10 replies to this topic

[The98yanks]

Hi everyone, hopefully someone can help me understand my situation. I am the main caregiver and support provider for my friend who was diagnosed with CML in November 2012. She went through a round a chemo and oral treatment and the cancer "got worse". She doesn't say much to me because she doesn't want me to worry and isn't ready to talk about everything openly yet. I try not to push her but I would like some answers if possible.

While she was recovering she went to the gym and over did things. She ended up passing out and was hospitalized overnight. I can't remember if it was announced prior to or after this episode that the sickness had worsened, but I know that she was scheduled to have a second wave of chemo treatment. This time the doctor instructed that she stay at a facility for 2 weeks under supervision. The chemo had "complications" and she now needs a bone marrow transplant.

That's the background. Now for my confusion. I have read all the positive information about CML, the new oral treatments since 2001. Lots of positive things. It seems like this can be treated well and long lives can be lived. Great news! With that said, here are my questions. Keep in mind I don't know what stage she is currently in or which stage she was diagnosed in, but my understanding is that most are diagnosed in the chronic stage.

If the oral treatments are so effective, why would she enter chemo so quickly into the diagnosis? Chemo was about 3 months after diagnosis.

What effects would overdoing it at the gym have on her health? How bad? :-/

During her second round of chemo there were "complications". I don't know what they are, but now she is scheduled to have a bone marrow transplant. A donor has been found. What could have happened to go from chemo to a transplant?

How much different is the prognosis for a transplant compared to the success stories of an orally treated CML prognosis?

Thanks for your help!!

[CMLSurvivor]

I does sound a bit odd. Are you sure she has CML and not some other Leukemia. Typically with CML, they start you on medication (Gleevec, Spyrcel, Tasina) and if you exhaust those, then you move to a bone marrow transplant. But, if she is in the Advanced stage of CML, they do tend to treat it differently. It would be good to find out what stage she is in and you or her ask lots of questions of the doctors. Good luck, I hope all goes well.

[CallMeLucky]

You seem to be in a strange situation, you are the caregiver, but you know very little about the patient's illness, which makes it difficult for you understand what is going on.  You need to have a conversation with your partner and figure out what the deal is.  If this person sees you as their caregiver and support person then they need to talk to you about what is going on.  They may not feel like talking about their emotional feelings, but things related to diagnosis, test results etc, should not be withheld if you are going to be there to support her.  If she is unwilling to share this information with you then I would suggest you may want to consider how to protect yourself because you are in a situation where you are bound to have your feelings hurt.  Hopefully by sitting her down to talk to her and explaining that you want to help and in order to help you need to know what is going on, she will understand and share the relevant information. 

The first thing you need to know is what phase she was diagnosed in.  Next you need to understand what kind of treatment she has undergone.  Chemo is a loose term, some people consider TKI drug "chemo".  I would expect someone who is taking a TKI drug to be capable of going to the gym and if blood counts were down, perhaps a bit anemic, I could certainly understand the passing out.  On the other hand I think it would be somewhat odd for someone who is undergoing IV Chemo to head off to the gym one day, perhaps she was feeling well that day and wanted to get out, but in general you would expect someone on chemo to be quite tired and not feeling much like working out. Everyone is different so who knows, but I am not surprised that someone in this state would pass out.  It is not clear what the "complications" of chemo would be so again this is something you would want to better understand.

You obviously care for this person and want to help, make sure you are on the same page with them and then get the details behind what is going on.  Otherwise you are just going to be confused and frustrated.

[The98yanks]

Thank you so much for taking the time to reply. I certainly am confused and frustrated. I'm the only person that knows her CML diagnosis, she hardly tells anyone else she is sick. Whenever I ask about the situation she gets frustrated, overwhelmed and doesn't want to reveal information. I understand it is about her so I don't press her with the questions.  I'm not even sure what she considers "chemo" I know she would go in for treatments a few months ago. She would stay for an afternoon and go home and still be active. Often times go to work afterwards. That could have been TKI but I'm not sure. She does have anemia, but for months she was active and working. Then she tells me that she needed "chemo" again because the CML had worsened. That that goal of this next treatment was to get the disease back to a managable state and then take it from there.  My interpretation is that her night at the gym worsened the CML from a chronic stage to an advanced stage. Would that be possible? She has not said anything about that. Not even which stage she was diagnosed in or is currently in. She says she needs me, but not knowing and understanding the situation is very frustrating for me and I wasn't sure if I was being unreasonable. I've never experienced anything like this and I didn't want to do anything to stress her.

[The98yanks]

She is 24, if that changes anything. She says she has CML and i have no reason to not believe her. If you read my comment to CallMeLucky's comment it explains more. I was just hoping to gather some information from the community so that I could be more knowledgable, less confused, and less frustrated without stressing her with my questions as she is in a fragile state right now.  I have no idea what my expectations should be. After seeing how effective the TKIs have become I just don't understand why she has moved on to a bone marrow transplant. I have no idea what the prognosis could be, but looking up what information I could find it shows a scary prognosis. I just don't want to get blindsided. I will certainly hope for the best but I should plan for the worst. I just need to know what the worst is.

