About a month ago I noticed an irregular, sort of round/oval, purple and dark brown colored spot on my right wrist area. It was only about an eight of an inch wide. It scared me enough to get in with my Dermatologist that day, and he quickly said it wasn't a melanoma. He said it was a bleed under my skin, and not to worry that it would go away.
About five days ago I noticed the same colored and shaped area on my left forearm, this time about half an inch wide. With both spots they don't hurt to the touch and they aren't raised. This one is slowly fading from the middle out today. I used good old Google and it is highly likely that they are Purpura, and probably from low Platelets. I'm not positive, but considering our CLL I'd guess very likely.
I haven't called my Hematologist/Oncologist yet, because I don't want to seem like a worry wart and I will be seeing her for the six month on September 12. She has already ordered upper and lower CT Scans for other reasons; namely, my Spleen is over 20.5 CM and I did tell them i have some light pains down there daily. The MRI with contrast that showed the enlarged Spleen was taken a few months ago by a local Gastro due to high liver enzymes. I had sent that report to my Hemotologist/Oncologist in Boston (I live in South FL), and that had her add the upcoming CT Scans for my next visit. That MRI also showed a very large increase in number of Lymph Nodes and their sizes.
I'm now five and a half years in Watch and Wait. Any input from those of you more experienced would be appreciated. Do you think the Purpura is a significant symptom, that might encourage my CLL Specialist to finally suggest starting treatment. I have been hoping not to start treatment, ever if possible, but I know that is not likely. Anyone else have a progression like this. So far I don't have another Purpura since I noticed the new one on my left forearm.
Carl
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wizzard166
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Thanks for the reply. In all likelihood you are getting easier bleeds due to lower levels of Platelets. Mine are in Normal Range, but Normal is between around 150 and 400. Mine is 159 and thus in Normal range, but still that is very low Normal. My guess is when they get down close to the low of Normal, we start to bruise more easily and bleed more easily. In any case for both of us, it still is at a safe level.
Hi I’ve have just been to see my Doctor as I have a bruise on my forearm it’s not painful and I don’t remember knocking it I’ve had it for a month now. The Doctor has referred me to see a Dermatologist. I’m W&W Which will take a few weeks or so.
Thank you Pekingese for replying. I'm a bit surprised your doctor sent you to a Derm; especially, if the doctor was a Hematologist/Oncologist. Even a GP however should realize that it wasn't a skin cancer or other skin condition. I ran to a Derm with the first smaller Purpura, because I know that CLL if it spreads tends to promote skin cancers. I wasnt sure by the shape and color of the smaller area, if it was a subcutaneous bleed or maybe a Melanoma. My Derm smiled and said I could relax, and that it was only bleeding under the skin. Anyway alls well that ends well.
The GP took photos to send off to the Dermatologist, I know with CLL we have 30% more chance of getting skin cancer. I have asked to see the Hematologist yearly to get checked out. Thank you for replying back to me. And I’m glad it turned out ok for you ☺️ Ros
You may want to phone your Hem/Onc and ask them to prescribe a CBC+ diff through LabCorp or Quest and then go to the nearest office of that provider in South Florida, they and you will be able to read the results on the patient portal for that lab provider.
That would reveal whether you have low platelets that need attention before Sept 12.
(Those of us over 70 on a BTKi like Imbruvica or Calquence often look like we lost a cage fight with big purpa spots and scabs /bleed on our arms- just from normal day to day life).
But since you haven't started treatment yet, it may warrant a quick blood test.
Thank you for the input. I was tested in June and my Platelets were 159, and although that is low it is still slightly above the lowest number for normal range. With the Boston visit a little under two weeks away, I figured I'd wait for the blood work on September 12. My thinking is that only one larger area now, after the one small one a month ago, isn't too bad yet. If I started seeing a bunch pop up I'd be very nervous and run to be seen. Even though the 159 platelet level is still at the low for normal, still I figure we all are different in how that would relate to clotting ability.
I'm extra sensitive to this issue, because my Father had CLL and he bled out internally. I blame the miserable HMO plan he was on for not being followed carefully enough, but I've gotten over that. Still I figure that with the obvious genetic connection through my Father, maybe my genotype with CLL makes me more predisposed to Platelet related bleeding issues. I think my Spleen being enarged a lot also has something to do with decreasing Platelets, and it will be interesting to see how the September 12 levels compare with my June readings.
Monday I had CTs of Chest, Abdomen, and Pelvis. Tuesday the blood work followed by my meeting with Dr Jennifer Brown. The Platelets were 131, so she wasn't concerned and felt the one recent half inch area on my arm might even be from my continued daily taking of a baby aspririn.
The major concerns of Dr Brown, which led to two recommendations on treatment, were my bouts with upper respiratory infections , the massive increase in number and size of lymph nodes, and the pains in my abdomen (likely from the enlarged spleen). The CT of the abdomen and pelvis was filled with large white circular areas, looking like a very heavy day of large clouds, and were the lymph nodes. All of them were increased in size from my CTs in 2021, like from 4cm to 7cm or 2 cm to 5 cm etc.
She said it might be smart to start IVIG now, and also said it wouldn't be premature to consider starting treatment. I balked at both. I said that starting IVIG would be like a permanent change in my life as I've known it, and almost like giving up. She asked if it wasn't better than risking more and perhaps dangerous to life Pneumonias. I agreed on that issue, but wanted to hold off to see if I reduce the incidence of URI. I said that I wanted to hold off on treatment until next year, because of the change in Part D costs I reported on this site, and she wasn't thrilled but agreed we could wait until my next visit on March 5.
