24 replies to this topic

[Melanie]

Hello everyone! Apologies if this has already been discussed, but wondering how many of us have had a previous cancer dx prior to CML and how many have gotten another cancer dx since receiving treatment for CML?

Prior to my CML dx, I had uterine cancer with a hysterectomy as treatment, with no chemo. This was almost 40 years ago. With the exception of basal cell skin cancer, nothing else till CML in 2011. This week, I'm getting a biopsy for determination on malignant breast cancer. Connection, I think we can only speculate.

Are some just more prone to cancer than others? I'm talking outside the known risk factors.

It's enough to make you consider an extra glass of wine or two. 😏

[r06ue1]

Just bad luck, could be environmental; beware of benzene (water) and formaldehyde (home).  

[cmljax]

No cancer Dx for me prior to CML, not even skin cancer.  As you know Melanie, since my CML Dx, I have had 9 biopsy confirmed squamous cell skin cancers and another 35 or so precancerous lesions removed.  Fortunately, the incidence of new lesions has decreased dramatically since I reduced my Tasigna dose from 600 to 450 mg per day, so the medicine certainly played a starring role in this.  Even my onc eventually agreed that Tasigna was at least partially causative.

 

On another note, attached is a Swedish study done on second and third cancers after CML Dx, which definitively shows an increased risk of additional cancers after CML (1.58 times more likely than the general population). The study further concludes that the increased incidence of second cancers is more likely due to the CML than the TKI's being used to treat the CML.  Finally, this study references an MD Anderson study on the same topic which produced entirely different conclusions and specifically identifies the flaws in that study that make it less reliable than the Swedish study.  It's an interesting read.

 

http://onlinelibrary.../bjh.13346/full

[scuba]

No cancer Dx for me prior to CML, not even skin cancer.  As you know Melanie, since my CML Dx, I have had 9 biopsy confirmed squamous cell skin cancers and another 35 or so precancerous lesions removed.  Fortunately, the incidence of new lesions has decreased dramatically since I reduced my Tasigna dose from 600 to 450 mg per day, so the medicine certainly played a starring role in this.  Even my onc eventually agreed that Tasigna was at least partially causative.

 

On another note, attached is a Swedish study done on second and third cancers after CML Dx, which definitively shows an increased risk of additional cancers after CML (1.58 times more likely than the general population). The study further concludes that the increased incidence of second cancers is more likely due to the CML than the TKI's being used to treat the CML.  Finally, this study references an MD Anderson study on the same topic which produced entirely different conclusions and specifically identifies the flaws in that study that make it less reliable than the Swedish study.  It's an interesting read.

 

http://onlinelibrary.../bjh.13346/full

 

Here is the referenced M.D. Anderson paper (2011):

 

https://www.ncbi.nlm...pubmed/21846902

[Trey]

Depending on how one defines cancer types, there are over 100 types of cancers which affect humans or even over 200 different types if distinct subtypes are considered separately.  Although using the term "cancer" to discuss the various diseases is a convenient term it is not always definitive enough.  This is especially true when discussing "curing cancer" (singular) since that is not a very useful phrase.

 

These diseases you have had are very different and generally have very different causes of initiation.  Having CML does not cause other cancer types, although there are legitimate questions about how inhibition of certain tyrosine kinases might affect certain cells, especially fast growing cell types like skin.  But then there are also cancers which are suppressed from forming when certain tyrosine kinases are inhibited. 

 

More to the point about your question, is it personal susceptibility or just statistical unfairness?  No one really knows.

 

But one thing I do know; an extra glass of wine cannot be a bad thing.

[kat73]

Melanie - My fingers are crossed for your biopsy.  Been there.

 

To answer your question:  I had a lumpectomy for a simple DCIS in 2003, followed by the cautionary radiation and 5 yrs tamoxifen.  Nevertheless, had a recurrence (that's the term they ultimately decided on) in 2012, 3 yrs after the CML diagnosis.  So, had another lumpectomy followed by twice-yearly scrutiny (MRI), which turned up a third DCIS in 2014.  Also that year my first ever basal cell carcinomas (2).  A biopsy showed only DCIS again, but following the only protocol they have (which is, to say, a complete load of We're Guessing) they insisted on a mastectomy, which ultimately showed no invasive cancer. There's more I could say on this subject, but I'm pretty sure you don't need to hear it right now!  I hope you get the all-clear instead. 

 

Do I think CML or TKI's had anything to do with all this?  I kind of do, actually.  I think the answer, or cause, lies somewhere in the world of a changed immune system, or skin cell production disruption by TKI's or some other such effect.  I kind of doubt that there's a genetic "the fix is in" going on, as they've studied the living daylights out of the Philadelphia chromosome, and it seems to only be related to CML.  Who knows.  More wine!

[cedespres]

Hi,

I was dx with CML in July of 2014. Started on Gleevec then to Sprycel, and now ,for the last month or so, on to Bosulif. It has been a bit of a bumpy ride. In October of 2016 a lump was found in my mouth/throat that turned out to be ACC. Had the surgery and 6 weeks of radiation. My oncs have said the cancers are not related but I keep wondering. What will come next? So far no mets with the ACC but they found very small nodules in the lungs. I hope they remain very small.

Thanks,

Charles

[thatguy]

Melanie I'm sorry you're dealing with this. I had sent you a pm, have you had any Pcr's since 9/2016, are they at least improving?

