neupgen/neulasta. I become almost hallucinogenic and the pain is intense, worse than having a baby. In fact, it feels like I labor through my spine. I decided if I'm dying anyway I wasn't going to put myself through that so have told the nurses and doctor that I refuse the colony stimulators.

I take dilaudid, oxy and norco so it's not like I can't take a pain-killer but they don't work for that kind of pain. If morphine or something is more powerful then maybe I'd be willing to try it one more time but what if it's not? Does anybody know - somebody who is NOT opiate-naive? I take a lot of drugs.

In the meantime, I am going downhill. Pain increased, (although manageable) and I'm so tired. It's hard to describe how tired I am. I sleep until noon or 1:00 and need a nap about 4:00 to 7:00 (my son is coming over so I've overloaded the ritalin to stay awake) and then go to bed again about midnight.

I guess this is the beginning of dying? I don't know. I've had mets for 2 years so am about the average for survival. I've heard about people getting better (temporarily). But since I haven't chemo in weeks, I figure this is cancer SEs and not chemo, even though the cancer shrunk. And, it's only in the liver and only one or two spots, but it is against the portal vein. I know people have more cancer than me so why do I feel so bad?

Long shot, but anybody experienced this? Have you had this kind of fatigue/exhaustion? Pain with neupogen? Whites that won't come up on their own? This is worse than when my reds were 8.0 and I had a transfusion. I wouldn't get out of bed at all if I didn't have children.

I guess I'm feeling a bit depressed. I have been upbeat and accepting of my death and all that mentally, but it is hard when it becomes very physical.

Ideas or thoughts? What I've already done is in my sig file and I'd prefer to only hear from Stage IV woman. There is a difference between doing 100 chemo treatments and 6, sorry but it's true so I am looking for people who have been in my place.

We'll see what the onc says but right now, I have no questions and I have nothing to suggest or come up with.

(Respect you all but am not into alternative therapies)


*hugs*
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08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 04-30-2013, 06:58 PM   #2
Faith in Him
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Re: Can't do Gemzar...sigh...the only one that ever works

Hi Coolbreeze,

Sorry you are not feeling well at the moment. I don't see Xeloda on your list of chemos tried. Xeloda with Tykerb is a good combo and sometimes Tykerb with Herceptin is good too. Have you tried Carbo? Carbo/gemzar is another combo to try.

I hope you get some answers soon.

Tonya
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DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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Old 04-30-2013, 07:54 PM   #3
Mandamoo
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Re: Can't do Gemzar...sigh...the only one that ever works

I'm sorry to hear this. Why can't you continue on Herceptin and Perjeta alone - they shouldn't affect your counts and may give them more of a chance to recover and also possibly keep you stable or better.
I had a cuppa with a fellow TDM1 trial friend the other day - we both got bumped off at the same time - me for progression and she for issues causing liver inflammation and now serious liver problems (this has been attributed to TDM1). She is receiving Perjeta and Herceptin alone and so far is stable so maybe it could be something for you?

I don't know why you are feeling so bad and i am so sad to hear that you are. You and I have had mets about the same time (I have lung mets - about 50+ spots some of which are now over 3cm and now also numerous mediastinal and other neck nodes) and I feel almost normal apart from my irregular, annoying cough. I can't imagine dying yet at all despite my continued progression.

I've done probably as many treatments as you and have already done TDM1 and the Bolero (affinity) trial. Tykerb and xeloda was good for me but not for long. One of my oncs here is enthusiastic about afatinib and neratinib. I am currently on abraxane (just started).

You've stated you don't believe in alternative therapies but I have employed many complementary therapies and believe this helps keep me actively living.

Are you on or have you considered anti-depressents too? Maybe that will help with the low feeling which totally sucks. I do know what it feels like to feel like you are up against a wall - a friend once said to me "but there is always a ladder" I hope that you find yours.
xxx
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40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis

June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions

Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
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Old 04-30-2013, 08:29 PM   #4
cheery
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Re: Can't do Gemzar...sigh...the only one that ever works

Hi Coolbreeze

Sorry to hear you're feeling terrible. I'm also on Gemzar now but with Herceptin and Tykerb for my liver met recurrence. I've been feeling more tired lately (yes, there are days too when I can hardly get out of bed).. but I'm not sure if that's due to the liver or low WBC. My WBC was hovering around 1 but my onco has been kind enough to continue to give me chemo.

