CLL - Referral to CLL Specialist

Posted by pebbles @pebbles, Dec 31, 2018

Thank you for this resource.

I have found substantial information about the treatment plans after diagnosis, criteria for diagnosis but not the protocol for referral to a specialist. I learned that CLL is typically found as a result of a workup for another health issue or wellness visit.

My main question is after the first blood test that showed elevated levels how long did it take for your provider to refer you to a specialist? Did your provider repeat the test before referral? If so, how much time elapsed between first results and repeat testing?

Finally, if you didn’t get a referral after the first test did you feel that time was wasted? I understand that CLL is mostly not fast acting and treatment is delayed until significant symptoms, so some period of delay is likely not something to be concerned about.

My story:

My CBC done by my primary care doc in mid-december reported elevated absolute lymphocytes (4400/ul), WBCs (11,300/ul) and alkaline phosphatase (122 IU/L). CBC is done every 6 months because of long term medication use with possible liver effects.

This is the first time there were any unusual anomalies. For about 2 months prior to the blood test I was recovering from oral surgery complication that removed a failed dental implant, bone graft and oral pain from a titanium film that was removed a week before the blood test.

I experience significant fatigue and intermittent shortness of breath that I did not mention to PCP at last appointment since I’ve always felt tired consistent with other health issues, my weight and denial.

The lab provides patients with access to results after the doctor reviews them. After consulting Dr. Google (extensive research) I called primary care and asked if doctor saw results, if I should come in before my scheduled appointment 6 months away, etc. The gatekeeper said that if Dr. Was concerned the nurse would have called. The nurse hasn’t called.

Being a former caregiver and advocate for my late husband who experienced too many missteps in early diagnosis of several disorders I am on heightened alert when I read lab reports that indicate out of normal range results. And for some reason I am more hesitant to be the dogged advocate for myself than for others. Your experiences would help me put things in perspective and/or motivate me to get past the gatekeeper and see my doctor before my next scheduled appointment in 6 months.

Thanks in advance for any guidance and sharing your experience.

Hello @pebbles, I'd like to invite some members who have been diagnosed with CLL for some time and have either received treatment or on the wait-and-watch approach that may be able to tell you a bit more about their journey finding a specialist or hematologist. @ssid, @dougmann, @sofaramnotdead, recent new member @oceantroll, and @pokeyspride2002 have all talked about CLL in one way or another and may be able to share their experience finding a provider.

@pebbles, if you don't mind sharing, have you asked your PCP about getting you a referral to a specialist?

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@justin. Thank you for your response. I will see what I can find by search on the members you suggested. I apologize for not replying sooner but the notification went to junk folder.

I have not asked my PCP about a referral. Since he didn’t call after seeing the report it’s his position that the results are not remarkable. It’s unlikely he would provide referral based on past experience.

I contacted the Mayo consultation service though. One of the criteria is waiting 90 days after surgery to set up an appointment with internal med. Hematology wouldn’t do anything without referral from PCP or Mayo IM. Perhaps my PCP isn’t concerned with the results because he knew I had oral surgery. I will wait another few weeks for the 90 day period to pass and pursue it further with PCP. I have a DEXA scheduled so I will set up an appointment to go over results and inform him of fatigue, etc.

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I have CLL, and have gotten monthly infusions of immunoglobulin (IVIG) for 2 years. This has made a tremendous difference in my health, as prior to these infusions I had continuous respiratory infections. Now my local infusion center tells me there is a shortage of the drug, and they cancelled my infusion. Has anyone else encountered this, and if so, how have you handled it?

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@jvertalka

I have CLL, and have gotten monthly infusions of immunoglobulin (IVIG) for 2 years. This has made a tremendous difference in my health, as prior to these infusions I had continuous respiratory infections. Now my local infusion center tells me there is a shortage of the drug, and they cancelled my infusion. Has anyone else encountered this, and if so, how have you handled it?

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Hi, @jvertalka – I can imagine it would be very unpleasant news to suddenly have your infusions of the immunoglobulin (IVIG) you've been on for 2 years suddenly cancelled due to a shortage reported by the infusion center, especially as they have made a tremendous difference in your health.

