I have a basic question for any of you with experience related to a growing spleen. I realize all of you have growing spleens, so I mean those whose spleen size is now possibly creating an issue.
Very recently I had an MRI with contrast of the abodomen. during my six month visit with my CLL Specialist in Boston, she noticed that the ALP and the two other liver enzymes were too high. She also mentioned that my spleen was now palpable. She suggested I contact my Gastroenterologist when I got back home (I live in Florida). I called his office and he ordered the MRI without needing to see me
Of the entire report these are the things of concern: Liver: The liver is within normal limits without focal lesion. There is mildly prominent at 17.9 cm. Spleen: Spleen is enlarged measuring up to 20 cm in size. However, there is extensive mesenteric adenopathy which appears to be progressed from CT from February 2021. This is seen in the root of mesentery with conglomerate lymph nodes seen measuring up to 5 cm in size. It is also portacaval and porta hepatic adenopathy. Portacaval lymph nodes are noted 3.3 cm.
I have been having pains in the abdomen lately, with less feeling of eating much. I have not mentioned this to my Specialist, because I'm thinking it could be my nerves making my stomach hurt, and I don't want to encourage a decision to start treatment earlier than necessary.
I have two specialists; one locally in Boca Raton FL, and one I consider my team leader in Boston. I actually see each of them every six months, so in actuality I see one every three months. The one in Boca called me personally and said she was concerned about the lymph nodes, and asked if I was having symptoms. I said I didn't want to start treatment if not absolutely necessary. I see her anyway soon in June. The one in Boston had her Nurse call me, because I had messaged through the patient portal about the report. The Nurse said the doctor saw the report and was alright to wait until she sees me in September. I asked about the 5 CM Lymph nodes, because think I've read that when growths are over two CM in size they are usually cancerous. She said the doctor felt that the sizes were not too much more than the test in 2021, and my HGB and Platelets were still within acceptable range.
I'm wondering if any of you have input on both the Spleen and the Mesenteric Adenopathy. With the Spleen I'm wondering what happens if they decide to remove it. Don't we need the Spleen for normal functioning? How bad a surgery is it? Nothing has been said to me about removing it yet, but I'm anticipating this discussion not too far down the road if the pains or other symptoms increase.
I understand I need to listen to my doctors and follow their recommendations, and I know we can't give each other medical advice that should be followed, but I'm looking for input from my friends.
Carl
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Good Morning Carl,This is what I think from my experience. My CBC numbers or lymph node size did not drive me to treatment. Neither did some fatique, feeling crappy all the time. What absolutely gave me no choice but to treat was my spleen.
For a year it had been bothering me. It started with a stitch in my side. Then I started to loose my appeitite, then I lost weight. Mean while spleen discomfort went from my being able to ignore it. To my having to be very careful what physical activity I did. My quality of life suffered and the spleen then caused pain from my left stomach to upper rib cage and wrapping around to my left back.
I was seriously concerned about laceration or rupture. It was really uncomfortable and I did not want to loose my spleen. Its an important part of our immune system!
Spleen removal for enlarged spleen symptoms in my opinion. Is like head removal because you have a migrane.
I knew treatment would eventually make the bad symptoms disapate, and it has. I still have some pain if I over do it. But I am eating, gaining weight, have more energy etc. Another few months it should be normal.
I am not a subscriber any longer to avoiding treatment. When treatment can remove a multitude of problems.
Please report these pains to your specialist. Whether or not *we* think a symptom is CLL related, is not for us to decide. Report any/all symptoms, let the doc decide what may be relevant. If you are having headaches, strange stuff on your skin, pain in other organs, problems with teeth/gums, whoever it is wants to know all of it. Let them decide what is relevant. Nodes without pain are one thing, even small nodes *with* pain, are another. We all have various symptoms throughout our life, but they can be aggravated by our CLL. So please mention everything.
There have been a few posts here recently of people having bowel problems because of internal node growth. As well as a recent post re:spleen rupture. I know of a person who had IBS type symptoms, to where surgery was recommended. Treating the CLL cleared up the bowel problems, no surgery needed, it seems the CLL affected nodes caused the GI issues. There's been several posts of people having an actual bowel blockage/multiple nodes affecting their bowel.