So.. what did I do to raise my WBC? My TCM doc is pretty good, his years of experience in TCM is longer than I have lived in this world, lol! I've since told him that I desperately need my WBC to be up and he's thus far been able to keep it up at around 2. I'm pretty thankful for that. I do make sure I have lean beef several times a week too, for the iron and protein.

I've had neupogen shots and it's pretty effective for me too. But the pain I get from neupogen is harrowing to say the least, I do not wish to have go through such unnecessary pain at this stage of my life.

My TCM doc tells me honestly that TCM can only help alleviate the side effects of chemo and enhance the effect of chemo. TCM will not be able to cure me. I do think it's helped me in the last 5 years with all these non-stop treatments.

For WBC, there's research that wheatgrass and Turkeytail mushrooms can help raise the WBC. Personally, I didn't find wheatgrass nor Turkeytail mushroom effective for me.

ETA - you've not mentioned liver enzyme levels. I've had liver injury before (liver enzymes shot through the roof) and it made me very tired too. I took liver essentiale then. Milk thistle and beetroot are supposed to help the liver detox. I do have milk thistle in a daily nail supplement and try to get fresh beetroot but I can't say if they're effective.

Hope this helps and that you'll feel better soon.
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Old 04-30-2013, 09:03 PM   #5
Kim in CA
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Re: Can't do Gemzar...sigh...the only one that ever works

Dear Coolbreeze,

Wow, I had never heard of anyone having such a bad reaction to Neulasta etc. I hope your doctor has some answers for you tomorrow.

Like you, I've had alot of chemo, and it's all cumulative on your bone marrow. I did not bounce back after the taxotere this last time, like I did the first time I took it. I was able to go 8 cycles last time, and this time I was crying "uncle" after round 4! I'm still feeling the effects nearly 3 months after stopping it. In fact I've been told this may be my new normal. I would not have even been able to do the 4 rounds if I couldn't havetaken the Neulasta and Procrit.

Are you still having progression while staying on just the Herceptin and Perjeta? I was so hoping that combo would give you some time to bounce back and not let things get growing again.

Hoping your doc is an "out of the box" thinker and comes up with a plan for you.

Hang in there,
Kim
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Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.


5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.

9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .

11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!

7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!

June -Dec 2004 UW Vaccine Trial.

7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.

Brain MRI @3 months NED!

2006-2011 brain/body still NED

8/04/11 Taking Herceptin break, will monitor with tumor markers.

6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.

7/23/12 CA15-3 now 49.3
Her2 Serum 26.8

8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49

11/7/12 Add weekly Taxotere for 4 cycles

2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.

November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!

Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara

Jan 2016 Begin Kadcyla

March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla

November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
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Old 04-30-2013, 10:30 PM   #6
Redwolf8812
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Re: Can't do Gemzar...sigh...the only one that ever works

If you can force yourself to take a short walk it may help. Exercise always boosts my counts.

