47 replies to this topic

[Judy2]

Hi GerryL,

Those pictures of the floods were incredible, so much devastation. When it happened it was all over the news in the U.S., I remember it quite clearly. Our 1919 molasses flood was no where near as bad, but it was still a sticky situation (I couldn't resist).

I have been on antiviral medicine now for 4 days and my shingles are much improved, they are beginning to scab over. Five nerves were involved so my poor thigh has been quite a mess. I hope this is not related to Sprycel. I will let you know what the dermatologist and oncologist say. Thanks for you concern....and thanks for keeping me occupied!!!

BTW, I  don't think mid 40s is old. I will be 54 on Feb.22nd. You are just a  kid!!!

Judy

[jrsboo]

From the package insert at BMS, at the end in bold:

6.3 Additional Data From Clinical Trials

The following adverse reactions were reported in patients in the SPRYCEL clinical

studies at a frequency of 1%-<10%, 0.1%-<1%, or <0.1%. These events are

included on the basis of clinical relevance.

Gastrointestinal Disorders: 1%-<10% - mucosal inflammation (including mucositis/

stomatitis), dyspepsia, abdominal distension, constipation, gastritis, colitis (including

neutropenic colitis), oral soft tissue disorder;  0.1%-<1%  - ascites, dysphagia, anal

fissure, upper gastrointestinal ulcer, esophagitis, pancreatitis; <0.1% - protein losing

gastroenteropathy.

General Disorders and Administration Site Conditions: 1%-<10% - asthenia, pain,

chest pain, chills; 0.1%-<1% - malaise, temperature intolerance.

Skin and Subcutaneous Tissue Disorders: 1%-<10% - pruritus, alopecia, acne, dry

skin, hyperhidrosis, urticaria, dermatitis (including eczema); 0.1%-<1% - pigmentation

disorder, skin ulcer, bullous conditions, photosensitivity, nail disorder, acute febrile

neutrophilic dermatosis, panniculitis, palmar-plantar erythrodysesthesia syndrome.

Respiratory, Thoracic, and Mediastinal Disorders: 1%-<10%  - cough, lung

infiltration, pneumonitis, pulmonary hypertension;  0.1%-<1%  - asthma,

bronchospasm; <0.1% - acute respiratory distress syndrome.

Nervous System Disorders: 1%-<10% - neuropathy (including peripheral neuropathy),

dizziness, dysgeusia, somnolence; 0.1%-<1% - amnesia, tremor, syncope; <0.1% -

convulsion, cerebrovascular accident, transient ischemic attack, optic neuritis.

Blood and Lymphatic System Disorders: 1%-<10% - pancytopenia;  <0.1% -

aplasia pure red cell.

Musculoskeletal and Connective Tissue Disorders: 1%-<10% - muscular weakness; 0.1%-<1% - musculoskeletal stiffness, rhabdomyolysis; <0.1% - tendonitis.

Investigations: 1%-<10% - weight increased, weight decreased;  0.1%-<1% -

blood creatine phosphokinase increased.

Infections and Infestations: 1%-<10% - pneumonia (including bacterial, viral, and

fungal), upper respiratory tract infection/inflammation, herpes virus infection,

enterocolitis infection; 0.1%-<1% - sepsis (including fatal outcomes).

[Judy2]

Hi Caroline,

That's what I was afraid of. I am printing the info you sent me out and will take it to my doctors. Do  you think that means I will continue to get it as long as I stay on Sprycel? My step-brother is a dermatologist and he says it can be dangerous if it disseminates over your body. It did involve 5 nerves with me so it is quite scary. I think you said you were on antiviral medicine for one year. Is that correct? How can I possibly stay on a medicine that is giving me herpes?

Judy

[scuba]

Hi Judy -

Try adding 2,000 mg (2 grams) of Lysine to your diet for a few days until the Shingles clears. Lysine is extremely effective against viral sores (cold sores, etc.). Stay away from foods high in Arginine (almonds). High Arginine encourages the Herpes virus. Lysine suppresses it.

