Medical Opinion Needed

[mj_1903]

One of my best friends is dying from Leukemia. I am looking for some better medical opinions than what her doctor is giving her because I believe that a local hospital in Sydney, Australia is not giving her the best treatment she can possibly get.

If anyone knows anything that can help, please post in here. If you have questions about treatment, etc. I can get answers for them. If you recommend contacting a doctor somewhere, feel free.

The reason I am posting here is because of the friendship of the Mac community, I know you guys would help if you could.

Cheers,

Mat

[gwuMACaddict]

well... not a doctor, but my father went through a fight with lymphoma a few years ago. (he is ok, full recovery- thank God). the doctors always told him that what he had was very similar to lukemia. in fact, since he has had lymphoma, his chances to get lukemia are increased by like 50% or some outrageous number. anyhow... the doctors kept him on a lot of the new drugs, to try to fight it with out as much chemo... one of the drugs was Rituxan. definitely check that one out. when he took it is was in its trial stages, but i hear that its now being touted as one of the new great cancer fighting drugs.

best of luck to you- all my prayers

[teabgs]

well, my mom has leukemia, she's stable now which is great. There are more than one kind of leukemia though....and I don't ever want to give medical advice to anyone since I'm no doctor...BUT, I will give you a site that CAN give you advice:
http://www.cancer.org

hope you get what you're looking for.

[wdlove]

I pray that your friend will find comfort and healing. Has your friend contacted a teaching hospital located in Australia. I would think that a large city like Sidney might have a medical school that is doing research on Leukemia. Mat your friend is very lucky to have, just being there for him is a great help. Any person that is ill such as your friend really needs family and friends that are supportive. Just being there and listening is really improtant.


I did a Google search and found a lot of sites related to Leukemia.

http://www.leukemia.org/hm_lls

http://www.leukemia-research.org/

www.leukemiafoundation.org

www.goaskalice.columbia.edu/0556.html

[wdlove]

I received a response form the Leukemia Society. You might find this information helpful. They may be able to assist you also, always good to have a backup. Hopefully they can be a comfort for you and you a comfort for your friend. He is very lucky to have you as a friend.

http://www.leukemia-lymphoma.org/all_contact.adp?item_id=4390

[topicolo]

What type of leukemia is it? is it acute or chronic? I had a friend die of leukemia when I was 12 and she did not go through an easy time. I truly hope this doesn't happen to your friend.

I wish your friend good luck in his fight! Tell him to hang on, he'll get through.

[mj_1903]

It's a her actually. :)

She has ALL and is moving into the age where its not likely she will recover (this is her second case of it after it went into remission).

Thanks for your thoughts and the links.

Mat

[ecche]

what sort of leukaemia is it? AML?

or is it a lymphoma? hodgkin or mon-hodgkin?

when did it start? what has she had for treatments? has she had a bone marrow transplant? chemotherapy? recent blood count? etc etc

too many question unanswered too really give you a specific advice.

most important: trust your local doctor and keep asking him questions until you really understand his answers.

i wish you both the very best of luck!!!

[mj_1903]

Its ALL (Acute Lymphoblastic Leukemia).

She had it first detected almost 2 years ago. The first treatment was a partial success although Leukemia cells were still in her system. Doctors declared it in remission.

Three weeks ago her blood test showed that her Leukemia was back rather viciously (as Acute does). She is having heavy Chemo right now (methotrexate). She doesn't have a suitable bone marrow donor, but right now her Leukemia is stable but she is failing to respond to attempts to clean it out of her system again.

Hope that info helps.

Mat

[ecche]

i overlooked that you had already written she had ALL. sorry about that.

patients with ALL have over the past decades greatly benifited from the fact that they are in almost all instances treated at haematological or oncological centers, since treatment is very complicated and should rest ONLY in the hands of those who deal with this kind of disease every day. it is generally not to be treated at a general hospital. i am sure that there is such a center in sidney(although i actually do not know that for a fact).

treatment can be divided into four phases: a) induction period for a fast and complete extermination of all the "blast" cells using a combination chemotherapy (drugs like vincristine, daunorubicin, prednison, l-asparaginase, cyclophospamide, cytarabine, mercaptopurine and methotrexate). in this phase the patient is very vulnerable as all his bone marrow is temporarily destroyed and he needs to be isolated.
b )consolidation period , where still remaining blasts that will not show in the blood counts etc are destroyed. frequent blood counts and bone marrow tests are needed here.
c) re-induction period, where high-dose chemotherapy aims again at remaining leukaemic cells.
d) a milder sort of chemotherapy ensures a lasting effect of the above regime (treatment for at least two years, using for example weekly injections of methotrexate and marcaptopurine).

