My new bride was just diagnosed with cml. Can you be officially diagnosed with out the bone marrow results?
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My wife was recently diagnosed with cml.
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Hi Jason,
It sounds like the answer to your question is yes. trusamandfive was just diagnosed and said, "No Bone Marrow testing required."
Congratulations on your wedding! This must be a crap time time find out this sort of news, but CML is really very treatable so whilst of course it's a big shock your new wife will almost certainly live just as long and good a life as she would have without CML. The medication that is available nowadays is highly effective for the vast majority of patients.
To answer your question: yes, it can be diagnosed without a bone marrow test. Some places will still insist on the bone marrow aspiration, but more and more places don't even bother with it any more.
How did she come to find she had CML? Had she been having symptoms, or was it through a routine test?
David.
She had a tooth pulled and it wouldn’t stop bleeding so they finally did a blood test and her wbc was 300,000. So here we are. I go threw moments where I panic and think the worst. So it’s tuff. From what the dr. Says it’s cml. They’ve done two rounds of blood infusions and started her on hydrea. In 4 days her wbc is down to 103,000. Tomorrow morning the bone marrow results will be here and I’m really worried. Should I be as worried as I am?
Hi Jason I was diagnosed in March and had a similar high blood count of 330. When you first find out the news it is so shocking. I have a small family and I am only 38. I thought the worst but when I read up I understand that having it isn’t ideal things are very positive for most patients I too hope I am one of those. I was put on hydroxy for 3 weeks which got my wbc down to 14 then I started a tki called Tasigna (Nilotinib). It’s an awful lot of info to take in and it will become easier as time goes on I promise. Worry is normal with something like this trust me I have done my fair share. When bloods normalise and meds start working the worry lessens. My bloods have all been perfect since April. It’ll become your new normal with some mindset adjustments and support form your family and friends.
I wish you all the best with treatment.
Alex
Thank you everyone for all the info. The doctor came in and no bone marrow results yet but they are pretty sure it is cml. The spleen is shrinking and the wbc is going down. They have her on hydrea for now. She did get pneumonia and a fever and now her urine is getting infected. Is this a sigh the cancer is worse then expected?
Jason .I was diagnosed in June, but my PCP suspected it earlier. Yes, it is a shock, but already I (and my wife, kids, and grandkids) have settled into a new normal. The weekly blood tests ended this week as things have seemed to normalize. I don't get tested again for three weeks and that includes a QPCR.
Life does go on. I went fly fishing last week. I am traveling on other weekend trips to football games and a fishing trip. My wife and I are planning to proceed with our planned trip in October to Europe. The downside, besides the stress over the numbers and weekly trips to get blood drawn, includes fatigue and a sabbatical from drinking alcohol. Other than those things, I am good to go. Moreover, I give no energy to the superficial anymore.
I wish you and your bride the best and cannot make any assurances, but from all angles, this disease is treatable.
Best to you both!
Rick
PS My son has given me the name of a friend of his. She was diagnosed in her 20s and managed to successfully have a child.
Hi Jason
Its a scary time but as you will learn there are lots of TKI's for controlling CML now, once your wife's counts are back down to more normal levels Im sure they will start her on one and while they do have side effects, many people find this is more an issue in the first few months treatment/adjustment.
As for the extra illnesses, while I'm no expert I'm going to take a guess that they only indicate her immune system is lowered which is hardly surprising given the stress it is under at the moment. Most people diagnosed with CML are in the first stage, even those with very high WBC levels at diagnosis, as you learn more about CML you quickly realise that no two cases present exactly the same. Some people present with much lower WBC levels and no spleen enlargement but for whatever reason have more blasts present in their blood/marrow.
Hopefully you get the official result from the BM results but from what you have said it sounds like they are confident of a CML diagnosis.
Jason
wanted to welcome you here. My husband was diagnosed almost a year ago now. I remember it as a very scary, worrying time. He immediately looked and felt much worse- so pale,tired and freezing cold . And I felt very guilty that we hadn’t noticed he was so ill . We were worried about whether he would be able to work ( and that was terrifying as our health insurance is tied to his job).
But I would say within a month life already seemed a lot better. Once your wife starts the medication it’s incredible how fast the White blood count cells fall - I think Paul went from 22000 to 17k in about a week or so. So that really helps you feel better ( mentally and physically) and then in the second month his red blood cells started to bounce back and he started to have more energy.
Everyone has a different journey but I think we would all say that it does get much better within the first month to two months. My husband has days when he is tired and so he will rest but he works full time, goes camping, kayaking and mountain biking .
Make sure your wife stays very hydrated and eats well . That helps a lot with headaches and fatigue and nausea.
Best wishes to your family
Louise
Your first paragraph made me cry and feel very optimistic. I too was just recently married and last week we learned that my husband has CML. I tried to phone the hospital for some help and a rude woman hung up on me so I was extra scared. Finding this group and reading the posts has certainly given me hope and I’m not so scared.
