Advice please

[Mamawof25]

Sorry I have some questions that maybe you can answer. The nurse asked me as she always does at my last appointment on the 13th if I had any pain and yes I do but I have a high tolerance for pain. So this pain is there I can feel it and I it hurts but I tolerate it. It never stops. My labs show low platelets, high red cell distribution width, high AST (SGOT), high Ferritin and high bilirubin. I have never received the results of my fish panel which was on March 21st. So when I saw the doctor he made me feel like he was only pacifying me since I said I had pain but hey the nurse asked. He gave me 3 options 1 chemo 3x a week for 6 months-that could cure it, meds for life but could speed up my heart and not cure it, and a mixture of meds and chemo. But he made me feel like he really was only saying that to pacify me for saying I had pain. Today it is bad and the pain has also started under my right arm. I called the nurse and she said I was symptomatic and may want to think about treatment. But I really don't know what I should do because I really don't know what to think.

[Flabal]

Hi Mamawof25. I don’t know how helpful I can be. I don’t quite understand all the results u mentioned. But I understand the pain. I have pain. Not unbearable but I do. And I also have a wbc of almost 400 and my red cells are low and getting lower.

Chemo is knocking on my door. And here only FCR is available. What my doctor told is that there are only a certain amount of bullets and that once we start using them then sooner wee run out of options.

My intention is to try and delay for as long as possible so I’ll live with pain and discomfort if necessary.

Only you know what u think is the right course of action for you. And honestly your doctor should help you decide.

[Cllcanada Top Poster CURE Hero in reply to Flabal]

There is a window of treatment in CLL and you don''t want to miss it. I feel in most cases patients need to get a second opinion from a hematologist at a large research hospital, running research and trials in CLL.

This often clarifies the road forward, might present new treatment options... and gives additional peace of mind.

~chris

[1ofakind in reply to Cllcanada]

How do you determine window of treatment ?

What are the consequences of “missing “ it?

[AussieNeil Administrator in reply to 1ofakind]

The triggers for starting treatment for CLL in management guidelines include allowance for some buffering of platelet and haemoglobin drops that typically occur with treatment. If you delay treatment too long, i.e. slip past that window of treatment, then you are at higher risk of anaemia related damage (below 6 you risk organ failure) or bleeds/haemorrhaging from extremely low platelets. That can be countered by transfusions, but these aren't without risk and your body is still faced with the additional challenge of recovering from low oxygen supply, repairing tissues damaged from bleeds and so on.

[1ofakind in reply to AussieNeil]

Thanks much for answering so quickly and clearly!!

[Mamawof25 in reply to AussieNeil]

These are my labs from today. Manual Diff: Ellictocytes 1+, Poikilocytes 1+. CBC with Diff: Eosinophil 23%, Eosinophil Absolute 1.2k/CMM, HGB 11.8, PLT 136. CCP Complete Chemical Profile: Anion Gap 3, Alkaline Phosphatase 120, SGOT (AST) 41, Chloride Serum 109. Last week my Ellictocytes was 1+, Eosinophil was 6.0, PLT was 135, and Bilirubin was 1.2 mg/dl. Does these look bad or getting worse and or should I worry? My oncologist is not a dedicated CLL specialist.

[AussieNeil Administrator]

While you haven't had your diagnosis that long, it seems that your current medical team aren't helping you to the extent you desire in being an informed patient. Finding out more about what your CLL is doing to your body can certainly help you feel more in control and will enable you to share with other members in a similar situation so you don't feel so alone. You've already highlighted areas where you obviously need to be provided with tests you have paid for and your medical team's interpretation of those results:

1) Your FISH results can give you an indication of your likely course with CLL and are critical in determining what treatment will work well for you.

2) WHAT specific treatments is your specialist considering? I suspect he is only talking in general terms, but he seems to have considered both chemoimmunotherapy - presumably FCR given the cure comment (the 6 month course) or Ibrutinib. It's not clear whether he had your FISH results in mind when he mentioned treatment options, but if he did, then that would indicate a low risk FISH result, i.e. a long time until treatment is needed.

3) You've mentioned needing iron transfusions. Do you know why these were needed?

4) A high AST can be indicative of your liver not working effectively, but there can be other causes. How high is your AST and has the cause been investigated? It could be due to medications you are taking that perhaps need to be changed or even over the counter medicines or supplements.