Prayers,
Penny
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Penny

July 2010 IDC grade 3 stage 3 er-/pr-/her2+++, BRCA2
Skin mets 11/10
1/12/11 Surgery path - complete response
Rads 2/11-4/11
Liver mets 11/11 now stage IV
Xeloda & Tykerb 12/11
Allergic reaction to Tykerb 12/11
Xeloda only 12/11
Added herceptin January 2012
Progression February 2012.
Started Veliparib (parp inhibitor) trial 3/5/12.
4/30/12 Liver met shrunk in half! Praise Jesus!
6/18/12 another 25% shrinkage, down to @3x3. Thank you, God!
8/8/12 Brain MRI - clear! Praise to You, Lord Jesus Christ!
8/27/12 Thank You, God - another 20% decrease in liver met! Now @ 3.2x1.9.
10/5/12 stable-ish
11/21/12 allergic reaction to carboplatin
12/10/12 stable & progression
12/31/12 liver ablation
2/6/13 ablation successful but new tiny mets in liver. May or not be cancer.
Another ablation scheduled 2/28/13. Cancelled.
2/20/13 started taxotere & herceptin. Pretty toxic. Oncologist says start tdm1 4/3/13. From her lips to God's ears. Praying for no allergic reactions/adverse side effects.
3/28/13 increase in liver mets - number & size
4/3/13 started TDM1
6/25/13 Praise God! Scan shows only one viable lesion and it's smaller.
10/8/13 MRI shows 1 large and two small tumors.
10/11/13 Ablation of tumors. It's in God's Hands.
10/23/13 Jesus and TDM1
12/19/13 Started trial of palbociclib & herceptin after scan showed growth of liver tumor and a questionable spot on rib.
2/6/14 CT scan - previous suspicious spot on rib probably damage from radiation - Praise God! MRI - over 200% growth in cancer in liver.
2/19/14 started Navelbine, Perjeta, & Herceptin combo.
5/2-5/4/14 hospitalized with very high liver function numbers, plus skin and eyes are yellow, plus urine is orange. Feel ok, so doctor not sure if liver failing due to cancer, chemo, or infection. Hospital gets numbers to go down and sends me home. MRI done in hospital reveals cancer shrinking - praise God!
5/6/14 - 5/8/14 hospitalized with no white blood cell count. Released when they go back up, @ 6 days after doctor gave me a neulasta shot.
5/16/14 - informed blood cultures done in hospital are back and that I contracted hepatitis e. Have to take ribavirin (anti-hep med) until liver function numbers are back to "normal" before re-starting chemo. Will probably go on veliparib and temodar this time.
5/26/14 - my birthday - GI doctor informed me that the hepatitis e was completely gone - I didn't even need the anti-viral meds! This is a miracle from God!
5/28/14 - started veliparib and temodar (compassionate use)
8/18/14 MRI shows 90% growth in liver tumors
8/20/14 start Perjeta, Herceptin, & Navelbine. Thanking & giving Glory to God for each moment.
9/22/14 - 9/24/14 Hospitalized with 102.2 fever and neutropenia
11/13/14 ER for high fever and fast heart rate. Got both down with IV antibiotic and fluids. Sent home same night. Thank You, Lord!
12/2/14 MRI shows progression in liver. Grateful to God that I still feel good.
12/11/14 Simulated SIR-spheres. Successful. Real thing (1st lobe) scheduled for the 23rd. Also starting Xeloda on 22nd for 2 weeks because it's synergistic with the spheres.
12/23/14 SIR-spheres in left lobe of liver. On Xeloda 12/22/14 - 1/4/15.
1/7/15 Receiving Perjeta & Herceptin while awaiting next course of action.
2/9/15 SIR-spheres in right lobe of liver. On Xeloda for 2 weeks (started 2/8). Still on Perjeta & Herceptin. Don't know what's next for me. :-)
3/25/15 Final read on MRI report - there are new and multiple lesions in both lobes of liver. Sigh. Praise God I've made it this far!
4/1/15 Started Gemzar & Herceptin. 1st week G&H, 2nd week G only, 3rd week off. Thank You, Lord, for this option.
4/15/15 Labcorp - liver enzymes in 200's. Appointment 4/22 with oncologist to discuss. Also, "radiation recall" in previously treated area? Very itchy. Need to discuss.
4/22/15 Enzymes came down. Received reduced dose of Gemzar only. No herceptin. Will get labs at lapcorp next two weeks since taking break for vacation purposes. Treat radiation area.
5/9/15 ER for severe abdominal pain. Constipation. Sent home with meds and advice to follow up with oncologist regarding jaundice and bilirubin.
5/11/15 Hospitalized for rising bilirubin and jaundice. CT scan reveals larger and more constricting tumors in liver.
5/13/15 Met with my oncologist. Bilirubin came down. If still down by Monday, I'll get chemo. If not, than I guess I'll see you all in Heaven. Praise God. Please pray, pray, pray.
5/18/15 Bilirubin jumped up. Trying lowered dose of Ixempra, with Herceptin. Oncologist is surprised that I'm functioning so well, given the high bilirubin. I have anywhere from 2 weeks - 2 months to live.
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Old 05-01-2013, 01:28 AM   #7
Ellie F
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Re: Can't do Gemzar...sigh...the only one that ever works