I wanted to let you know that I moved your post about shortage of immunoglobulin into this existing discussion where other members are talking about chronic lymphocytic leukemia‎ (CLL) so you can connect with others who have this disease or another form of leukemia and may have encountered a similar situation. Hoping that members like @bflattenor @81ue @lesliem7600 @oceantroll @pokeyspride2002 @ssid @dougmann @robbhiller will join in and offer input on the shortage, the cancellation of the infusion and how to handle this situation. @1nan also may have some thoughts.

What has your hematologist recommended you do with your treatment at this point, in light of the shortage you encountered, jvertalka?

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@lisalucier

Hi, @jvertalka – I can imagine it would be very unpleasant news to suddenly have your infusions of the immunoglobulin (IVIG) you've been on for 2 years suddenly cancelled due to a shortage reported by the infusion center, especially as they have made a tremendous difference in your health.

I wanted to let you know that I moved your post about shortage of immunoglobulin into this existing discussion where other members are talking about chronic lymphocytic leukemia‎ (CLL) so you can connect with others who have this disease or another form of leukemia and may have encountered a similar situation. Hoping that members like @bflattenor @81ue @lesliem7600 @oceantroll @pokeyspride2002 @ssid @dougmann @robbhiller will join in and offer input on the shortage, the cancellation of the infusion and how to handle this situation. @1nan also may have some thoughts.

What has your hematologist recommended you do with your treatment at this point, in light of the shortage you encountered, jvertalka?

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Hi,
This discussion has been dormant for 6 months. Perhaps there is a better location for the question.

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@lisalucier

Hi, @jvertalka – I can imagine it would be very unpleasant news to suddenly have your infusions of the immunoglobulin (IVIG) you've been on for 2 years suddenly cancelled due to a shortage reported by the infusion center, especially as they have made a tremendous difference in your health.

I wanted to let you know that I moved your post about shortage of immunoglobulin into this existing discussion where other members are talking about chronic lymphocytic leukemia‎ (CLL) so you can connect with others who have this disease or another form of leukemia and may have encountered a similar situation. Hoping that members like @bflattenor @81ue @lesliem7600 @oceantroll @pokeyspride2002 @ssid @dougmann @robbhiller will join in and offer input on the shortage, the cancellation of the infusion and how to handle this situation. @1nan also may have some thoughts.

What has your hematologist recommended you do with your treatment at this point, in light of the shortage you encountered, jvertalka?

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I sent a message to him on the Mayo message board, and a nurse replied that I should check with other infusion centers in the area. I'm afraid I think this reply demonstrates how Mayo medical personnel (wonderful in many ways) often don't have a grip on what healthcare is like in other parts of the country. Every infusion center I called said my doctor would have to call them – not me. Called my local primary care doc and he is on vacation until next week. No one else in his practice (about 20 docs total) could handle it. So I'm waiting on his return call, hopefully this week.

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@pebbles

Hi,
This discussion has been dormant for 6 months. Perhaps there is a better location for the question.

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Hello @pebbles. Your observation is right about the break in posts within this discussion. Sometimes conversations on Connect go quiet for a period of time, but can become animated again when someone posts a relevant post. @pebbles, if you are comfortable, do you have any insight you could share with @jvertalka?

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@JustinMcClanahan

Hello @pebbles. Your observation is right about the break in posts within this discussion. Sometimes conversations on Connect go quiet for a period of time, but can become animated again when someone posts a relevant post. @pebbles, if you are comfortable, do you have any insight you could share with @jvertalka?

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Hi Justin,
I would gladly provide some insight but I have not received a diagnose. There is another website that is quite active. If it’s not contrary to this site’s rules I can post it.

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@pebbles

Hi Justin,
I would gladly provide some insight but I have not received a diagnose. There is another website that is quite active. If it’s not contrary to this site’s rules I can post it.

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Hello @pebbles

You mentioned in your last post that you have not received a diagnosis yet. I'm just wondering if you are feeling any better or if the symptoms mentioned in your first post (fatigue, intermittent shortness of breath) have subsided? Also, have you had any follow-up blood work?