It would be more likely your CLL would be treated versus removing your spleen. The days of "removing spleen when it's enlarged" being the #1 thing to do, are kind of gone. Docs look for reasons why the spleen is enlarged, and treat *that*. Your spleen is likely enlarged due to the CLL, I am sure your docs will be in agreement treating the CLL would be the thing to do instead of just removing your spleen.
Your doc in Boca specifically asked if you are having symptoms. The pain is a symptom, tell them. Tell your specialist. If you are a candidate, there is Phase 3 trial out now that is *paying for the drugs* if costs are a consideration.
Thank you Sofia for the input. I always have a feeling of fullness in my abdomen lately, and some discomfort, but I'm a person who lifetime has had issues with my abdomen hurting if I was upset. It was horrible when I was young, but even in these years I feel something when anxious. So I'm not sure if the slight pains I'm feeling are the Spleen now sticking into the abdomen or my old gastro issue. I have been pretty upset lately about a different problem, so I'm thinking it might be that.
I really have an aversion to starting treatment, because until I do it seems I'm not really sick. Also once I start treatment, from reading many posts, it seems like its the beginning of the road to more problems from side effects and also a rollercoaster of some success in beating it back to anxiety over finding which new treatment to try when it comes back.
It is also true that the cost of treatment is scaring me a bit. I of all people know it is about $15,000 per year for the medication (I enroll people into Part D Rx plans, so I'm quite knowledgeable with that end of things). That will truly cramp my lifestyle, so I'm hoping I can last until Biden's new law goes into effect for Part D Rx in January 2025. In the last half year I've honestly thought to myself that I just have to make it without treatment to January 2025.
You mention a Phase 3 Trial that pays for the cost of the medication, which could be attractive, but the last thing I want to do is take a risk on a medication that might not be shown to be effective yet. The other thing, although I'm not sure of this, is that people in trials are put in groups of those that get the medication and those that get a Placebo. I'd never do anything where I wouldn't actually get the medication, and instead get a fake pill. If the type of trials you are referencing never use Placebo, then that could be an idea depending on how much proof they have already that it is safe and effective. I'm also a patient of Jennifer Brown, so that might give me an edge with trials she is involved with (once she decides I need treatment).
I'm glad you replied; I truly respect your level of knowledge with alot of this.
Carl, these Phase 3 trials are using the already FDA approved drugs. It's generally a Phase 1 or 2 where one is using an "unproven" drug. That's part of the definition of a Phase 3 trial, it uses already known drugs. So one may get any specialist or test/scan copays paid by the study, in addition to the drug. To make it worth our while for all the testing, we get copays paid but not usually any already FDA approved med. Plus there may be funds from the American Cancer Society and others for travel expenses, sometimes they run out of money for a year, you have to ask/apply. Sometimes a local hotel will give a reduced rate.
These Phase 3 trials are where we get data saying which drug combo might be better than another. It's unusual in the US for these studies to actually pay for the drugs, which is why I am mentioning this on HU a lot lately. Also in these trials, if you wait until certain parameters are compromised, you don't qualify. You generally can't wait until you are too neutropenic or anemic or whatever, they won't take you. So one can't wait until you are "too sick". You have to be sick enough, but not too much.
Cancer drug trials do not often use any placebo, regardless of phase. Any trial using a placebo is very, very clear and up front about it. People go over the pages and pages of documents, and make sure you understand exactly what you are getting into. And if for some reason you get partway through and want out, the docs aren't particularly happy but no one is going to take you to court or put you in jail for deciding to drop out.
The trial I am referring to is linked below. Ignore where it says "Jacksonville", you may not need to actually go there, that's the office of Florida's principal investigator. I am sure someone in Boston is doing this trial too. However, since one arm is V&O, it may be easier to be in-state for the O infusions. Either your Boca or Boston doc could contact whomever on your behalf, if you are interested. And you would need to get a bunch of tests to see if you qualify, after the long discussion and pages of documents you go through, called Informed Consent, before you would start any treatment.
."Spleen: Spleen is enlarged measuring up to 20 cm in size."