Hi Ann
I have hesitated posting as I don't want to upset you especially as you're having a really difficult time at present but I wondered why you haven't had a blood transfusion?
At my onc centre transfusions are fairly common in patients whose haemoglobin falls below 10 as ppl feel very tired and fatigued and it delays treatment.
Penny raised the issue of exercise and I remember a cancer researcher posting that if patients with low counts took a brisk walk 15minutes before they had their blood taken then it would show an increase in counts. Easier said than done when you feel unwell.

Ellie
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Old 05-01-2013, 02:04 AM   #8
Lani
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Re: Can't do Gemzar...sigh...the only one that ever works

Cool Breeze--I came across the following in my reading and am in NO WAY qualified to tell you if it applies to your problem

It seems your portal vein is being pressed upon and that might cause problems similar to those discussed here (PORTAL HYPERTENSION--itself caused by cirrhosis-- CAUSED CHANGED IN THE PERMEABILITY OF THE GUT)

Since noone seems to know why you feel so unwell, perhaps it does have to do with a secondary effect on the permeability of the gut (who would have known it contributed to the problems of those with end-stage scarring of the liver or that it might be helped by something as simple as an old-fashioned beta blocker?)

Perhaps it doesn't have anything to do with your symptoms, but I thought I would provide you with the following so that someone qualified to think about it (even if it means thinking outside the box) might consider if it is playing a role in your problems.

I suppose it couldn't hurt to ask.

Here it is:

Public release date: 25-Apr-2013

Contact: Dimple Natali
easlpressoffice@cohnwolfe.com
44-790-013-8904
European Association for the Study of the Liver
New advances in the management of patients with cirrhosis

Amsterdam, The Netherlands, Thursday 25 April 2013: New data from clinical studies presented for the first time at the International Liver Congress™ 2013 provide new rationale for an old and established treatment option for portal hypertension. Additionally, spleen stiffness predicts the occurrence of clinical complications, which is of paramount importance in clinical practice.

In patients with cirrhosis, increasing blood pressure in the abdominal circulatory system (known as portal hypertension) leads to potentially lethal complications which might be prevented with simple medical treatment. Patients with cirrhosis and portal hypertension have increased gastrointestinal permeability which allows the movement of bacteria or bacterial components through the lining of the gut into the blood stream in a process known as bacterial translocation. Bacterial components such as lipopolysaccharide can be involved in the genesis of complications of cirrhosis.

The first study evaluated the effects of a non-selective beta-blocker (NSBB) on gastrointestinal permeability and bacterial translocation in patients with cirrhosis with high levels of portal hypertension.1 Patients with severe portal hypertension (HVPG* ≥20mmHg) had increased markers of gastrointestinal permeability and bacterial translocation compared to patients with lower levels of portal hypertension (HVPG<20mmHg). Treatment with NSBB significantly reduced HVPG, improved gastrointestinal permeability and decreased bacterial translocation (LPS-binding protein (LBP) -16% p=0.018; IL-6 -41% p< 0.0001) levels.

Patients who were found to have the highest levels of gastrointestinal permeability were also found to be at most risk of bleeding from oesophageal varices; a complication of cirrhosis which carries a high risk of mortality.

These findings provide a new rationale for the use of non-selective beta-blockers in patients with cirrhosis. EASL's Treasurer Prof. Mauro Bernardi commented on the data: "The movement of bacteria from the gut and into the bloodstream is extremely serious and potentially fatal in patients with cirrhosis often leading to complications or death. Beta-blockers have been successfully used in a number of conditions and as a standard treatment to control blood pressure in other disease areas. In cirrhosis, they have been used for decades for primary and secondary prophylaxis of bleeding from oesophageal varices. The results of this study show that besides improving portal hypertension, as it was thought up to now, their beneficial effects are also due to their ability to reduce bacterial translocation which may widen the indications for the use of these drugs in this setting."