Sprycel is not giving you Herpes. Kissing someone strange will give you Herpes.

[Judy2]

Hi Scuba,

Thanks for the info. I have herpes zoster, not herpes simplex and since the last strange person I kissed kissed me on my lips, not my thigh, I don't think I can blame him...and believe me when I tell you no one would want to get near my thigh now, never mind kiss me on it.

Judy

P.S. My doc took a picture of my thigh, I could get a hold of it and post it but I don't want to gross everyone out.

[Pin]

Ohhh - this makes more sense. I think Herpes Zoster is shingles, which can come back (sometimes more than once) if your immune system is suppressed. I'm so sorry Judy, I hope it clears up soon.

[scuba]

Lysine and Shingles

shingles is a herpes virus that is caused by a reactivation of varicell-zoster virus, an infection that starts out as chicken pox. Herpes zoster is closely related to herpes simplex and Lysine takes a similar role in treating the affects of shingles. Though most physicians recommend Lysine to shingles sufferers, it is typically combined with a prescription of antiviral medication such as acyclovir or valcyclovir.

Lysine to Treat Shingles

1000 mg â€" Lysine three times per day during a shingles flare-up. Reduce lysine intake to 500 mg three times per day for one week after healing.

[LivingWellWithCML]

I can't believe the 20mg dose isn't cheaper.  Ouch!  Is that how prescription medications work in general?  I assume it's because the cost of manufactoring is roughly the same regardless of the dose...

[scuba]

Not cost of manufacturing ... cost of scientific development. All of those Ph.D's working in chemistry labs cost a bunch whether its 100mg or 1 mg. And then there is the cost of failed chemistry - all those drugs that never see the Dr.'s prescription pad, but still cost a bunch of money to create.

At the end of the day we're paying (or society is paying) for a solution to a problem, and our solution is not "sold by weight".

[CallMeLucky]

I find it very interesting that this topic of a herpes virus continues to come up in the CML circle.  In the year preceding my diagnosis I had a terrible unexplained illness.  I had extreme nerve pain throughout my body, always felt like a stinging sun burn but it would move all over the body, no visible rash, just a lot of pain.  At first they thought it was shingles but after a while it was clear that it was not.  Many tests and scans later the only thing they could come up with was that I had Epstein Barr virus, which is a related virus (same family).  They said it would eventually burn out after a few months and it did, I felt better for a while and then was diagnosed with CML.  While I have no way to know for sure, if I had to bet on what was the primary cause for my CML I would bet it was the Epstein Barr.  Certainly that is not the only factor, millions of people get Epstein Barr and do not get CML, but I know my body was under extreme stress from that illness and I have to wonder if it played a role.

Hope you feel better soon, most of the time, it seems the virus burns itself out, but not before taking a toll.......

[Judy2]

Thank you everyone,

I am on Valtrex and the shingles/herpes are  beginning to scab over. I feel much better but my poor thigh looks like a mess. My skin under my left arm now feels very sensitive, similar to how my thigh felt before I could see anything but I think the Valtrex will hold off another outbreak.

Scuba, what did  you mean when you said the topic of herpes continues to come up in CML circles? Is this a  common thing to get with CML? I did have herpes one other time, when I was a teenager. I also had chicken pox when I was 2  months old. Scuba, I too had EBV but I had that when I was around 16, many years ago. It is interesting that you are connecting EBV to CML.Many years ago I remember hearing of a connection between leukemia and mono.

Thanks everyone for your support, I truly appreciate it.

Judy

[Judy2]

Hi Billie Billie Billie,

You do help me by being supportive, you really do. I can't really rest right now as my brothers and I have to clean out my mother and step-father's condo. We are selling it as my mom passed 4 years ago and my step-father passed last Feb. It is very sad. My mother put so much time and effort into decorating the condo, it is beautiful and now my brother's and I are dismantling it. While we were cleaning it out yesterday I found some items from my biological fathers death, he passed in 1969. It truly was a hard day but interestingly I wasn't as sad as I think I ordinarily would have been because I have so much on my mind that I can't focus on any one thing. I start to get sad over my mom or step-father and than I think of my CML or start to worry over  my CML and than think of my Wegener's. My Wegener's is pretty much under control, though. I might have had a flare up, I'm not sure, but I will be seeing the doctor who treats that on Wednesday and he will tell me what is what.