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@hopeful33250

Hello @pebbles

You mentioned in your last post that you have not received a diagnosis yet. I'm just wondering if you are feeling any better or if the symptoms mentioned in your first post (fatigue, intermittent shortness of breath) have subsided? Also, have you had any follow-up blood work?

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I decided not to pursue at that time because the lab results weren’t that much out of range plus I went into plain old denial with respect to the symptoms. Today I had blood drawn as part of my 6 month PCP wellness visit. I’ll decide if I need to take any steps once I see those results.

I greatly appreciate your concern.

When I was seeking info on CLL I found this on-line resource that sends daily emails listing questions and community answers about CLL. Perhaps you are aware of it but maybe not. I hope this is helpful.

Send posts in PLAIN TEXT to CLL@listserv.acor.org
Contact list managers at cll-request@listserv.acor.org
Search archives at http://listserv.acor.org/archives/cll.html
CLL Doctor List at https://sites.google.com/site/acorclldoctorlist/
CLL List Help pages at https://sites.google.com/site/clllisthelp/home

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@pebbles

I decided not to pursue at that time because the lab results weren’t that much out of range plus I went into plain old denial with respect to the symptoms. Today I had blood drawn as part of my 6 month PCP wellness visit. I’ll decide if I need to take any steps once I see those results.

I greatly appreciate your concern.

When I was seeking info on CLL I found this on-line resource that sends daily emails listing questions and community answers about CLL. Perhaps you are aware of it but maybe not. I hope this is helpful.

Send posts in PLAIN TEXT to CLL@listserv.acor.org
Contact list managers at cll-request@listserv.acor.org
Search archives at http://listserv.acor.org/archives/cll.html
CLL Doctor List at https://sites.google.com/site/acorclldoctorlist/
CLL List Help pages at https://sites.google.com/site/clllisthelp/home

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Hello @pebbles

I'm glad that you shared some websites for CLL. In your first post, you mentioned fatigue connected with another health problem. Is this check-up going to check on the status of that problem as well?

Are you being seen at a multidisciplinary health center like a university medical center or a Mayo facility?

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@hopeful33250

Hello @pebbles

I'm glad that you shared some websites for CLL. In your first post, you mentioned fatigue connected with another health problem. Is this check-up going to check on the status of that problem as well?

Are you being seen at a multidisciplinary health center like a university medical center or a Mayo facility?

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Some new info. Last week I had a blood test during semiannual pcp visit. The alkaline phosphatase is still elevated. I don’t know the level yet. Doctor has requested I go for a bone scan. I did not mention my suspicions from 6 months ago. Hopefully I can get in quickly for the test.

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Hi @pebbles

I appreciate the update. Is the elevated alkaline phosphatase an indicator of CLL? I do hope you are able to get the bone scan done soon.
Will you post again?

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@pebbles

Some new info. Last week I had a blood test during semiannual pcp visit. The alkaline phosphatase is still elevated. I don’t know the level yet. Doctor has requested I go for a bone scan. I did not mention my suspicions from 6 months ago. Hopefully I can get in quickly for the test.

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Hi @pebbles,

I hope you are doing well. As it has been a few months since you last posted about a possible bone scan, I was just wondering how you were doing. Were you able to get the bone scan scheduled yet?

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Howdy folks. I would not wait for anything when it comes to diagnosing an illness. Especially if it could something as serious as cancer. I went to a Dr for a few years prior to being diagnosed. I was on meds at the time I noticed something was not right with me. All he did was either increase my meds’s strength or change them altogether. Finally my wife said I should change Dr’s. Which I did. After a lot of diff tests I was diagnosed with a blood cancer. It was either CLL or another one. Slips me which one right now but the treatment was the same. My wife came with me to see the Oncologist and when he said I had cancer, i felt like Homer Simpson. Everything was blah blah blah. Thank god she was there with me. Because it took so long to diagnose this, my CLL will never be cured. However after 12 bags of Chem and 6 bags of Rituximab, i’m 100% in remission. Its been a real hard grind but at least I’m on this side of the grass!!!!!! I only have to go for bloodwork every 4 months and so far so good. Listen to what your body tells you folks and sometimes a second opinion might just save your life!!!!!!

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