In the diagnostic landscape, promising data to support the validity of non-invasive techniques were also presented at the congress. HVPG, an invasive measurement technique currently considered as the best predictor to identify progression to severe scarring of the liver and disrupted essential body functions (clinical decompensation), was compared to techniques such as the evaluation of spleen stiffness (SS) combined with the MELD** score.2  

The study showed that in compensated (early) patients with cirrhosis both the SS (p<0.0001) and the MELD (p=0.016) score provided an accurate prediction of clinical decompensation, and their combination in a new score had a predicting power even superior to that of HVPG.

Prof. Mauro Bernardi added, "HVPG is an invasive technique, which can often be discomforting for patients, is only performed in specialised centres and needs experienced operators to be fully reliable. While further studies will be required, if non-invasive techniques continue to present accurate predictions, they would be welcomed in the overall management of compensated patients with cirrhosis."

Disclaimer: the data referenced in this release is based on the submitted abstract. More recent data may be presented at the International Liver Congress™ 2013.

###

Notes to Editors

*HVPG or hepatic venous pressure gradient is the most widely used parameter for assessing portal hypertension

**MELD is a scoring system for assessing the severity of chronic liver disease

Compensated cirrhosis, where the body still functions fairly well despite scarring of the liver, is strongly associated with the development of portal hypertension.

Notes to Editors
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Old 05-01-2013, 12:25 PM   #9
KsGal
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Re: Can't do Gemzar...sigh...the only one that ever works

Ann, first off im so sorry to hear that you couldn't tolerate the Gemzar. I can't believe when you finally found something that had such a wonderful effect on your tumors, it has to be something your body can't handle.
I have the fatigue you have, not quite as bad. Like you, if my son didn't live here with me, I would probably not get out of bed at all. As is, I get out of bed and do a few things around the house, and then lay down on the couch and take a nap. Even a shower is exhausting. In my case, my doctor said it was because of my elevated liver enzymes, and there isn't much I can do about it, other than stopping my pain meds and Tykerb. Do you know if yours are elevated?
Morphine is stronger, but you have been on so much pain medication I don't know how effective it would be for you at the dose they normally give. Are you on a pain patch at all? I don't know if a transfusion is possible like was mentioned a few posts up, but discuss it with your doctor. I wish things were different for you, and I wish I had some kind of genius idea. Sending you lots of prayers and positive energy..
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Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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Old 05-01-2013, 01:32 PM   #10
ElaineM
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Wink Re: Can't do Gemzar...sigh...the only one that ever works

If you are not into alternative therapies would you be able to include various kinds of mushrooms in your diet? They improve the immune system which is a large part part of the white blood count. Would you be willing to eat berries and more veggies to increase your white blood count and improve your immune system?
It would be very easy to make a smoothy with some fresh or frozen berries, other fresh or frozen fruits, yoghurt or almond milk and protein powder. You could even add a little flax meal or a small amount of kale to the smoothy for extra nutrition.
It is too bad you are not willing to consider alternative therapies, because even echinecea and vitamin c can increase the white blood count. Liquid iron with a little orange juice with vitamin c might even do the trick. Vitamin C increases iron absorption and the liquid iron might raise the hemoglobin. Iron pills can cause constipation. Supplements containing mushrooms and astragalus can help increase the white blood count.
Take care. All the best to you.
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Old 05-01-2013, 04:55 PM   #11
PatE
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Re: Can't do Gemzar...sigh...the only one that ever works

Hi,
I had a liver met successfully treated in 2008 with Cyberknife, three treatments, didn't feel a thing. It may have increased my fatigue but I had just finished chemo at the time so hard to tell. The only SE I had, threw up once but I ate a cookie right after treatment. Each scan for about 9 months showed the met getting smaller and smaller until it was gone. I really can't remember the last time the Pet report even mentioned my liver or spine. My spine was treated in 2010 with Cyberknife.

