19 replies to this topic

[ritan/]

so, when i was about 19 i was diagnosed with Raynaud's disease. (my fingers and feet get cold, often turning white, very easily, they stay cold, and if i'm not careful they turn bright red when they warm up and feel pins and needles--it's bizarre, but i've been dealing with it for more than 20 years without issue). suddenly leukemia and or gleevec seem to be making it worse. i am certain i found an article discussing that either leukemia or gleevec has this side effect, but now i can't find the article anywhere... duh, talk about fog... i hate that.

does anyone have any articles about this? or have seen any discussion about it? i'm getting a bit worried, because it's getting bad enough that i'm afraid i'm going to need treatment, but the treatment they used before they can't use--they quit when i was 20 because i have extremely low blood pressure, and at the time the typical treatments all lowered blood pressure. i know there are now some different treatments, but i'm worried about drug interactions--of course. anyway... anyone know anything about this?

[Marnie]

Hi, Castle . .

I have a couple of fingers that will go completely white and lose all feeling, and are deathly cold.  They look dead.  Definitely hurts when the circulation comes back, and it takes awhile for that to happen.  I didn't have this problem before cml, but have had it occur a number times on motorcycle rides since my diagnosis.  I try to be pretty careful to be aware of when I start to lose feeling in my fingers, and then I stop and flex and rub them until they start looking normal and feeling normal again.  Very weird.

[ritan/]

that sounds exactly like Raynaud's. exactly. i have been having significant problems with it since winter set in. i end up taking about 3 baths a day just to stay warm. it does help a lot, but flexing and rubbing used to work before the CML, but not so much now.

[felursus]

I agree - it does sound like Raynaud's syndrome.  I understand there's an autoimmune component to the disease.  My oldest friend has the problem, and we gave her some mittens my husband found that have a kind of thin, fleece glove lining inside.  She thought them wonderful.  They also make them as gloves.  Then there are handwarmers that they make for skiiers.  I gave my friend a whole box of them (they are single-use) that I found in Costco.  You can put them in boots as well.  BTW, try Uggs for your feet in the winter.  If your hand/fingers turn white, do NOT put them in warm water - only in tepid water at first. 

Karen (I'm a PT)

[pamsouth]

I am glad that I ran across this post.  I found it very interesting that others with CML have the same problem.

I will be 64 Jan 1 and back around 1992, can't remember exact year, when I went to the Dr. I asked her about a couple of my finger that would chill and turn white, hard to get the blood flow back.  The doctor mention the Raynaud's and I thought maybe that was it.  But then a few years a go my husband and I went to some senior seminar on arthritis.  For some reason I mention my finger going white and soaking them in warm water for a long time.  His answer startled me he said "that is a sign of an immune disease".  He could not have known that I had CML.  I alway thought it was bad blood flow, wrong again.  I found an article, can't remember where, wish I had saved it.  Actually my blood flow is good to the fingers but when the extremities get chilled they turn white because the blood actually jell's and it takes time for them to thaw. I don't have much trouble in the summer, mostly winter.  If we go to a restaurant and I am holding a cold class I sometimes forget to pick it up with a napkin or wear my gloves.  I will go to the rest room and soak them in warm water, don't use hot, or put them under the blower.  It sometimes takes several minutes.  I think it is the SML that cause it and not Raynaud's, at least for me.  Oh, it is fingers on both hands. See a common denominator we CML patients have.

[jrsboo]

Holy Cr@p!  I have been having that happen for years, although it has gotten much worse in the past year since being on TKI's.  I will discuss this with PCP, I have a visit schedule this Thursday.  Mine is mostly my toes.  A quick perusal of the internet tells me there is not really a huge danger, that once again it is a rare condition and can be brought about by stress.  The articles warn that you should take yourself out of stressful situations.  ............hmmmm, guess that means I have to figure out how to NOT have leukemia anymore......

Caroline

[hannibellemo]

Please share, Caroline, when you figure it out! 

Pat

[valiantchong]

I tried to drink 500 ml beet root juice daily for a month, it helped, dont know if it will work for you guys....

[ritan/]

yes, isn't that helpful information? i love comments like that that actually add further stress to your life!