Ive read so many accounts on our site of people having so many very unpleasant side effects, though not deadly, when starting any of the Novel Targeted Theraputic pills. She also told me that the immune system will weaken when we start treatment. So I'm hoping to hold off on treatment, but also realizing that I might be fooling myself.
Platelets under 100 usually get the doctor's attention, possibly a sign for starting treatment, unless it is consistent / steady there for many months. But under 50 usually requires urgent action.
My platelets are great but I get them on my arms and shins. All I have to do is brush against something. My arms would get this way by carrying a plastic grocery bag on my arm. I seem to have a new one pop up before the others go away. My cll specialist said it's nothing to worry about.
Much thanks for your input. I see my Specialist for the six month visit September 12, and this time she wants me to have CT Scans top and bottom the day before that. I guess the Spleen been so enlarged, and I mentioned pain daily in lower abdomen, she wants to see if its larger; however, obviously she also wants to see the proliferation and sizes of the lymph nodes. I'm anxious because I'm about five and a half years watch and wait, and I don't want treatment if at all avoidable. I didn't tell her about the Purpura on the arm, because i'm afraid I'll push her over the edge on a decision about treatment. On the other hand I don't want to be stupid, if the fact I'm now getting these Purpura is a dangerous signal. Thats why I asked for input on our site. It relieves me a bit to hear from you that your Specialist wasnt concerned about the Purpura.
I was diagnosed 4/2016. By 12/2016 had to have treatment. It was chemo and my body could not handle it. All my numbers dropped below normal. By 11/ 2017 my hemoglobin started dropping again. Feb 2018 I started on Imbruvica. My numbers are good ever since. I take a capsule a day. There is so many new drugs also. I wish you the best.
I have had these off and on since on W&W, have a fading one right now. For me, normally on my right arm -- this last time was scary looking, a whole batch, but it was immediately after I stuck my arm through a cage to get out a big tomato, so I obviously scraped my arm and I guess my skin's now that fragile. I keep photos in case doc ever wants to see, but learned they fade away just like a bruise. Last check (last April) platelets were lower than I'd like but still within normal. Will have another check in a month. But I've had these when platelets were still higher.
No treatment ever was my desire as well, I did 13yrs 8mos in W&W. I knew my type was the intermediate version & that I would most likely need treatment at some point. 2009-2019 my WBCs were 20s but by 2020 (when Covid hit the world) my numbers started jumping & I felt it. I felt sick & moved up my 6 month appt (even tho they always wanted 3-4mos but I never complied). Anywho I was right the WBCs were 35 & by Dec 2020 I demanded a PET Scan. Sure enough Spleen & Liver were growing only 12->14cm but I know this body & I felt it. By 2021 (I got Covid with a Cytokine Storm & it felt like imminent death but somehow I survived)I felt a sharp change in my health & sure enough WBC were 45 & Ultrasound showed lymph nodes growth. By 2022 I had a bad Sinusitis that lasted 6 weeks with 2 different antibiotics. By Oct 2022 my WBC doubled 45/49->89 & I was stage 4.
That Sept 2022 CT Scan showed multiple water balloons throughout my body & I went 100% Plantbased Organic, RAW & Juiced. Then I was able to tolerate food because without the change I was headed for surgery from horrific abdominal pains. I got a new Oncologist Team & started treatment in April 2023 with Zanubrutinib. I had Pleurisy by the 13th day of full dosage that was allowed to progress to Left Pleural Effusion, Pneumonia vs Aetelasis. I switched to Acalabrutinib 1/2 dose for 10.5 weeks until the under treated pneumonia turned into Pulmonary Edema & chestpain again for the 3rd time & palpatations. I went back to Zanubritinib since it has the most flexible dosing schedule I knew of & took only 80mg per day. Plus got a full 10 day dose of Antibiotics that none of my Onc or Pulmonary team would prescribe altho I have good federal insurance.
Well now I am much better on 80mg of Zanubrutinib, its working & my Lungs & Heart are healing. In retrospect I have multiple drug allergies so My body does not do well on Western Medication so it pushes me to do more Natural Remedies. The advice I got here was to start while you are still strong & can decide for yourself. You want to have a say in the treatment you get before you hit any critical levels. Plus you don’t know how quick you will be able to get the medication once you do say yes & if it will work for you, so use your time wisely. Also I was told to make sure they don’t over medicate you. And the last piece of info here that stuck with me was that one woman said that she started the BTK Inhibitor, within 2 weeks she was feeling so much better & put CLL in her rearview mirror & went on with her life. And that is where I am now, about to hit my 6 month mark Oct 24th & even though the first 3 months were rough because the doctors would not listen to me, it feels good to be easing into home base. I will go to half dose 160mg when Cardio & Pulmonary 2nd opinion doctors clear me but full dose probably never.
Hgb 10.8->9.2->11.9, Plts 76->40/108->92, WBC/ALC 81->18/118->23, starting numbers, best/worst & yesterday’s numbers. I am stable & back to light activities. Also pushed back every 2 week blood work to monthly & face to face to every 2 months. Got a CLL Specialist now too! #GODSPEED🙏🏾
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