5) What's causing your pain, where is it and how long have you had it? You've mentioned it now starting under your right arm, so perhaps that pain is due to a swollen lymph node. Is swelling obvious? Have you tried a heat pack to see if that eases the discomfort? One of the triggers for starting treatment in the latest iWCLL guidelines is "Massive nodes (i.e., ≥ 10 cm in longest diameter) or progressive or symptomatic lymphadenopathy."

I think getting answers to those questions will help you think through what you need to do. That might mean asking elsewhere for a second opinion and perhaps finding a medical support team that will work with you!

Neil

[TimHB]

I'm no doctor. But like you, I have a high tolerance of pain and I'm careful to always explain that to the doctor or nurse. What I may grade as 2 on the pain scale, others may say 7 or 8. Doctors and nurses are trained to understand what we're saying and what it really means so be open and honest. That said, I think your pain may be symptomatic that you might be ready for treatment - like I was. No doctor would offer powerful drugs or chemotherapy if you didn't really need it - they would never offer that to simply placate you. I was considered for BR chemo but then got into a clinical trial with obinutuzumab (Gazyva) and ibrutinib and so far it's going very well - nothing to be afraid of. They expect up to 10 years of remission, but I'll have to take the ibrutinib for life.

[New1948 in reply to TimHB]

I start on Gazyva next Wednesday at the Mayo Clinic in Florida. After 3 cycles of G they will evaluate MRD. If positive then I'd be eligible for trial that would include ibrutinib after 6 cycles of G. Was told that the Ib would run for 2-3 years. If for some reason I don't qualify for trial I'd still be put on Ib. Very confusing. Wonder if you are in that trial?

What side effects have you experienced?

I went to Mayo for second opinion after my local hematologist recommended BR. I was skeptical about chemo.

Adverse Risk factors include:

Age 70

Trisomy 12

Hg 8

Ab neutrophils < 1

Platletts about 100

IGHV unmutated

BMBx 80% infiltrated w CLL

WBC has dropped from upper 25K to 18K over last 4 weeks???

49d expressed on 100% of CD 19??

Notch 1 and PTPN11 mutations

Generalized lymph nodes enlarged less than 3cm

Some recent infections

Fatigue

[TimHB in reply to New1948]

I'm 60 and was diagnosed in February as Stage II unmutated BMB 70%, told I've had it since 2014 but didn't know it till the symptoms bloomed during the past year. The treatment you describe sounds slightly different than mine - I started Gazyva and ibrutinib simultaneously, 9 infusions over 6 months (weekly for first month, monthly for 5 months) and 420mg of ibrutinib daily for at least 3 years before re-evaluation, but may likely take it for the rest of my life. This is the protocol of the clinical trial at Moores/UCSD in La Jolla California under Dr. Kipps. Everyone responds differently but I had a strong reaction in the beginning - first 2 infusions gave me a massive and powerful "hangover" that struck me 24 hours after treatment and lasted 36 hours during which time I was bedridden and incapacitated. But that meant the treatment was working so I welcomed it, as unpleasant as it was. I'm told my lymph nodes and bone marrow were exploding, releasing all the bad CLL cells and my good cells were attacking them, fighting overtime like a war of the worlds inside my body. My WBC and lymphocyte counts have skyrocketed, but that's normal in the beginning. After the 3rd and 4th weekly infusions I had the complete opposite - a rush of energy that lasted about 3 days making me feel better than I've felt in decades - like I was 19 again! Then I'd settle back into my normal state. But after 4 infustions, all my symptoms - pain, fatigue, weight loss - are vastly diminished and I feel much better overall. I hope for the same for you. Maintain communication with your doctor throughout and don't be afraid of it. No pain, no gain!

[annmcgowan]

Hi sorry to hear you are having pain. I agree with CLL Canada and Aussie Neil a second opinion should help with the treatment decision and guide you toward alternatives to chemo. I did this and it worked for me. Keep us updated.

Ann

[Momlyn]

Definitely seek second opinion at a research hospital. I found out there are some hematologist who don’t put much weigh on FISH results. I insisted on knowing my results. I’m 17p deletion, meaning chemo does not help, sometimes makes worse. Glad I sought second opinion. Am signed up for a clinical trial, that looks promising. My prayers are with you. All the best.

[ChristineAM]

You don't say how high your ferritin level is. You can have a separate condition called hemochromatosis if your ferritin level is too high and remains high. The Mayo clinic says: 20 to 200 nanograms per milliliter in women is the normal range.

This condition is not a major problem if the ferritin levels are checked periodically and you have a phlebotomy when they get too high. However, if you have this problem and don't get it "treated" by blood removal, your organs may be damaged.