95% of patients reach remission.
60% are finally healed.
Remission does NOT mean that a patient is healed.

a few other things:
ALL can be subdivided into subtypes, some of which are more aggressive than others.
Many patients show chromosomal anomalies such as the philadelphia-chromosome. this is unfavorable with regard to the outcome.
presence of other disease can make things much worse (HIV for example).
a bone marrow transplant is not the first line of treatment, but must be considered in the second remission.

does this help? probably not much. i wish i could help your friend more.
make sure she is treated by specialists.
if a bone marrow transplant is needed, look for donors. there have been instances here where patients have successfully looked for suitable donors via the media...

good luck again

[mj_1903]

Thanks for your reply.

I would be interested to know if you had any more information about the subtypes of ALL? The doctors have mentioned that she may have a subtype (or something along those lines) but they can't be sure. What would this mean? Simply different chemo drugs? How is it detected if it can be?

Thanks again for your information, I have found literally nothing on the above.

Mat

Edit: Just to add, she is an outpatient at the Sydney Cancer Center which makes sense regarding your statements.

She will be getting her blood count again tomorrow so I will give you that information if it will help in anyway. Also, she is having minor chemo right now as there are not enough hospital beds for her to take one (not a good sign IHMO).

[ecche]

subtypes of ALL are determined by examining a sample of bone marrow: certain morphological criteria (what the cells look like), cytobiochemical criteria (how they react with certain agents such as peroxidase, PAS, esterase etc), immunological criteria (what kind of surface antigens the cells carry) and moleculargenetical criteria (presence of a t-cell-receptor, gene for example) apply.

ALL subtypes: L1 and L2 (B-ALL, T-ALL, 0-ALL, cALL) and L3. Differentiation as above.

all subtypes are treated more or less in the same way. only the prognosis varies.

approx. 5% of leukaemias can not be differentiated zytochemically at all. then, sometimes surface markers sometimes show them to be of the ALL type . if not, they are called subtype M0.

if your friend is an out-patient now, her condition is (hopefully) not too bad at the moment.

how old is she by the way? generally speaking there are a few factors that make the prognosis comparatively poor: presence of philadelphia chromosome, subtype 0-ALL, age above 35 when first diagnosed, very large numbers of leukaemic cells in the blood count when first diagnosed and a sluggish reaction to initial (chemotherapy) treatment.

[mj_1903]

Well she is an outpatient right now, will be an inpatient in a few weeks.

Fortunately she was diagnosed at 16 and is now 18 moving on 19. I hear this is basically the perfect time period, or close to it.

Thanks for the info, its greatly appreciated.

Mat

[ecche]

good!!

post her blood count tomorrow or mail me directly if you want to.

and ... as warren zevon put it: "enjoy every sandwich!"

[mj_1903]

Turns out she has had a bone marrow sample in the last week. I will see what info I can grab from that as well.

Mat

[wdlove]

Originally posted by mj_1903
Well she is an outpatient right now, will be an inpatient in a few weeks.

Fortunately she was diagnosed at 16 and is now 18 moving on 19. I hear this is basically the perfect time period, or close to it.

Thanks for the info, its greatly appreciated.

Mat

Her young age is definitely a big plus in her favor. Are her doctors in contact with leukemia specialists in the US? I hope realizes how lucky she is to have such a devoted friend.

[mj_1903]

Brief update. No blood count or bone marrow results right now because she is going in for a test on Monday, but the news is she has stabilized, which is good news, but the doctor said she has developer Multi Drug Tolerance.

Mat

[darkblue]

My husband works in oncology, I have asked him about your friend's condition, but he has said that each cancer patient is different and it's difficult to give specific information even if you give specifics such as immunophenotype or morphological subtype.

Find out the above though, and I will ask him again, of course it will only be general information. I think that Sydney offers some of the world's best treatment and quite often it is the case that somebody who has relapsed will not be fit to travel elsewhere in search of better treatment.

I work as a nurse in Westmead hospital in Sydney and I help many cancer patients and their families, if there is any other information that you require feel free to ask.

Jenni M.

[mj_1903]

Thanks for your reply. I will attempt to get as much information as possible but I am disappearing for a few days starting Monday morning (she is getting tests done Monday morning).

