Progress Report and Recommendation to Be On Aranesp

pinky104

I'm finally getting around to letting everyone know about the progress I'm making with my UPSC.  I was diagnosed in 2010 with stage IVb and had a reoccurrence this year with surgery in April where I had two bowel resections, one due to cancer which wrapped itself around my ascending colon, and one due to the fact that my intestines had grown into the mesh that was put in me in 2012 for my incisional hernia. I also had my abdominal wall rebuilt with new mesh.  I've been undergoing chemo with Carboplatin and Gemzar one week, Gemzar alone the second week, and the third week off except for labs which started in mid-May.  I skipped one week of the Gemzar recently so I could vacation in Maine.  Last week, I started my fourth round with the Carboplatin and Gemzar combination, and tomorrow, I'm back to having the second week with the Gemzar.  I had a PET/CT scan on 7/21/17 which showed that my mass, which had measured 5 x 6.3 cm., was down to 2.8 x 3.8 cm.  If you figure the area of the masses, it shows that the mass is now about a third of the size it originally was.  On the study I had before surgery on 3/30/17, the SUV max was 12.04, and that was down to a max of 7.54.  I only know the results of the CA-125 done the first week in June because the results on that test from last week's wasn't completed yet when I was there.  My CA-125 in early June was down to 10.5, well within the normal range.  So all the news is good. 

My main problems have been with my other bloodwork.  My first round of chemo was difficult, with labs so low I couldn't have chemo without waiting an extra week for my blood to recover.  After I refused the Neulasta shot, my oncologist's PA reduced my dose of chemo so that my white blood cells wouldn't drop so fast, and she was pleased with the results of that.  My hemoglobin has been running very low since then, as low as 8.4 one week.  Oddly enough, I had a transfusion in 2010 when I was very short of breath at 9.8, but I'm not as short of breath now even though my blood levels are lower.  I was told that my body has adapted to the lower levels.  Last week, my oncologist recommended that I take Aranesp injections and said he'd have to get approval from my insurance before I could have them.  He handed me paperwork to read on them, and after doing that, I'm really leery of getting them.  They seem to have as many possible side effects as Neulasta does, up to and including death.  They even make some types of cancer worse, although uterine cancer doesn't seem to be one of the types affected.  Reading about them online, I saw a comment that I shouldn't take them if it's possible to have a transfusion instead.  I know blood is in really short supply in our area from what I've heard on the news (due to people's vacations and colleges being out of session in the area). I'm not supposed to see the oncologist tomorrow, just the nurses in the chemo area, so I don't know how my refusal of the shots will be handled.  My platelets are also running low  most of the time.  I know transfusions also carry risks (like infections).  I had two after surgery in 2010 and one halfway through chemo treatments with no ill effects.  My oncologist told me that as long as my hemoglobin is kept around 10, the risks of the Aranesp injections are much less than if the hemoglobin is allowed to go above 12. I'm wondering if any of you have been on Aranesp and if you've had any complications from it. 

For those of you debating to take a watch and wait approach in stage I, I'd like to let you know that I had no lymph node involvement back in 2010, and my cancer still spread.  I felt some pain in 2014.  I had a CT scan then, which showed a very small paracolic gutter mass.  My GYN/onc said it was too small to biopsy (he wasn't sure if he could even find it), so he did repeat scans for a whole year, and the thing didn't grow.  He decided that if it didn't grow, it couldn't be cancer, as cancer always grows.  It waited until after February of this year to grow 874% (based upon my CA-125 figures). He told me this was highly unusual.  So for those of you with UPSC,  I recommend fighting it as hard as you can as early as you can.  Being stage I doesn't necessarily save you from its effects.  It doesn't necessarily act like most other cancers do, with the highest stage being the riskiest. People who have had stage 2 UPSC have died while I've lived 7 years with stage 4.  Go figure!  It makes no sense at all.

takingcontrol58

Alternatives to Aransep

Pinky,

You probably know of me on this board as the "metformin" woman.   In addition to metformin, I have been on a regimen of 44 supplements
since my second round of Taxol/Carbo back in Feb 2015. I had a total of 6.

I would highly recommend that you start using a few of the key supplements known to boost the immune system.  They are the
medicinal mushrooms, used for thousands of years in Chinese medicine.