Hi Jason and Crystal
So sorry that your better halves have been diagnosed with CML. The good news is that this is known as "the poster cancer" in that more is known about CML and they are very close to working towards a cure - more so than with other cancers. We are so lucky nowadays with 5 medicines which all work very well against the disease. Having children is very much a possibility and. indeed, I know of one lady who has had 3 since her diagnosis. It' s even easier if you are the man depending on the type of medication he takes. There is information about this on this site .
I was diagnosed 9 years ago and life goes on pretty much the same. The first few weeks were scary - a normal reaction to the diagnosis. The fear does go - you need time to understand what is happening.
I would advise three things - take the tablets every day ( don't skip them), drink lots of water throughout the day to protect your kidneys etc and write down your questions before you go to see the haematologist - we all forget our queries until we come out.
Try not to worry if you can - we all understand the roller coaster of emotion and that gripping fear in the "wee, small hours". It gets better. Ask any questions on here - this site is a wonderful source of info but take it slowly in small bytes.
Very best wishes to you both and your spouses,
Chrissiex
Getting CML is not fair - the odds are only about 1.5/100,000, which is about 20 times less likely than getting hit by lightning once in your lifetime. So the CML club is small, but the good news is that it is growing rapidly because the odds of long term survival are pretty high due to the TKI's available for treatment. I was diagnosed 2 years ago at age 63 and was certainly shocked and pretty scared. But I started to educate myself and spent time on this and other support forums and I know now that there are much worse diseases than CML. I had a bone marrow biopsy (BMB) and was told by my doctor that it was the only way to establish my specific BCR-ABL breakpoint and to determine if I had any other mutations. I am not sure if the breakpoint is all that important in the long run, but knowing if there are other mutations can guide the choice of initial TKI or at least that is what I was told. Other mutations are pretty darn rare, so maybe that is why some are not doing BMB's anymore. I sure wish I could have skipped it. You can certainly be diagnosed without the BMB.
I started on 600 mg/day of Tasigna and my blood pretty much normalized within 2 - 3 weeks which seemed like a miracle to me at the time. I know now that nearly everyone on a TKI hits this milestone very quickly though some will experience myelosuppression. I reached MMR (.1% PCR test result - international standard (IS)) in less than 90 days which is quite fast and reached my current level of <.003% in roughly 9 months. During this period, I worked closely with my oncologist to reduce dose to my current 150 mg/day which helped with most of my side effects, some of which were unusual, but none of which were life threatening. I adjusted my diet to a whole and organic foods and increased my workout regimen, all in an effort to boost my immune system as much as possible. With the help of people on this site, I started on Vitamin D3 and curcumin supplements. If your wife is a good responder, she should begin discussing dose reduction with her doc when she nears or reaches MMR.
I am not sure if I will ever feel what I used to think was normal, but I am within 95% of that most days or what many of us call the new normal. I see my life today as a blessing and have been fortunate to have the support of my unbelievably caring and loving wife who has been with me every step of the way over the past 2 years. Our relationship is even stronger now than it was before I was diagnosed. Your wife will be fine and you two will have a long life together. So go out and enjoy every moment you have together and tell your wife to try her best to not let CML define her life. Stay in touch with this group as well - there is a lot of knowledge and experience here. We get it because we got it.
I wonder about the statistics.
https://www.cancerresearchuk.org/health-professional/cancer-statistics/s...
1 in 840 men and 1 in 1,180 women will be diagnosed with CML during their lifetime.
I calculate that 119 in 100,000 men will be diagnosed with CML in their lifetime and 85 in 100,000 women.
https://metro.co.uk/2018/05/29/odds-struck-lightning-uk-7587969/?ito=cbs...
However, the BMJ have suggested that it is actually far less likely and it is a 10,000,000/1 shot that you will be struck by lightning.
But rest assured that the probability of a CMLer being struck by lightning is very remote.
I was diagnosed 1yr and 5 months ago and it has been a ride. Just be patient with your wife and support her all the time . She will need a hug every day and the touch of your hand in hers will make all the difference . She will have bad days and good days. She will cry and she will get mad. Just always have patience and don't take her anger seriously . She will be going through alot of emotions and will need your support all the time. My wife has always stood by my side and I'm still moody but she always smiles and then I snuggle up to her and we make every minute count. I'm going to live a long life and so will your Wife . Just make sure you know that all the small things Do Matter always . You guys will make it and you will get closer and be more in love . You just have to fight. I've been down and depressed and the people here can attest to that but I'm getting better and Your wife will too because seriously God made women have children because they are stronger than us mentally . Even though she is strong she still will need your Love and help always. I wish you both the best and don't worry as much Like David Fitz said the new TKI's do work and the new brake through's can only get better .
My stats for CML were the odds in a given year so I mistated that it was for a lifetime. See below:
https://www.cancer.org/cancer/chronic-myeloid-leukemia/about/statistics....
the chance of getting hit by lightning in one's lifetime is 1 in 3,000; CML is 1 in 526, so CML 6 times more likely.
Whatever the numbers are, both are highly unlikely. However, getting CML and getting hit by lightning are completely independent events, so the odds of getting one do not affect the odds of getting the other. But, if you get CML and get hit by lightning during your lifetime then I certainly hope you are lucky in love.