Do you live in a two family house, with your sister-in-law in Florida? You have to get home, you are doing too much. Billie, up  until this past year I too was a neat freak. No one was allowed  to wear shoes in my house, everything was always immaculate but this last year I have let a lot of things go. I think we need to keep our priorities in order, we have to take care of our health first. Do not overdue in Florida.

I was going to send you a private email yesterday but I got diverted.  It will be coming soon.

Hugs,

Judy Judy Judy

[scuba]

Hi Judy,

"Scuba, what did  you mean when you said the topic of herpes continues to come up in CML circles? Is this a  common thing to get with CML? I did have herpes one other time, when I was a teenager. I also had chicken pox when I was 2  months old. Scuba, I too had EBV but I had that when I was around 16, many years ago. It is interesting that you are connecting EBV to CML.Many years ago I remember hearing of a connection between leukemia and mono."

I believe Gary (callmelucky) wrote that to you, not me.

You should definitely add 3 grams Lysine per day to enhance the Valtrex. Lysine alone has proven to fight Herpes very effectively (High Lysine in the blood causes Herpes virus to stop replicating). Equally important is to stop eating food with Arginine until after the outbreak has concluded. Do this when you sense an outbreak (red tingling on the skin) and you won't have another Herpes outbreak. Both Lysine and Arginie are amino acids natural to the body. By elevating Lysine over Arginine in a dose dependent manner, Herpes can't grow - and then your immune system (Lymphocytes) gets the upper hand.

http://herpes-coldso...for-herpes.html

[LivingWellWithCML]

Fair enough, and it makes sense at the end of the day.  Ultimately, the driver for a lower dose is the desire to minimize the amount of toxicity flowing through one's system in order to keep CML at bay.  Definitely a goal I'd like to reach one of these days...

[scuba]

Dan - You touch on a very important point (see my other discussion thread regarding 20mg Sprycel) - dose.

Historically - drug trials focus on maximum effectiveness/ toxicity. They postulate, what is the best dose (usually the highest) that gives the best response before toxicity limits application. For Sprycel - that dose is 100mg. However, dose as high as 140mg have been prescribed as well as my dose of 20mg. In each case, Oncologists are balancing response with toxicity in individual cases.

What we are finding is that, in the case of Sprycel (M.D. Anderson research), effectiveness can be achieved on a much lower dose than normally recommended and alleviate the problems of pleural effusion and other toxic responses. Also - I was told that getting a faster response is not necessarily desirable weighed against drug tolerance as getting a "deeper" response. What Dr. Cortes wants to see is that my response as measured by PCR keeps getting deeper and although my response rate is slower than I would have liked, he is happy with it.

Sprycel, in particular, is not strictly a "dose dependent" type drug. CML response to Sprycel is an equilibrium method of action. As long as there is enough drug to trigger the decline in CML, then more is not necessarily better. More is just more. Dr. Cortes wants to find what is sufficient to cause a deep response and then hold the level there. In return, he finds his patients have a much better quality of life (especially his older patients). He doesn't just follow the NCCN guidelines. He writes the guidelines then breaks them. I am a recipient of what he discovers.

I asked him if I can go to 40 mg. to push my response quicker. He told me no. He said I have a good balance and as long as the response keeps continuing, then I am on a good dose. We're all just lab rats when you think about it. Try this - try that and see what works. The chemistry of the TKI's is well understood - the interactions in the body not so much. So less is better in his mind if it works.

One additional point - response rate is important at the beginning. Dr. Cortes' team wants to see quick cytogenetic response as determined from bone marrow. They feel it is prognostic regarding disease control to see if Ph+ chromosome (FISH tests) decreases quickly in response to a TKI. PCR not so much.