Chemotherapy is a chemical poison that is destroying everything in its path, the cancer cells and our healthy cells, and can cause alot
of damage to our white blood cells as you are experiencing (among other things).  So you have to repenish the nutrients that are being destroyed.

The best known supplement to boost the immune system is called Maitake D fraction.  It is a liquid- the brand I use is from Mushroom Wisdom.
I put 40 drops in a fruit/vegetable smoothie I drink each day (and add some other supplements as well).
Maitake D fractions strongly stimulate the body's natural killer cells, cytoxic T-cells, interleukin-1, interleukin-2 and lymphokines, all of
which are critical to fight cancer.  Tests have shown that using kmaitake D improved the results of conventional cancer treatments even in 
patients with advanced cancer. They are known to dramatically reduce the side effects of chemotherapy, including nausea and vomiting and a fall in 
white blood cells.  My own blood cells never dropped below normal when I got my 6 infusions of chemo, so I never had to consider Neulasta or
other such drugs. I also never experienced nausea or vomiting.

Standard oncologists don't typically recommend supplements but there is so much evidence that some of them are marvels of nature. I'm with you
about having reservations about another chemical drug, Aransep, with new side effects.  That is the problem with cancer treatment- they give you
drugs with one set of side effects, then have other drugs to treat those symptoms.  Personally, i believe you have to help your own body to heal
your cancer.  It sounds like you need to boost your own immune system, as that is the only thing that really fights cancer.

The other medicinal mushrooms I use are Shitake (tablets), Chaga (tablets) and Coriolus (capsules).  Coriolus is considered the strongest antitumor mushroom available.
Shitake contains an anti-cancer compound called lentinan, which helps boost the immune system.  Even the  National Cancer Institute says that complexes
in maitake mushrooms appear to have anti-cancer properties. I would be happy to tell you the brands I use if you are interested.

I don't know how your oncologist will feel about this but don't let her convince you that the supplements will compromise the chemotherapy.  As I 
mentioned, there are many studies that indicate that many supplements make the chemotherapy work better. You have to protect your healthy
body parts as chemo doesn't discriminate and destroys everything in its sight.  I received my chemo at Sloan Kettering- they were very much
against me taking supplements yet here I am almost 3 years later in complete remission, and they gave me 4-6 months to live.

You might want to meet with an integrative oncologist or naturopath who can put you on a full supplement regiment that would be customized for you.

Let me know if you need any additional information. 

Takingcontrol58

 

TeddyandBears_Mom

Pinky, thanks for the update.

Pinky, thanks for the update. It sure sounds like great news that your cancer is responding to the treatments. Crappy that your blood is taking such a hit though. I don't have any information to offer up. Like you, I refused the Neulasta because of the side effects and the fear of what it could do to me. Can't blame you one bit for not wanting to use either one! I hope once you talk to your doctor, they will agree to the transfusion instead.

Great advise for the people with stage 1 high grade cancers. I am one of them. You only get one chance at "cure" and I wanted to do everything the doctors wanted me to do to get there. They call this the sneaky cancer for a reason.

Take care of yourself and please come back and let us know how you are doing. I pray that your blood counts bounce back faster!

Love and Hugs,

Cindi

Lou Ann M

Pinky

i am so glad to hear from you.  I am glad for the good news, yet sad about the low blood work.  I have had a lot of problems with that also.  My counts are finally rebounding slowly.  It just takes time.  Hang in there.

Hugs and prayers, Lou Ann

NoTimeForCancer

Pinky, while I am so sorry to

Pinky, while I am so sorry to hear all you have gone through but you are generous in your sharing and SO glad to hear from you.  Thank you so much for your words.  

pinky104

Thanks, everyone

Thanks, everyone for all your nice comments.  And a special thank you to takingcontrol58 for all the info. on the medicinal mushrooms.  I googled the first product you mentioned and found it on a site called Destination Vitamins.  That might not be where you eot it but it tells me that it is available on the Internet.  You must be spending a small fortune on these products, with all the drops you put in your smoothie.  I rarely have smoothies (just when I'm at Panera), and I wonder how these drops would taste in plain water.  I'm assuming you probably live in the metropolitan NY area since you mention Sloan Kettering.  I live in a small town north of Albany with a population under 1000 people and I wouldn't have a clue where to find the closest integrative oncologist or naturopath.  I'm not fond of driving around Albany with all its rush hour traffic of state workers, but I suspect that if there are any people in this area in those fields, Albany is where they'd be.  Right now, I'm dealing with too many medical appointments, and I just want things to slow down. 