[thatguy]

Hi,
I was dx with CML in July of 2014. Started on Gleevec then to Sprycel, and now ,for the last month or so, on to Bosulif. It has been a bit of a bumpy ride. In October of 2016 a lump was found in my mouth/throat that turned out to be ACC. Had the surgery and 6 weeks of radiation. My oncs have said the cancers are not related but I keep wondering. What will come next? So far no mets with the ACC but they found very small nodules in the lungs. I hope they remain very small.
Thanks,
Charles

Very sorry Charles...This is Adenocarcinoma correct? Any prior smoking or drinking history, out of curiosity?

[jjg]

Party pooper alert - the wine, particularly the 2nd, 3rd, 4th.... glasses are not such a good thing for breast cancer :-(

There are some pretty solid studies on this and the subject even has it's own wiki page: https://en.wikipedia...d_Breast_Cancer

Despite how clear the evidence is it never seems to enter popular culture the way one might expect - seems it's easier to buy a pink ribbon than to pass on the wine.

 

Mind you I think you'd be entirely justified to have a little extra while being tested. Hoping you get negative results.

[Melanie]

Thanks everyone for your comments. Interesting articles, especially the Wiki one. It emphasizes no more than one drink a day...hmmm, does that mean I can skip a day or two and then indulge? Maybe, I'll just forget about that article till after I get my results back...that should give me a good week of conscious free enjoyment, believing all the articles that say wine is good for you! Ha, ha!

 

Kat, thanks for sharing your story. I enjoy your comments very much. I may PM you with some questions.  

 

That Guy, thanks for the message and I had forgotten to update my signature with my latest results. That's done now.

 

Charles, I'm so sorry!  Did you have any concerns about the radiation treatment, since that also comes with it's own risk of side effects down the road? Was your CML Dr on board with this treatment?

 

Trey, as you say, no one really knows. I do think when we put such powerful drugs in our bodies that can alter cells, good things can happen, but so can bad.

 

Whether it's from genetics, environment, drugs, or a combination of them all, it's a relief to know we have this forum to speak our thoughts and offer comments. It's a real comfort!

[thatguy]

Hoping for good news Melanie!

[kat73]

Not disputing the numbers (re alcohol and breast cancer risk), but don't forget your Statistics 101 lesson:  when something increases the risk by say, an alarming 50%, you have to know what the initial risk is first.  In other words, it doesn't mean your risk of getting breast cancer is now 50%, it means that if your risk was 3% then it increases to 4.5%.  This is something I learned very early in my journey, from a very patient breast surgeon who was pestered by me continually to "tell me the numbers!!!"  Also remember, the risk is calculated to be different for every individual, and differently at different times in her life, along with changing circumstances.  That's why the much-bandied "One in eight women will face breast cancer in her lifetime" is at once a PR-worthy clarion call and a completely useless statement.

[Melanie]

Got my biopsy results back and they're positive for cancer. Good news, it's early, DCIS, grade 2 and non invasive. My local oncologist is taking the lead on this and actually recommended the same surgeon as my PCP.  Looks like the recommended treatment will be surgery with follow up radiation and drug therapy.  I'll know more next week after my appointments. Due to my issues with cytopenia, there is some concern about what's the best plan for me. 

 

I feel like a cancer magnet...This too will pass and my husband and I can get back to our retirement life. We got things to do and enjoy!

[jjg]

Sorry, that definitely sucks. Good that it's an early catch. Hopefully your counts aren't too much of a problem

[thatguy]

Not to be that cliche guy, but I'll be praying for complete success.

[kat73]

Melanie - So sorry - wish it had been nothing.  BUT.  DCIS is like the CML of breast cancer:  the best kind you could get!  You will, indeed, be able to get back on track afterward and get back to living the high life of retirement.  Other than deciding about the radiation, per those PMs we sent each other, everything about this is probably going to be straightforward and easy.  Annoying, of course.

 

I would love to hear how your medical team responds about the radiation questions.

[Kali]

Hi Melanie,

I am sorry to hear about your diagnosis. I hope all goes very well for you!

I had a tumor 40 years ago but because it was caught early I was cured with surgery. It was disheartening to get cancer again with CML diagnosis.

Not sure what to make of all this. My onc says there is no connection, but I do wonder why some are susceptible to CML and some to more than one cancer in a lifetime.

Anyway, I wish you the best Care and a complete cure.

[Melanie]

Update on my breast cancer. Three weeks ago, I had a unilateral mastectomy with sentinel lymph node removal. Happy to report that pathology came back with all margins and lymph nodes negative for cancer. They got it all and no radiation or chemo needed. Recovery has been good and am almost back to my normal CML life.

My medical team had a good plan going into surgery due to my cytopenia and were able to avoid any complications. They pumped up my neutrophils with a series of neupogen shots days prior, doubled up on my Promacta, then gave me one unit of platelets an hour before surgery. Worked perfectly and I'm healing well. Was hoping the numbers would stay up in the normal range, but they've dropped back down and that's okay too, because a part of me was afraid the CML stem cells would see those high numbers and come charging out to have a party!

It's comforting to know we now have a protocol to use should I ever need surgery again. Happy dance here for being cancer free, except for that pesky CML thing. Thanks for all the best wishes and prayers!

Blessings, Melanie

[kat73]

Excellent news Melanie!!  I sure do know how you feel.  Very glad you didn't need radiation, which keeps all future options open.  Carry on!