New ER for low hemoglobin

[Goopteal]

I am preaching to the choir to tell you that the US healthcare is a mess. I still do not have answers or a transfusion. My hem/onc wanted me back in the ER, and last night’s ER doctor did not do all the bloodwork she wanted even though the two hospitals are in the same system. I chose to go to Yale Nee Haven hospital because it is the closest with a CLL specialist. I have been on a gurney since 3:30 awaiting the hemotologist. My onc said it is possible I may just need steroids, folic acid and monitoring. If not, a blood transfusion. She also mentioned the possibility of rhitazitabe (excuse the spelling). I definitely did not want to say yes to a drug treatment without a specialist.

[SofiaDeo]

The oncologist who sent you to the ER did not send any orders? That sounds like what the problem might be. Can you call your oncologist, is someone on call? There should have been orders for the additional labwork sent, to see if the steroids/folic acid is the necessary treatment, or not, you shouldn't be waiting for an in house random hematologist.

If your platelets happen to be very low, I am guessing the drug your doctor was referring to is "rituximab."

[LeoPa]

A sudden drop of hemoglobin from 13 to 7? It could be auto immune hemolytic anemia. Tell them about the possibility because it could be life-threatening.

[Goopteal in reply to LeoPa]

Thank you for your reply. This is what they have diagnosed.

[LeoPa in reply to Goopteal]

Glad to know they got the reason. Now they can get it under control, you'll be okay. 🤞

[Wen_dy in reply to Goopteal]

I have been diagnosed with autoimmune haemolytic anaemia and still on W&W with my CLL, initially it was treated with blood transfusions and then a course of steroids upon discharge, I was told that the CLL triggered the AIHA and thankfully so far have only required another transfusion. I have regular blood tests to monitor my haemoglobin and everything is stable ( so far!). Recently I have been suffering extreme fatigue, sleeping most of the time and pretty bad depression, thankfully my Haematologist ordered blood works for almost absolutely everything! I’m so glad she did……it was discovered that I have Hypothyroidism , prescribed Thyroxine and slowly starting to feel the benefit. Having CLL was something I needed to concentrate on and if and when treatment would be needed, instead I have developed two other conditions which thankfully were picked up, treated & monitored along with the CLL.

I was told that if I had another episode of AIHA then they would start treating the CLL as it being the trigger, although my levels are low and ordinarily would not require treatment the AIHA is life threatening so is taken very seriously. Insist on regular blood works and make notes of all changes to how you are feeling. It is so important ti have a good relationship with your specialist, remember the symptoms you can experience with AIHA: Breathlessness, worse on exertion, pale skin & the inner lower eyelids, fatigue & having a “rust” colour urine. I hope some of this helps. 👍

[mk2045 in reply to Wen_dy]

All this is true. I went on Calquence after my 2nd episode in a year - to keep things at bay - and I've been fine for over two years and the Calquence has been very good for me. My hemoglobin was 5.2 the first time and I was in the hospital and got transfusions. The next time we caught it early and no hospital or transfusion. Rituximab and prednisone both times.

[Goopteal in reply to Wen_dy]

Thank you — this does help! I am sorry for your complications, but happy that they were found and treated. I did not have a CLL specialist because I was just diagnosed one year ago. After this happened, I went to the ER of a more reknowned hospital, Yale New Haven, because they are the closest with CLL specialists. I will change my doctor to here for now. I am in CT and was starting to think about Dana Farber or Memorial Sloan Kettering.

I am not presenting with any symptoms yet, so they gave me folic acid and steroids for now with blood monitoring in hospital. I just had a contrast CT to check my lymph nodes.

[Wen_dy in reply to Goopteal]

Yes, steroids & folic acid until my haemoglobin improves seems to be the standard, I guess this shows the importance of regular blood tests, my CLL was diagnosed in 2018 after a routine and unrelated blood test, W&W was the treatment plan as I was asymptomatic, having never been an inpatient it was quite a shock to the system to have two emergency admissions in 2019 for blood transfusions & a battery of tests, I guess I’ve done quite well to avoid hospital stays for nearly 65 yrs! Sending good wishes from the U.K 🇬🇧. These forums are truly wonderful in connecting us for support & information 👏

[Goopteal in reply to Wen_dy]

That is very reassuring, so thank you for your response. I am in the US but of English/Irish/Scottish and German heritage. It seems that CLL prefers these bloodlines.

[johnliston]

Steroids, Folic Acid, and Rituxan are the treatment they gave me for AIHA. My hemoglobin was 8.3 when it started.

john

[Goopteal in reply to johnliston]

Thank you. I was 11 at end of August & 6.2 now. Steroids and folic acid with the possibility of a transfusion. Tutu am was mentioned as a possibility. I just had a contrast CT scan for the lymph nodes. How did you do with your treatment?

[Goopteal in reply to Goopteal]

Correction Rituxan

[johnliston in reply to Goopteal]

I did OK with my treatment. I had 8 weekly Rituxan injections. First one took a long time to make sure I didn't have a reaction after that they took about 1.5 hours per injection. Prednisone started at 80mg and took 5 months to get off it. When they would lower the dose the AIHA would come back a little, but this is not unusual. This all started last January and now I'm still taking 1mg of Folic acid a day and get a Rituxan injection every 2 months for maintenance, but this will end sooner or later. And I'm doing alright Hgb about 14.

john

[Goopteal in reply to johnliston]

Thank you — may you continue to do well.

[mk2045]

You might have autoimmune hemolytic anemia AIHA which some of us CLL patients (and others like lupus patients) can have because of a protein on the cells of the blood. I don't remember the exact cause. This is determined by the Coombs test (as per my Mayo Clinic doctor) and I've had it twice. It can cause profound anemia. I was in the hospital for 6 days with it once and 3 transfusions. The next time we caught it early. No transfusion or hospital. I urge you to let your doctor know this is a concern. I was treated with Rituxan and prednisone and rebounded quickly but then went on Calquence to treat the CLL. So far I've not had it again. AIHA is treatable but it seems that not all the proper tests have been considered. Take care and be proactive about this.

[Goopteal in reply to mk2045]

Thank you —- This group is helping me to be more informed and advocate for myself. I wish everyone well. I have been told that one of the toughest things about cancer is knowing you have cancer.