My white blood cell counts have actually been fine since my chemo doses were reduced after my first round.  The platelets and red blood cell counts are still lousy, but I think I'm actually getting used to them.  As far as immunity goes, I already have an immune deficiency disease, hypothyroidism which started off as Grave's Disease back in the 90's and I received a radio-iodine treatment which slowed the thyroid down too much.  I also have a rare type of hemochromatosis, which can cause some types of abdominal cancers.  Like you, I was NED three years after treatment and thought I was doing well.  I had CA-125's in the 6's and 7's back then and was pretty sure I'd "beaten" this cancer.  My CA-125 went up into the 9's in June of last year, but I was told that wasn't anything to worry about.  I did worry, knowing this had never happened before.  It went up into the 14's in Feb. of this year and I was told the same thing.  Wrong! 

I've never had nausea and vomiting with my chemos, but I get Emend prior to treatment as a preventative.  I usually get a little abdominal pain and sometimes a stiff neck and headache.  The first round I had several problems, but since my doses have been reduced, I'm doing much better. I'm scheduled for four more days of chemo over the next six weeks, and I'll have a PET scan in October to see how I'm doing to see if I need any more treatments.  And I'll probably be going through Foundation One for genomic testing at that point to see what else can be done to prevent this from coming back. 

I noticed when I looked at websites where the drug Aranesp is discussed that it shouldn't be given to anyone who is expecting to be cured.  One site said it has a 10% chance of causing a patient's death.  And I also found that one of the drugs I'm on is one that can have an interaction with Aranesp and the combination can cause thrombolytic events.  Definitely not something I'm willing to take!

I'm hoping I won't be one of the people who has to treat this cancer as a chronic disease, but it's definitely better than the alternative.  I'm not letting it get me down too much.  I'm just going with the flow.  Whatever happens, happens.  I just go through all the motions of the appointments and treatments and don't spend a lot of time worrying about what's going to happen to me like I did back in 2010.  Stress definitely causes cancer to grow so there's no reason to get my panties in a bundle.  I'm two months shy of 69, so I've had a good long life.

takingcontrol58

Low red blood cell levels

Pinky,

Low levels of folate, Vitamin B12 and Vitamin B6 can cause low red blood cell levels.  You might have your doctor
run blood tests on these vitamins to determine your levels then you will know best how to supplement if necessary.

 

The B vitamins are key in our bodies and as we age, levels frequently go down.  I take B12 (because metformin can lower) and B6. I
also take B2 (riboflavin).  Oour bodies need to be in balance in order to function properly. It is all about basic biology.  Chemotherapy
destroys the bone marrow, where red and white blood cells are made. If the body isn't able to replace the red blood cells as they die,
the blood counts go down.  This is why supplementation is so important during chemo.   You are replacing all that chemo is destroying.
Chemo can't distinguish the healthy cells from the cancer cells. The supplements protect your healthy cells. And many supplements have
been shown to make chemo work better.

Typical doctors don't usually test for all the necessary vitamins and minerals that are key to making our bodies work. You will usually have to ask for the tests.

Takingcontrol58

 

MAbound

B12

If TakingControl is the metformin lady, I guess I must be the B12 lady because I really think it is beneficial for most of us in our situation to be taking this supplement because of the circumstances we find ourselves in that impacts B12 levels and because it is one of the safer supplememts to take.

You are still under the supervision of a naturopath though right, Taking Control? How often are you tested for the levels of the B vitamins you are taking? I'm asking because there's a difference between B12 and the other B vitamins that are much easier to take too much of. Those should really only be added to one's regimen with some kind of regular monitoring. B12 is a water soluable vitamin and the body eliminates whatever B12 it can't use like it does for Vitamin C, another water soluable vitamin, so it is much safer to take than the other B vitamins. That's rather a good thing since the lab test for B12 level is rather pointless when it doesn't distinguish between the active and inactive forms.

A lot of us need B12 because we have one or more of the following issues that lower our active B12 levels and put us risk for neurological issues, such as neuropathy and dementia, and because it helps our blood componets such as RBC's to recover between chemo treatments.