This is my personal "time to treat" sign, even if I was fully asymptomatic otherwise (which you are not). I was diagnosed in 2020 with a 13.7cm spleen, which has now grown very slowly to 14.5 cm. But I will not let it go past 20cm b/c that's when things can start to go downhill fast, even if you don't have symptoms. It gets fragile and in the way of SO MANY things...
So, if it helps, I'm one who wants to delay as long as possible, but not at the risk of future health...and I think you might be just about there.
Thank you Misfit for joining everyone else in communicating with me. This is my first post in which I'm actually concerned a bit about what is happening and where this is going. Since I've been somewhat of a worrier lifetime, I supposed I still have a decent amount of time to deal with either treatment or further symptoms that encourage me to seek treatment.
I'm gathering that the 20cm is some kind of true marker with Spleens and CLL. Maybe that is why the Specialist in Boca called personally when she saw the MRI report. My Specialist in Boston hasn't showed any concern yet, and I know on April 5th she was headed on a two week trip, but one of her Nurses did call after I messaged in the Portal. Basically she said Dr Brown wasn't concerned yet.
I agree however that a change for me is somewhere around the corner; I just can't see it yet.
Since you weren't reporting your pain symptom, docs would be less worried. Pain is an indicator that "something is wrong" and this changes things. Your doc in Boca sounds like they are double checking, because spleens enlarged along with internal nodes may often be accompanied by other symptoms. Like your pain, which you hadn't reported.
It can take a few months for treatment to start, even if not on a study. This is not like going to the docs and getting a prescription antibiotic for an infection. IMO it's better to select a treatment, and get any testing/insurance approval done and out of the way. These drugs often need a Prior Authorization, and oral meds have to go through a specialty pharmacy. The drug companies have free drug programs, which don't go through Medicare. I qualified for free Venclexta. I needed a Prior Authorization to be approved through my Medicare plan, but the drug was never submitted to Medicare. The drug company has a contract with a specialty pharmacy and the med came from them. This took a month to set up. I received the med, but did not start it for another month. There's at least one person here whose insurance company took an extra 3 weeks longer than the approval process generally takes, and unfortunately she happened to have gotten worse quickly in those 3 weeks. And had said in retrospect, she wishes she had started the process sooner.
Without a CT scan to see *if* you have any large internal organs close to pressing on something, or a Bone Marrow Biopsy to verify amount of bone marrow involvement, you can't say for sure how advanced your disease actually is. These tests aren't always required before *starting* treatment, but are the only reliable way to say for sure how much your bone marrow and internal organs are actually affected. You can't say for sure you can hold out until 2025. Some people don't get symptoms quickly, of course, but there's no way to tell ahead of time who does or not. I had a Bone Marrow Biopsy. My marrow was almost completely infiltrated even though my bloodwork outside of lymphocytes was normal. My local hem-onc agreed that it was probably smarter to look to start treating sooner, and not wait until my marrow started failing other cell lines. It took me 4 months to select a treatment & start it, and I was trying to move the process along.
So why not check out the MAJIC trial? If you aren't "sick enough" to qualify you will learn this. As well as, if you are "too sick" with compromised liver or other organ involvement, or have a low grade infection like CMV you may be unaware of. And if you decide it's too far to go, that's fine too. But please consider reporting all your symptoms, and getting better assessment of your disease, instead of trying to push everything off for another 2 years.
Spleen at 20cm is where I started having more serious issues. But everyone's a bit different in size, location of spleen, and location of pain. So being precise about where your pain is coming from is important for you and your clinician.
I had pain just below the left rib cage, fairly sharp, 4/10 for a while. That was the spleen growing past its usual boundary. It jumped to 7/10 and moved down and to the left last November. Ended up hospitalized for spleen laceration and "infarction" (dead spots within the spleen, likely due to outgrowing blood supply).
I did have some shortness of breath and loss of appetite as well, but not catastrophically so. Pain was my main indicator of issues.
I also had some abdominal lymph swelling, detected via CT and not obvious from physical exam. But that was secondary in my case to the spleen issues. Different people have different accumulations of CLL detritus. YMMV.
This was treatable, but had I let it go longer, it might not have been.
And that's I guess the main takeaway - they can temporarily reduce the spleen with steroids or surgery, or remove it entirely (rare these days). But the best bet when it starts to create health problems is to treat the underlying CLL.
