MYELOMA HELP !!!

TIMBUCKTOOT · New User Joined: 16 Dec 2007 Posts: 1 Location: CO.DURHAM

Can anyone help ? My grandad found out he had Myeloma at the begining of the year, after having Radio therapy for two tumors he seemed to be ok. Three weeks ago he was taken into hospital with chest pain, the day after admission his nose started to bleed and has has been ever since, the doctors are having trouble trying to get his blood to clot. This past week his kidneys arnt able to function properly and he has no energy and just seems to be giving up, has anyone come across anything like before ? Would be really gratefull if any one could help.

ksplat · Posted: Mon Dec 17, 2007 5:18 pm Post subject: MYELOMA HELP !!!

Hello TIMBUCKTOOT ,
I hope you don't mind but I moved your post to the Myeloma thread as I believe you will receive more support & information here as it relates to your Grandad's particular cancer.
In saying that I would like to say how very sorry I am to hear of your Grandad's illness & subsequent hospitalisation. This must be so hard for you & your family. My prayers & thoughts are with you all at this very difficult time.
I must apologise as I am not familiar with this type of cancer, but my hope is in moving your thread you will receive some insight from other more knowledgeable members on this forum.
Thinking of you.
Cheers, Aussie Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

stanky_williams · New User Joined: 02 Jul 2007 Posts: 5

hi---
I am a 28 year old male with multiple myeloma (young I know). about 2 years ago I was diagonossed with a solitary plasmacytoma and was treated with high dose radiation therapy. About 1 year ago my diagnosis was changed to MM and I was treated with DTPACE chemo therapy and collected stem cells for a future stem cell transplant. I am in partial remission and am doing ok, although I am still trying to get over some of the side effects from the treatments.

you might already know all of this, but just in case you don't.

The way I understand it is that hyperviscosity can cause nose bleeding. hyperviscosity (the way I understand it) is when high levels of M protein (one of the main markers of MM) are building up and attaching themselves to platelets (platelets help your blood clot) thus interfering with the platelets ability to clot the blood. I believe that this can also cause sleepiness, bruising, headaches, and blurry vision. Kidney problems seem to be one of the biggest issues with MM (I believe this is becuase the M protein build up too much of the kidneys to process)

I had problems with blood clotting a few times, for several different reasons during different treatments--- usually they would have to give me an infusion of platelets (a bag of gross looking thick yellow liquid that they pumped into my veins)

I have been lucky to avoid kidney problems, but like all MM patients, I have to watch them constantly.

What hospital/ doctor is your grandfather seeing. I have discovered that a lot of hospitals don't really have anyone that really deals specifically with MM. Finding a specialist could be a really big help (I am lucky enought to be able to travel from washington dc to see doctors at the university of Arkansas). Once I starting seeing specialist I really started to gain a lot more hope, and did not feel so lost-- it made a big difference to me to just know that I am in the best place that I could be.

Obviously I am not a doctors, but if his kidneys are having trouble I would guess that his M protein is getting too high, and that most doctors will want to do some type of chemo therapy at maybe eventually a stem cell transplant (some combination of those things is a rather typical MM treatment)

Sorry if you know all of this stuff, I have no idea how familiar you are with all of this. I remember how lost I was in the beginning (and still am sometimes). feel free to email me directly if you would like more details or have any other questions. stanky_williams@hotmail.com

MM does not yet have a cure, but is very treatable, and a lot of people seem to be "cured" for all practical purposes--- not to undermine it-- it can be very nasty. Try to give him hope. I have seen people in the clinic that appear to be hanging on by a thread, and the next time that I see them they are just seeing the doctor for a check up. The cancer and the treatments can really tear a person down physically and mentally---This really can be nasty, but it is also not that uncommon for people to bounce back to feelin well again-- I have been there to some extent a few times. My best adive to you is to do eveything you can to make sure that you are seeing the best doctors that you are able to get to, that really helps me feel like I am at least doing all that I can------ and hold on to hope.------my thoughts go out to you and your grandfather.

Jim

brainman · Posted: Tue Dec 18, 2007 5:18 am Post subject: Re: MYELOMA HELP !!!

TIMBUCKTOOT, several years ago, my ex-father-in-law died of multiple myeloma, several years after first being diagnosed. Unfortunately, your grandfather's condition sounds very much like my ex-FIL shortly before his death. If they do not get his kidneys to function again, I fear that your grandfather is also nearing the end of his life.

Try to spend as much time as you can with him. Help to make whatever time he has left as good as you can.