Is your husband working in the Sydney Cancer Center? If so, there could be a conflict of interest.

Mat

[darkblue]

No he doesn't work at the Sydney Cancer Centre. He works here at Westmead and although he is my husband, there is no bias involved because we both believe that when it comes to somebody's life, especially a condition like ALL an honest opinion is necessary.

Do you know if she has any family history of cancer related disorders? Is there a chance that she could have been exposed to chemicals such as benzene, formaldahyde (if a parent/relative/friend works in such areas) or even cigarette smoke?

What's important is that she doesn't give up hope on herself and seeks stem cell or bone marrow transplantation as an option, under no circumstances should your friend decide to become a palliative patient, considering her young age.

[mj_1903]

Was just being cautious in case your husband was her doctor, thats all. :)

It seems its hereditary but she cannot give me any information to support that (her Mum died from something similar to Leukemia but doctors could not diagnose it).

I doubt she would have been exposed to any of those chemicals although her father did smoke but she can not remember when, she assumes before she was 5.

Right now she is going to stick with the standard treatment, that being chemo and radiotherapy and her family and I will make sure she doesn't do anything drastic unless all options are completely exhausted. She has a will to live and fortunately continues to smile through all of her suffering so I doubt she will move off the beaten track.

As to her condition, as of last night doctors described it as stable. One of the issues that I have been having, and the main reason why I posted is that doctors are not giving her the information she desires. We want to know for instance what drugs she is taking, what treatment options she has, the subtype, her blood count, etc. but her doctor is refusing to give over the information saying such things as "thats just the way it is dear". I cannot see any reasoning for this...

Thanks for assisting, its greatly appreciated.

Mat

[darkblue]

Right, well that's not always easily answered. Your friend may be well informed of her treatment plan and prognosis but may not want to disclose it fearing that it may grieve those around her and possibly cause conflict, especially if her own mother passed away and she was able to see beforehand how family and friends have dealt with the news.

However, just to make it clear there is no known hereditary factor in cancer. It sounds like it was just unfortuanate coincidence that her mother and herself have been diagnosed with cancer.

It is undoubtedly frustrating to both family and friends if she does not allow them to recognise how her treatment is progressing. However it is also possible that she really doesn't know, or may not wish to know what the doctors are telling her. I would ask her questions, gently but firmly to establish whether this is the case. It is important for the people around her as well as herself to understand what is going on with her treatment so that they can support her in any way possible. As anybody would understand, it is devastating for one to have to battle cancer without any support.

It is also likely that she will not know what subtype she is in relation to her cancer. This information is overlooked by patients because it is complicated to comprehend, and complete blood counts or (CBC) change on a daily basis, she will tested for those things everytime she goes into hospital, I'm assuming that she is an outpatient?

Do you know if she takes her drugs intravenously or orally, or both? I would like to know what it is that you are informed of to date as my husband and I are both dedicated to working with cancer patients (our close friend passed away from lymphoma two years ago).

Hopefully this information helps you.

[mj_1903]

Again, thanks darkblue.

As for her disclosing her condition, she is loathe to, but does tell us (well more specifically only me). For instance, we know that she is not responding to the same treatment that she responded to last time. We also know her blood count has been lower and dropped faster than last time, although 'faster' with acute is not really a descriptive term if my knowledge serves me correctly.

I'm sure she would understand what is being described to her if told because she and I have been studying up on Leukemia as much as non-specialists could possibly study. Saying this of course, neither of us knew the subtypes, although we knew they existed.

At this time she is an outpatient, but will shortly become an inpatient. Right now she takes drugs intraveneously (we know its Methotrexate) as well as some oral drugs, but will be moving to a new set of drugs shortly which will be administered via catheter (I think that goes in on Monday).

Just to reaffirm, this is her second episode of Leukemia after she was in remission for approx 18 months.

If you would be willing, we also have some questions regarding diet and if there are any ways of being able to maintain her energy levels as this round of treatment is sapping her rather heavily.

Also, she is very grateful of any information that you have given or will give and is frankly astounded that people would want to help as much as ecche and yourself.

Mat

[darkblue]

There are many different aspects to CBC's. There is a count for red blood cells, white blood cells and platelets. This the main round of information which would be offered to her.

Because she has relapsed, it is often the case that her doctors will attempt to treat her with what got her into remission the first time around. It is most likely that her body has somewhat become immune to the low dose chemotherapy which she would have been undertaking at the time of relapse.

