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*

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

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

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.

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

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

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

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

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..

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.

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

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

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).