[cllgal]

Hi. I have cll//sll currently being treated with benamustine + rituxan.  My daughter was dx'd with raynauds at age 12 now she's 36. My niece now 40 was just dx'd with it as well.  My mother in law had I issues with her hands & feet for years but never told of this. It can run on families & sometimes is an indication of future rheumatoid arthritis. Daughter &; niece both suffer joint pain but thus far no dx of arthritis do we're hopeful. They both also suffer greatly from migraines (brought on by stress) &; it does seem some winters the raynauds is worse than others in spite of less severe cold spells. So maybe the stress is causing it to be worse at times

She was also dx'd with heredity  angio endema  which is over the top reactions to allergies. Carries an epi pen. My husbands niece (now 40) was just dx'd with raynauds & is now being tested for the angio endema as well. Both girls are deathly allergic to iodine dye. No CT's for them with contrast. Their grandmother had issues with hands & feet as well so it appears it all can run in the family.

But because you have leukemia or lymphoma you need to be aware of any changes in you body & bring them to your doctor(s) attention. We can't assume everything is cancer related but need to consider any medications that might be required & how those meds can affect our body especially with our blood work #'s. I don't want readings to look off  & it just be the meds .

I also know its important to keep those fingers & toes warm. Especially with treatment where pheripial neuropathy comes with the territory.

I for one certainly hope the raynauds is not a precursor to cancer. I had several autoimuine issues but was told they were separate issues from my cll/sll not a sign of things to come. I worry so much about my daughter with all she seems to have inherited from her dads side of family without worrying she's inherited cancer from me. (I'm one of 2 cousins with cancer out of over 30. The other just dx'd with throat cancer--smoker who knows if it is cause not going to lay blame hard enough to deal with don't need guilt piled on. I never smoked yet here I am)

Sorry got carried away. Point of post take care of those digets!  And take care of you

Relieve stress to help?  If you figure it out please tell me!!!

[ritan/]

i doubt that auto-immune disorders are actually pre-cursors to leukemia, however, i can see a possible link. auto-immune disorders are a demonstration that one's immune system isn't working properly, doesn't recognize what it should attack. as such, i can see how this would perhaps lead to WHEN a mutation pops up, that the immune system wouldn't realize it should attack that. the immune system is doing double duty, attacking stuff that it doesn't need to.

[ritan/]

since beet juice lowers blood pressure, i couldn't try it. i already have too low of BP to begin with.

[Marnie]

Since beet juice tastes awful, I couldn't try it!!

I spent many hours sitting at the kitchen table staring at the beets on my plate as a child.  Even then, I was more stubborn than my mother.  . .I outwaited the beets (and the dog wouldn't eat them either, when I tried slipping them under the table).

[Judy2]

Hmmm, interesting. I have an autoimmune disease, Wegeners, and was dx with that and CML basically at the same time, 3 months apart. I also have idiopathic urticaria and angioedema. I do not have Raynauds but I do swell from the cold, however last year about 4 months before I was dx with CML I was outside, didn't think it was that cold and so I didn't wear gloves. Within about 5 minutes a couple of fingers in each hand, from the knuckle to the tips went white and numb. That had never happened to me before. I wonder if the majority of people who have CML also have other autoimmune diseases  As castlefibers said, autoimmune disorders demonstrate that our immune system isn't working well and so when a mutation pops up our immune system gets mixed up. Does this mean we can expect more autoimmune conditions in the future? I hope not!!! Maybe I should start a new discussiion, maybe take a poll and ask who was another, or more than one autoimmune disease in addition to CML. Maybe we can learn something, or maybe not,

Judy

[ritan/]

that would be interesting!

[pamsouth]

http://www.nhlbi.nih...topics/raynaud/

The above web link is one of many on Raynaud's disease.  Hope it comes up OK. If not you can google it.

I have been having this problem of chilled fingers since the early 1990's and my doctor mentioned Raynaud's., she did not run any test.

I was not diagnosed with cml until 2005.  However as I mentioned before I went to a Senior Class on Arthritis, after my DX of CML.  When it was  question / answer time, "I asked about the white chilled fingers", and the Doctor mentioned that was a sign of an autoimmune disease, I don't know how he could have known that I had CML which is an autoimmune disease, but then again I am sure there are many other autoimmune disease, so I am not sure the chilled fingers are connected to CML.