1. Active cancer
2. Chemotherapy
3. Over age 50 (stomach produces less and less of the acid we need to get B12 from food as we age) This is a gradual process over time so the more you are past 50 the greater the impact this has on active B12 levels and the more you need to take a B12 supplement.
4. Taking Metformin
5. Undergoing surgery or some other trauma
6. Taking antacids ( see #2 above)
7. Vegetarian diet

I am by no means saying that other B vitamin supplements might not be needed, but so many supplements contain doses that are way too high and more than you need or is recommended. Higher than recommended levels can be toxic and actually turn around and cause neurologic issues such as neuropathy. You have to count what you get from foods you eat, since many foods are fortified with B vitamins already, along with any supplements in the total amount you are taking each day. This is especially important with B6 and folate.

The point that has to be stressed every time you read something about supplementation here or elsewhere is to be careful, careful, careful and resist self-prescribing. Supplements, just because they are natural or over the counter are still potent pharmacological agents that you should take with some kind of supervision. Many have impacts on other drugs or treatments you are undergoing that you need to be aware of. Advice on brands that are trustworthy and effective is important, too, because of the lack of oversight on their production and sale. The FDA doesn't have any oversight of herbs and supplements so it's kind of the wild west out there and there are a lot of snake oil salesmen taking advantage.

TakingControl has some really good advice...she's done a lot of homework, but I think we still have to repeat the precautions everytime we share any supplement advice. Treat supplements with the same caution and respect you give to taking any prescribed drugs.

CheeseQueen57

All B vitamins are water soluable

FYI, all B vitamins are water soluable. That doesn't mean you should necessarily take high doses. There really aren't assay to check your vitamin levels easily or inexpensively. Many types of anemia are caused by B vitamin deficiencies. As mentioned previously, it'S best to work with someone knowledgeable cause there can be many interactions with medications. 

pinky104

takingcontrol58 said:

Low red blood cell levels

Pinky,

Low levels of folate, Vitamin B12 and Vitamin B6 can cause low red blood cell levels.  You might have your doctor
run blood tests on these vitamins to determine your levels then you will know best how to supplement if necessary.

 

The B vitamins are key in our bodies and as we age, levels frequently go down.  I take B12 (because metformin can lower) and B6. I
also take B2 (riboflavin).  Oour bodies need to be in balance in order to function properly. It is all about basic biology.  Chemotherapy
destroys the bone marrow, where red and white blood cells are made. If the body isn't able to replace the red blood cells as they die,
the blood counts go down.  This is why supplementation is so important during chemo.   You are replacing all that chemo is destroying.
Chemo can't distinguish the healthy cells from the cancer cells. The supplements protect your healthy cells. And many supplements have
been shown to make chemo work better.

Typical doctors don't usually test for all the necessary vitamins and minerals that are key to making our bodies work. You will usually have to ask for the tests.

Takingcontrol58

 

takingcontrol58

I do already take vitamins B6, B12, and folic acid.  If anything, I'm probably taking too much of them.  My husband and I started taking additional B12 besides what's already in our multivitamin a few months ago after he read about how long-term use of Omeprazole, which we're both on, makes the body need more B12.

MAbound

Your right

Your right that all B vitamins are water soluble, but the difference between them is how much easier it is to take toxic amounts of B6, folate, and niacin when taking them in supplement form, especially on a regular, long term basis.

B12 does not have Upper Tolerable  Intake Levels, whereas B6, Folate, and Niacin do and most of  the supplements out there exceed those levels, sometimes by a lot.

A lot of foods are fortified with B vitamins and that has to be counted along with any supplements taken to avoid surpassing the UTILs on a regular basis.

My main point was to re-emphasize that when you read about taking supplements on this board or elsewhere on the Internet is to not take them lightly, but to proceed with some professional guidance and monitoring. It's a caveat that merits frequent repetition.

MAbound

Sorry

Repeat of above that I deleted

beccabtown

Pinky, thank you so much for

Pinky, thank you so much for this progress report. Although I'm sorry to hear about all you've been through, it still gives me a lift to hear that there is hope of fighting advanced disease.

I'm getting the results of my genomics testing today, so I'll find out if there are any promising treatments for me.