As an outpatient, she will be gradually building up on her chemo treatment. Methotrexate is a common leukaemia drug and is reliable in preventing cancer cells from building up in her central nervous system (CNS) and her brain.

In relation to what she should eat during her treatment, a dietician may be called upon but is not necessary. She should use common sense and eat a varied and balanced diet and in moderation. She may not be able to consume food in normal portions (a common side effect of chemo may cause nausea and vomiting, loss of appetite, mouth ulcers) but she should eat small amounts often and restrict alcohol intake and should not smoke.

My husband says that a lack of energy is an unavoidable factor in leukamia and indicates that she has a low red blood cell count and quite probably be anaemic.

If you know her CBC then we could help you understand what they mean if you are wanting to know more about them.

[mj_1903]

Got some results from her (she called her doctor). Here you go:

RBC: 2.9
WBC: 9.0
Plt: 102
Hmt: 29%
Hb: 10.2

She would like to know what it all means, obviously Red Blood, White Blood, Platelets, Hb = Hemoglobin but I don't know Hmt.

If memory serves me correctly, 102 correlates to a reasonably stable platelet level. RBC seems very low though, is this correct?

Mat

Edit: More info. "the B lymphocytes antibodies are the affected morphological subtype for her". Does this make sense? I assume that is B-ALL as ecche said above.

[darkblue]

Ok, RBC (red blood cell) count is rather low, but that is expected if you take into account the factors of being female, her age and the effect of chemotherapy.
This would explain her tiredness, and that is a low number which means that she would get breathless easily, feel weak, tired and probably will have trouble moving around for long periods of time.

Her WBC (white blood cell) count is high for a female who is not yet an adult. The normal range is between 4 and 10/microL/blood
because she has ALL it is expected that this figure would be high, it is a common symptom and diagnosis measure of leukaemia. In healthy patients, a high WBC is good because it indicates that the immune system can fight infections well and prevent the person from becoming too ill and any injuries are healed quicker.

However, in your friend's case, a high WBC most certainly means that there is a high count of malignant or defective white blood cells, immature and cause problems of bone pain and other sickness which would make her very ill. The purpose of her treatment would be to eradicate these malignant white blood cells and do a bone marrow/stem cell transplant of 'clean' ones.

Platelets are also low, she would probably be experiencing unpleasant effects such as bruises and heavy bleeding. It is not too low as to worry about for the time being, if it goes below 80-90 then she would be requiring blood/plasma transfusions.

Hmt is the haematocrit or the percent of blood that is composed of blood cells, this corresponds with her low RBC count, and is similar with haemoglobin, just different measures of relativity.

Your friend looks relatively stable for now, but of course as acute leukaemia is unpredictable from patient to patient, she will be tested regularly to check for further abnormalities.
Is a bone marrow or stem cell transplant on the agenda?

[mj_1903]

Just so you know, I made an edit to my last post with more information.

Doctors have discussed a bone marrow transplant but no one in her family is a suitable donor so they are looking in the database.

Thanks again,

Mat

[darkblue]

There are several different types of subtypes for morpholological categories. B-cell lymphocytes which are affected generally hold a better prognosis than T-cell type.
However, saying that, there are different types again of B-cell affected leukaemia.
There is precursor B cell and normal B cell. Precursor is more common among children and young adults.

A bone marrow/stem cell transplant is risky and some patients choose to undertake chemotherapy and possibly just maintain the illness rather than do a transplant because of the possible complications involved.

[ecche]

what a lucky thing that you found somebody in your immediate vicinity to discuss this.

maybe you should meet in person with darkblue...

if any question arises do not hesitate to contact me

[mj_1903]

Thanks ecche, we have definitely valued your input, so feel free to comment, if darkblue doesn't mind.

Mat

[darkblue]

Feel free ecche, it sounds like you are well informed and I'm sure mj_1903 would appreciate anything that would help his friend.

[ecche]

hello, how is your friend? do you have any news. please keep us informed. thank you.

[Doctor Q]

Just so you know, I made an edit to my last post with more information.

Doctors have discussed a bone marrow transplant but no one in her family is a suitable donor so they are looking in the database.

Thanks again,

MatYou are probably referring to the National Marrow Donor Program (http://www.marrow.org/NMDP/about_nmdp_idx.html) registry. Despite the name, it is used internationally. Her chances of finding a match depend on luck and on ethnic background, because some ethnic groups have a much larger population in the registry than others. Do you mind telling us her ethnicity and where her family came from? You don't have to be of the same ethnic type to match someone in the registry, but it greatly increases your chances since matches are based on Human Leukocyte Antigen (HLA) typing, and antigen types are inherited.