Cyberknife was the best and easiest treatment I've had to date, I highly recommend it! Maybe you could ask your Doc about it or just contact a Cyberknife center (not all radiation centers offer it so be sure to confirm it is Cyberknife). After my colon cancer dx and surgery I felt like i couldn't win this battle. Day by day I did a little more and I am now back to work full time. I hope you will consider checking Cyberknife.

Keeping all my HER2 sisters in my prayers, hang it there and keep searching.

Pat
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Oct 07 - Dx PR+/ER+/HER2
Jan 08 - Double mastectomy
Feb 08 - Pet Scan showed liver met
Mar 08 - Started chemo A/T
Aug 08 - Herceptin
Aug 08 - Cyberknife treatment to liver met
Apr 10 - Bone scan showed met on spine L2
May10 - Cyberknife treatment to spine L2
added Zometa quarterly
Jan 12 - Pet scan show mets in lymph nodes
in rib cage area, one near panaceas. Add Tykerb
Nov 12 - New primary colon cancer, not breast met
Dec 12 - Surgery for colon cancer stage II no node involvement. No chemo. Added Leterzole
Continue weekly Herceptin/Zometa/Letrozole
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Old 05-01-2013, 07:46 PM   #12
Emy
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Location: New York, new york
Posts: 73
Re: Can't do Gemzar...sigh...the only one that ever works

hi Ann...
Sorry to read your post...I have the same fatigue, but force yourself to get up and walk around as much as you can...Don't give into the fatigue...I found that the more I sleep, then I start losing my strength....so force yourself not to give into the fatigue, and continue to eat healthy....keep a watch on your liver enzymes and tumor markers....
Stay strong
Eileen
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Eileen's history her2+, er+,pr-, Pk13 mutation
Feb 2017. Herceptin and perjeta ..still ned
Oct 2015 dendritic cell vaccine university of Pennsylvania..6 weekly injections...boosters every 3 months
July 2015 stopped weekly taxol (2.5 years of weekly taxol) still on herceptin perjeta every 3 weeks..still ned
Jun 2014 liver ablation of 1 liver tumor..now ned
Jun 28, 2013 ca15-3 24, cea 3.8... Pet scan showed 2 liver tumors with intensity of 2.7 and 2.5 (11/13 intensity was 8.0)
Jan 2013 herceptin, perjeta every 3weeks, taxol weekly
Jan 2013 MRI showed 3 liver tumors doubled in size ca-15 is 55 end of month 71, cea 7
Dec 2012. Pet scan showed single liver nodule, having MRI liver on dec18th...MRI liver 3tumors... on herceptin, tykerb , fulvestrant ca-15-3 is 42
Sept 2012 ca-15 went from 85 to 35, pet scan showed decrease
May 2012 herceptin every 3 weeks, 1500 tykerb daily (6pills) and fulvestrant every 3 wks
May 2012 herceptin stopped working ca-15 is 85
Sept 2011 started herceptin every 3 wks and femara daily..mets to liver. Bone and lymph nodes
2011 liver mets...all samples from 2001 and 2010 reviewed...her2 positive, fish 5.4. Er positive, prog neg. Stage 4 breast ca...never was lung cancer
2010 16 weeks of chemotherapy for lung cancer (incorrect). Carboplatin and vinalbine...was actually breast ca mets
2010 misdiagnosed with lung cancer ..2cm tumor removed..lower right lobe removed
2001-2006 tamoxifen
2001. Ductal ca. Rt mastectomy
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Old 05-01-2013, 09:21 PM   #13
ElaineM
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Join Date: May 2006
Posts: 3,142
Wink Re: Can't do Gemzar...sigh...the only one that ever works

I agree about the walking. Even a short walk in the fresh air might help. If you are in bed alot there are bed exercises you can do to keep your bones, muscles and energy at reasonable levels.
You might also want to consider asking your doctor to check your B 12 levels. Low B12 can contribute to fatique. Your doctor can add a test for B12
on to any regular blood test. If your B12 is low your doctor can give you a B12 shot. You can also take B12 supplements or try to eat more foods that have B12 (meats and fortified cereals).
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Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
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