Best wishes to you.

pinky104

beccatown

Haven't been on here for a few days.  Sorry I haven't replied before this.  You're very welcome.  Let us know what your genomics testing recommends that you do.  I will probably be having that done when I finish my treatments next month or whenever.  I got a reduced dose of chemo last visit (almost two weeks ago) because of low platelets, and I have a feeling they'll be even lower this time.  I'm bleeding easily and have a large bruise on my elbow from where I lightly bumped the edge of a doorway.  I had a subconjunctival hemorrhage in my left eye last weekend which gives me the appearance of having a "monster eye."  I'm hoping I can get a blood transfusion this week rather than the injection of Aranesp which the doctor wants me to have.  I never got to see him on my last visit. The nurses did my evaluation last time.  I have two more three week rounds of chemo left for sure, and then I will be evaluated to see if I need more.  It is working.  The tumor was about a third of its original size at the end of July.  I'm getting a little more short of breath, but that's to be expected when my hemoglobin is down into the 8's.   

Pennielane

takingcontrol58 said:

Alternatives to Aransep

Pinky,

You probably know of me on this board as the "metformin" woman.   In addition to metformin, I have been on a regimen of 44 supplements
since my second round of Taxol/Carbo back in Feb 2015. I had a total of 6.

I would highly recommend that you start using a few of the key supplements known to boost the immune system.  They are the
medicinal mushrooms, used for thousands of years in Chinese medicine.

Chemotherapy is a chemical poison that is destroying everything in its path, the cancer cells and our healthy cells, and can cause alot
of damage to our white blood cells as you are experiencing (among other things).  So you have to repenish the nutrients that are being destroyed.

The best known supplement to boost the immune system is called Maitake D fraction.  It is a liquid- the brand I use is from Mushroom Wisdom.
I put 40 drops in a fruit/vegetable smoothie I drink each day (and add some other supplements as well).
Maitake D fractions strongly stimulate the body's natural killer cells, cytoxic T-cells, interleukin-1, interleukin-2 and lymphokines, all of
which are critical to fight cancer.  Tests have shown that using kmaitake D improved the results of conventional cancer treatments even in 
patients with advanced cancer. They are known to dramatically reduce the side effects of chemotherapy, including nausea and vomiting and a fall in 
white blood cells.  My own blood cells never dropped below normal when I got my 6 infusions of chemo, so I never had to consider Neulasta or
other such drugs. I also never experienced nausea or vomiting.

Standard oncologists don't typically recommend supplements but there is so much evidence that some of them are marvels of nature. I'm with you
about having reservations about another chemical drug, Aransep, with new side effects.  That is the problem with cancer treatment- they give you
drugs with one set of side effects, then have other drugs to treat those symptoms.  Personally, i believe you have to help your own body to heal
your cancer.  It sounds like you need to boost your own immune system, as that is the only thing that really fights cancer.

The other medicinal mushrooms I use are Shitake (tablets), Chaga (tablets) and Coriolus (capsules).  Coriolus is considered the strongest antitumor mushroom available.
Shitake contains an anti-cancer compound called lentinan, which helps boost the immune system.  Even the  National Cancer Institute says that complexes
in maitake mushrooms appear to have anti-cancer properties. I would be happy to tell you the brands I use if you are interested.

I don't know how your oncologist will feel about this but don't let her convince you that the supplements will compromise the chemotherapy.  As I 
mentioned, there are many studies that indicate that many supplements make the chemotherapy work better. You have to protect your healthy
body parts as chemo doesn't discriminate and destroys everything in its sight.  I received my chemo at Sloan Kettering- they were very much
against me taking supplements yet here I am almost 3 years later in complete remission, and they gave me 4-6 months to live.

You might want to meet with an integrative oncologist or naturopath who can put you on a full supplement regiment that would be customized for you.

Let me know if you need any additional information. 

Takingcontrol58

 

Takingcontrol58

Hi there, I've been reading your posts and would love to know more about the supplements you mention, as well as any resources you can share where I can learn more. I recently had a recurrence confirmed in my lungs. Since the beginning I have been asking my doctor what I can do nutritionally to support my treatments, but he can't/won't go there. I did see a naturopath when I was first diagnosed, but wasn't impressed with her knowledge, she pretty much offered me green tea capsules and turmeric. I've just started taking progesterone, will have a scan after 8 weeks, but I want to do more...