I'm in the registry and, if I match, I will donate marrow or stem cells for your friend.

[mj_1903]

hello, how is your friend? do you have any news. please keep us informed. thank you.

Right now she is in hospital, she took a turn for the worse a week ago from the sounds of things but I am not allowed to visit her for a variety of reasons (one is medically).

Supposedly she will get out of hospital on Monday if all is well, so I will give her a call then to see how everything is going.

Mat

[wdlove]

Right now she is in hospital, she took a turn for the worse a week ago from the sounds of things but I am not allowed to visit her for a variety of reasons (one is medically).

Supposedly she will get out of hospital on Monday if all is well, so I will give her a call then to see how everything is going.

Mat

I'm very sorry to hear about the relapse of your friend. My prayers are with both of you. Will be waiting for your next report.

[darkblue]

Hello, how is your friend doing? Hopefully all is well.

If my memory serves me correctly, your friend's leukaemia relapsed 3 or 4 weeks ago...so she will be coming to some of the most demanding and difficult times in her life soon if not already, as treatment for a relapse can be very taxing.

We're very much hoping for your friend's wellbeing and an effective treatment plan to put her back into remission. Please do keep us all informed. :)

[mj_1903]

Hello, how is your friend doing? Hopefully all is well.

If my memory serves me correctly, your friend's leukaemia relapsed 3 or 4 weeks ago...so she will be coming to some of the most demanding and difficult times in her life soon if not already, as treatment for a relapse can be very taxing.

We're very much hoping for your friend's wellbeing and an effective treatment plan to put her back into remission. Please do keep us all informed. :)

Well, she just came out of hospital. She spent a week there in monitoring after she had her catheter inserted.

As for her well being, she is still in great spirits. The doctors "have not given her any grave looks" (which medically means nothing) but I will get a CBC from her (she says looking at the numbers that nothing has changed).

I will probably have more info tomorrow, but again, thanks for your support and help, she is deeply grateful and so am I.

Mat

[darkblue]

Excellent news.

Nice to hear that your friend is doing well. It sounds like she's got hope in herself, and that's most important. I'd start to get worried if she starts withdrawing herself, particularly in social situations or general day to day things. It looks like there's no need to worry about that though. :)

CBC's need to be assessed properly and are usually only useful to those in the medical profession who can analyse them and interpret their meaning, so it's OK if she doesn't have her CBC's. Unless they start to vary dramatically.
If her RBC gets too low, she'll lack energy, become breathless and extremely tired at things which might seem very simple like walking up and down stairs, or standing unassisted for even a few minutes.
If her WBC gets too low, she'll have to be in an isolation room at hospital because any little bug that the average human is immune to, will be potentially fatal to her.
She may also be required to get a blood transfusion as time goes on, especially if her RBC and her platelet count drops.

I'm sure you knew all the above with what research you've done, :cool:
What sort of catheter are you talking about?

It's great to see that she has such a great friend who cares and is wise enough to be willing to seek a second opinion. Support from family and friends is very important for cancer patients, I'm sure she'll do very well.

[MongoTheGeek]

Excellent news.

Nice to hear that your friend is doing well. It sounds like she's got hope in herself, and that's most important. I'd start to get worried if she starts withdrawing herself, particularly in social situations or general day to day things. It looks like there's no need to worry about that though. :)

CBC's need to be assessed properly and are usually only useful to those in the medical profession who can analyse them and interpret their meaning, so it's OK if she doesn't have her CBC's. Unless they start to vary dramatically.
If her RBC gets too low, she'll lack energy, become breathless and extremely tired at things which might seem very simple like walking up and down stairs, or standing unassisted for even a few minutes.
If her WBC gets too low, she'll have to be in an isolation room at hospital because any little bug that the average human is immune to, will be potentially fatal to her.
She may also be required to get a blood transfusion as time goes on, especially if her RBC and her platelet count drops.

There are drugs that may prevent the need for transfusions. There is Epo (that is what the nurses called it. Its trademarked as Procrit. It does a fairly good job (not for all cancers and expensive as hell. If you don't have insurance its like 3-5k a pop) There are similar drugs for wbc's (neupogen) a more reasonable 1500. I never had platelet issues. Even with several shots of the procrit (you'll need more than 1) I still had to get a transfusion. (3 units) The second one was garlicky.