Then sometime ago I read an article about chilled fingers and toes and it had nothing to do with the blood flow to the fingers like Raynaulds, but was caused from an autoimmune disease that actually chills the blood like Jello and has to be slowly thawed in tepid water, warm not hot, and slowly thawed. Having said the chilled fingers  have been an early sign of CML, I don't know?  Is it bad blood flow or chilled blood, I don't know? 

I remember (2005 & 2006) when I flew to MD ANDERSON Cancer Center, Houston Tx, the doctor said that CML had at least been working on me, for several years.  That was very interesting when he said that because when I ask other doctors when I got CML, they would say oh maybe a few months or a year before Diagnoses, but I know that is false.  My primary doctor keep saying we caught it early, but I truly believe that is false, she just does not want to admit she missed it!  After I was Diagnosed in July of 2005.  I decided to go back to my primary doctor and ask for the previous CBC before I was diagnosed, which was three years earlier in 2002.  My white cells were in normal range, but they were never very high when diagnosed.  CBC 2002 my platelets were slightly high at 579 . BAnd Neutrophil low at 1 and Basophil high at 4.  Funny I remember that CBC in 2002 because the doctor was upset about my cholesterol being 222 and my triglycerides being 242, but never said a word about the Platelets, Band Neutrophil or Basophils being off.  I trusted her completely!!  I went to this same primary doctor every year (since 2000 and presently) for an annual check up, she never ran another CBC for 3 years which was July 2005 when my platelets were at a Million and two weeks later 2 million and my neutrophil , eosinophil, basophil and whatever else was off, she was only worried about the Platelets.  Later I learned from the cancer doctors that even though my white cells were in normal range or slightly high count when, your granulytes are off, such as your eneutrophils and basophil's etc, that means that certain white cells are abnormal even if they are in normal range.  Strange the primary doctor never mentioned that in 2002 or did a follow up CBC. Perhaps she didn't do another CBC because the Insurance only allowed a CBC every 3 years unless there is a reason, but CBC don't cost that much and the 2003 report did kick out high and lows. 

The lesson I learned here is make sure you get a copy of your labs.

I remember when mom had her stroke in 2002 that landed her in the hospital for 6 weeks.  I had just taken her to the doctor 2 weeks prior and had her labs.  I did a follow up call a week later and they assured me her labs were good.  Well when she had her stroke there was no way her labs could have been Ok, as her electrolytes were off the chart.  I was so busy helping to take care and look after her in the hospital I didn't think at the time to go get those reports.

MAKE SURE YOU GET A COPY OF YOUR LABS!!  MANY TIME DOCTORS ARE SO BUSY THEY MISS THINGS OR YOU DON'T HAVE TIME TO THINK ABOUT IT OR ASK QUESTIONS!!

[felursus]

I was never a fan of beets as a child, but I've come to appreciate beet juice.  If you've got a juicer mix it with apple juice - and I like a little fresh ginger.

BTW, I've been noticing how many of you CML sufferers have Raynaud's.  Wonder if any researcher has noticed it.

Karen (from the AML board)

[Sjimenez29]

My Mother In Law has Lupus and was recently diagnosed with CML, I do think somehow autoimmnune diseases playa factor into developing CML.

[pamsouth]

Sjimenez29,  I would agree with you.  But it would take an expert to figure out why certain people get certain autoimmune disease.

I did a copy and paste on this web site and also part of the text.

http://www.nlm.nih.g...nediseases.html

Your body's immune system protects you from disease and infection. But if you have an autoimmune disease, your immune system attacks healthy cells in your body by mistake. Autoimmune diseases can affect many parts of the body. These diseases tend to run in families. Women - particularly African-American, Hispanic-American, and Native-American women - have a higher risk for some autoimmune diseases.

There are more than 80 types of autoimmune diseases, and some have similar symptoms. This makes it hard for your health care provider to know if you really have one of these diseases, and if so, which one. Getting diagnosed can be frustrating and stressful. In many people, the first symptoms are being tired, muscle aches and low fever.

The diseases may also have flare-ups, when they get worse, and remissions, when they all but disappear. The diseases do not usually go away, but symptoms can be treated.

PamSouth

[pamsouth]

Syimenez29,  Here is another good sight that even list a number of autoimmune disease and there definition.  

http://www.niams.nih...une/default.asp

PamSouth