[CallMeLucky]

Again, this is very challenging without the details.  There is a part of me that finds some of this a bit suspicious.  Please don't take that the wrong way, I am not saying she is being untruthful with you, it is just odd in some ways the things you have mentioned.  You know this person better than I do so you will have to trust your instincts on what is going on.

Here's my guess as to what is going on based on the information you have provided, but it is just a guess because a lot of this does not add up with the limited information.

If she is going for actual chemo (i.e. would go for an afternoon of treatment) then she is in an advanced stage, perhaps even Blast crisis.  TKI treatment is a pill you take orally each day, there is no need to be at hospital for it, you take your pill each day and go to doctor for blood work and check up.  So if she is going for chemo treatment, then she is in an advanced stage because they don't do chemo for CML chronic phase.  You mentioned something about them wanting to get it back under control and then seeing where to go from there, perhaps bone marrow transplant.  That would be the protocol for someone in an advanced stage.  If she is in advanced phase they usually use the TKI drug to try to get it back under control and see how it goes, with the idea that a BMT is probably needed but not always.  I would be surprised if they did chemo at advanced stage without giving TKI time to work.  If she is blast crisis, then this is very serious and it wouldn't make sense that she is doing chemo and going home and waiting to see what happens.  Blast crisis is handled like acute leukemia and things move very quickly so you can see why I am confused.  If she is blast crisis they would do chemo to get under control and proceed to BMT

Here are some things to consider

1) She does not have CML, but may have some other type of leukemia and has not been clear, perhaps atypical CML or something like that.

2) She has CML but is not being treated properly (i.e. she is not worlking with a good doctor)

3) She is not being truthful about everything

It is very hard to say given what you know at this point.  I don't want to put it in your head that she is lying, I don't think there are many people out there who would lie about such a thing, but her information is a bit suspect given the things you have described and how CML would typically be treated.  On the other hand not all cases are the same and there could be mitigating circumstances that make this case play out differently.  Once again you are back to the issue of unless she shares info with you, there is not much you can do to help her.  So again I suggest you try to find out what is going on and if she doesn't want to tell you then you have to give her space and let this play out.

As far as the exercising part, that would not have made her leukemia worse.

[Trey]

If you want to help her, several actions are needed, but you will need her help.  If she refuses, then we cannot help, either.  You are trying to give us information but you do not know the facts, which is understandable.

1) She needs to get copies of the Bone Marrow Biopsy report(s).  That will show her diagnosis, including Phase and much more.  The docs are required to provide copies of test results upon request from the patient.  She needs to get copies of all reports -- all of them.

2) She needs to get a clear explanation as to why she was considered to have failed the oral CML drugs, and why a transplant is necessary.  For instance, one such explanation would be that she was in Blast Phase CML. 

3) She needs to get the names of the "chemotherapy" drugs she has been given. 

If you want to help her, this information is essential.  Otherwise we are only guessing along with you.

[The98yanks]

Thanks again for taking the time to reply. She provided more information to me and answered a lot of the questions that I had. She said that it was found very early and that she could monitor it by taking a TKI or they could treat it with chemo. Her doctor thought that by treating it with chemo and BMT that the prognosis would be for a long term remission. Obviously great news.

The hardship now is that she is in a lot of pain from the chemo, yesterday was her birthday, and her family isn't there for her. She is talking about wanting to die because the pain is so bad. Of course this news, and the above news, I receive at the same time so it's very bittersweet.

[Trey]

A BMT has become a last resort option used very rarely for CML.  If she was diagnosed in early stage CML then there is no reason to use anything except the TKI drugs.  If that is indeed the case, I would get her out of that place and get a new Oncologist who knows what he is doing. 

[Susan61]

HI:  I am reading all the responses here.  If you are her caregiver, you should go to the doctor with her and find out exactly what she is being treated for, and what type of Chemo was she given.

      We are all on a TKI drug, like in my case Gleevec.  She is only 24, and maybe not understanding what she is being told.  Is it possible she has CML along with another type of cancer, and I hope that is not the case.

     Like Trey said, a BMT is a last resort.  If she only has CML, then I also agree that she needs to see another doctor for another opinion.  There are a lot of doctors who do not treat CML on a regular basis, and just learning about these TKI drugs.  Always look for a doctor who treats many cases a year of the disease that you have.

   Get copies of every test she has had, then let Trey know exactly what they all say.  He is great at breaking everything down for you to explain it to you. Write down everything that the doctor tells you.

   Something does not sound right with this whole scenario of what she is saying to you.

   We all want to help you to determine the right treatment for your friend.  Hope all of this helps you and her.

Susan

[CallMeLucky]

You need to get her away from that doctor and see a CML specialist as soon as possible.  Treating chronic phase CML with chemo and BMT is very bad practice given the effectiveness of TKI drugs.