Also - I am somewhat an anomaly regarding dose. It is possible that the Curcumin I take is enabling me to get good response on low dose Sprycel. Dr. Cortes is seeking funding to do a trial on this (my personal trial is not scientific - just anecdotal). He wants to learn if Curcumin + Sprycel lowers the equilibrium dose for Sprycel necessary to get good response. I told him, I was not going to stop Curcumin to see if I lose response at 20mg. Sprycel. Why mess with what's working ...

[Judy2]

Hi Scuba,

Thanks for the  info., sorry I confused you with Gary, these days I can barely keep myself straight never mind other people. I followed the link you provided but unless I am missing something I believe that ifo. refers to the herpes simplex virus (cold sores, genital herpes) where as I have herpes zoster, shingles is another name for it. I saw my dermatologist today and he did confirm it as herpes zoster and not folliculitis. He feels I got it because Sprycel suppressed my immune system and reactivated the virus. Everyone who has had chicken pox has this virus lying dormant in their system for life and in some people this virus can be reactivated. There is a vacine for herpes zoster now but you  have to be 60 years old or older to get it (the one thing I am too young for). Anyway, what I don't understand is Bristol Myers lists herpes virus as a potential adverse reaction to Sprycel. Does this mean that for some reason Sprycel can specifically activate this virus,as opposed to others and does this mean it will keep happening to me once I stop my antiviral medicine? This is a question I will be asking my onc when I see him next week but does anyone have any ideas about this?

Gary,

What did you mean when you said the topic of herpes continues to come up in CML circles? Is this a common virus to get with CML or from our TKI's or did you mean that you think herpes triggers CML?

Thanks everyone,

Judy

[CallMeLucky]

Hi Judy,

I was talking about anecdotal posts I've read where people who have CML talk about having one of these types of viruses before being diagnosed.  In my case I have often felt it was the Epstein Barr virus that played a role in my getting CML.  Clearly it was not the only factor and it may just be a function of these viruses are very common so of course many people with CML have had them before diagnosis.  There is likely no link, just something I have stuck in my head based on the events that led up to my diagnosis and the difficult bout I had with Epstein Barr in the year preceding my diagnosis.

[Judy2]

Hi Gary

Thanks, now I understand what you were saying. I saw my nephrologist today and I most likely will be trying to stop my treatment for my Wegener's for awhile. Between that treatment and Sprycel my immune system is likely too depressed and that was the cause of my shingles. It's exhausting trying to juggle both these illnesses.

Judy

[pamsouth]

Hi Judy 2 and all.

I have been, that is most days, following the post as time allows, have been busy with some other things too.

I am learning a lot from all of you.

I am still waiting on my insurance to pay for my doctor visit 11/09/2011to Indiana University.  IND UNIV refiled with the correct codes, so insurance would pay, but it got kicked out as a duplicate, even though the correct codes were on it.  So I called Blue Cross and they said they will  send it back to be reprocessed, will take another 30 days.  The date of service was November 9, 2011 and the IND UNIV billing still now paid, even though I was told verbally it would be.  I think it will be paid eventually just have to jump thru some more hoops and only after another call from me, or it falls thru the cracks, nobody else paying attention.

So far just taking my Gleevec and feeling pretty good, I just get a little tired these days.  Had some company over yesterday and a bible study, so slept in this morning, seems to be the way it goes.  if I have a few, even small activities one day, the next day I sleep to much.  Still deal with the chronic back pain, but I am used to it and I get weekly massages, they are wonderful, and I deep breath.  Actually I have signed up for 5 intro to massage classes, I am hoping I can make the classes.  I took 4 class in Jan and missed one due to a cold, and I did not get to make up the class. 

Judy 2, I am sorry you have to deal with two different illness, which make it difficult to treat both of them with interacting drugs. 

Judy 2 do you think you will stay on the Sprycel or go to a trial drug?

I was reading, I think it was from scuba not sure.  about this clinical  trial HDLA2 shot, that is suppose to make the T Cells come out and eat the Leukemia cells.  That would be very........ interesting to see how that turns how.

As always, in my thought and prayers, In HIS Mercy, PamSouth