You and your grandfather are in my thoughts and my prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

heynow · Posted: Tue Dec 18, 2007 8:35 am Post subject: Hope this helps

From what we have only started experiencing with my sister is that it takes the right kind of doctor to help you the most. I see from a google search that you might be able to look at the University of Colorado Cancer Center for assistance. I have read a lot of this being a problem and it sounded like there were ways to handle this.

Here is some info I found specifically on clotting problems:

Hemostasis, is the stopping of bleeding from damaged blood vessels. If you have a "disorder of hemostasis," blood disorder bruising or bleeding problems such as frequent nosebleeds (epistaxis) may occur. Blood clots form in many ways. Things that are necessary to form a blood clot include:

Platelets:

These are tiny cells that are made in the bone marrow. Your blood platelet level can be measured by drawing a complete blood count (CBC). This is done by placing a needle in your vein, and collecting a sample of blood. Normal platelet counts are 150,000-400,000 (although this may vary from laboratory to laboratory).
If your blood platelets are too low from chemotherapy, or your disease, and you are at risk for bleeding problems, your doctor or health care provider may suggest a blood platelet transfusion, if he or she thinks it will improve your health status.
Your may have low blood platelets from other bleeding disorders, such as thrombotic thrombocytopenia purpura (TTP), or idiopathic thrombocytopenic purpura (ITP). Your health care provider will determine the best way to treat your disease, which may not include blood platelet transfusions, but may include steroids (like Prednisone), and other forms of immune therapy.
Blood Clotting Factors:

These are found in your blood, and are mostly made in the liver. The blood clotting factors work with the platelets to form a blood clot. If you have problems with your liver, you may have difficulty forming a blood clot, making you susceptible to bleeding problems.
How Your Blood Will Form A Clot:

In normal individuals, platelets collect at the site of bleeding. Along with another type of blood clotting factor (called von Willebrand's factor), the platelets and the clotting factor will work to form a "plug", or blockage in blood flow, at the site of bleeding.

Then, through a period of minutes to hours, other blood clotting factors will travel to the site of bleeding, where the original "plug" was formed, to make a more permanent blood clot. This is known as a fibrin clot.

There may be many reasons why you are at risk for bleeding problems. Some of the most common reasons that you have bleeding problems include:

That there is trauma or injury to your body.
You may be missing some of the blood clotting factors necessary to stop bleeding.
Since the liver makes nearly all the clotting factors in your blood, except for platelets and von Willebrand's factor, you may not be able to form a blood clot if you have certain types of liver disease.
You may have low blood platelets. This could be due to:
Underproduction of blood platelets - from chemotherapy, cancer in the bone marrow (such as leukemia, lymphoma, or multiple myeloma), viruses, drugs, or certain vitamin deficiencies.
Increased destruction - There may be a problem with your spleen or your immune system, and your body is attacking and destroying the blood platelet cells.
Certain drugs may cause low blood platelets as a side effect, such as Heparin Sodium (a blood thinner, used to treat blood clots in your legs, lungs, or anywhere in your body). Laboratory examinations may be performed to learn more about your bleeding problems, such as nosebleeds or blood disorder bruising.

Source: chemocare.com website

JayDS · Posted: Thu Dec 20, 2007 11:33 pm Post subject: Re: MYELOMA HELP !!!

kidneys can fail for many reasons. It may be that the monoclonal immunoglobulins(Ig) (the M proteins spoken of above) are binding together and forming and amyloid plaque that clogs the kidneys. It can be just a part of those Ig which are amde of 3 protiens, 1 called a heavy chain and 2 called light chain.

It can also be high blood pressure that wrecks kidneys or, conversly, too low a blood pressure that causes them to not function. Kidney malfunction can also give rise to anemia which would explain your granfather's tiredness.

In M.myeloma there is one antibody (an immunoglobulin, abreviated as Ig) that is being produced that has no actual function. Every single copy of this Ig is identical, a clone. It does however cause other plasma cells to become more cloned Ig's. It causes a buildup of plasma cells in the marrow which then causes bone loss. It interfers with production of normal Ig and thus can reduce the immune response making you more susceptible to infections(note: wash your hands a lot if you have MM)

There are several classes of Ig; Ig(G) Ig(K) etc. The most common type involved in MM is Ig(G)

I am being investigated for amyloid plaques or light chain protien deposits in my kidneys.
My kidney function is down to about 30%
I had been told that I had M.myeloma but that's been retracted.
I have monoclonal gammopathy of unknown significance (MGUS)

But, hey, I feel fine. They just keep telling me that I am sick. Cool

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