Spleen removal is not a good idea - you can live without one but infection risk is higher, not good for CLLers. And spleen ruptures are definitely not good. Growth of the spleen by itself is one issue, but the main issue is if it is peeking out from behind your rib cage it is much more vulnerable to trauma.
I did get to 22-23cm by the time treatment started. But treatment has helped. I feel better and spleen was reduced to 18cm at 3 months and further since. Though it is bugging me quite a bit today.
Thank you Scryer, and yes your input on the Spleen is matching virtually all input. Don't remove the Spleen and start treatment instead. When I read in the various inputs to my post that spleen removal can further reduce ability to fight infection (which I'm really curious why that happens), it cured me of any interest in Splenectomy. I know that the end for most of us with CLL is Pneumonia, and I personally have had four or five Pneumonias in my lifetime, so the last thing I want to do is reduce my immune system any further.
I read on these pages that there were some cases of ( if I remember correctly) mutated patients, who underwent chemotherapy and had their spleen removed, went into spontaneous remission and got cured. Not sure how many such cases exist.
Role of splenectomy in chronic lymphocytic leukemia
(From 1997 - before Dr Keating developed what became the long standing gold standard FCR treatment for CLL. He's not the only well known author of this paper from past PMD Anderson CLL specialists either.)
Conclusions: Splenectomy significantly improves survival in selected subgroups of patients with advanced-stage CLL over that achieved with conventional chemotherapy. Based on these results, splenectomy should be performed early in the course of the disease in CLL patients with either an Hb < or = 10 g/dL or plt < or = 50 x 10(9)/L.
The best known long term survivor from back then, who underwent a splenectomy to treat his CLL is Glenn Sabin of N of 1 fame. Perhaps he doesn't give his splenectomy sufficient credit for aiding his long survival.
I've known about the pro-survival benefits of splenectomies for CLL for a few years, as well as the fact that some well known authors were involved in this 90s research.
There's been a long standing link between Australian and US CLL research; Dr Michael Keating relocated from Melbourne to M D Anderson in Houston, Texas and later, Professor John Seymour returned to the Peter Mac Institute in Melbourne Australia after a stint at M D Anderson.
As usual, there were earlier mouse model studies showing the potential. Thankfully CLL treatments have improved so much that splenectomies are no longer done to treat CLL, but they are still used as a fall back option for Immune Thrombocytopenia and Auto-Immune Haemolytic Anaemia when other, less invasive approaches aren't successful.
I had my spleen removed in 2017 after treatment failed to shrink it. At the time, my oncologist would not give me ibrutinib due to a history of arrhythmia. I am now taking Calquence with amazing results. Had it been available earlier I would probably still have a spleen.
Bendamustine plus Rituximab is recommended for those 65+ while FCR is recommended for those up to 65. Provided people are reasonable fit, they can manage BR when well over 70. But yes the newer targeted therapies are easier to take than chemoimmunotherapy for those of us who are older.
I was 71 years old when I had B+R, which gave me about 4 years of remission. I was unmutated and chose B+R over ibrutinib due to time limited treatment. Treatment gave me a new lease on life. Blessing going forward.
I find it so amazing how differently we all present. Yes I am on the boat for no treatment but it sank as I watched my Hgb/Plts numbers drop & WBC quadruple. This group made some valid points; 1) CLL treatments are much tamer than the horrible chemo patients I seen as an RN 2) When you feel ready things don’t necessarily happen right away 3) You want to be strong enough to withstand the punch that the meds could give you so you need some reserves 4) What you choose or qualify for may not work & you need more time to find the right combo 5) If you see your decline & still don’t want treatment then set up for Hospice.
I started today on Zanubrutinib after 13yrs & 8 mos of Wait & Watch. My idiot doctor who harrassed me for 6 months to start therapy said to me after I finally agreed ‘Well if your labs are too good then insurance may deny my request’. I told him oh no, I qualify & we are gonna do this now. Sure enough the bloodwork was where it needed to be. The pharmacist called me the next day to say Aetna approved this ~$13,000 per month med with a $700 copay. Pharmacist called the next day saying I got a $25,000 grant & it will cost me $0. I said well they want me in this indefinitely & she said that it will be renewed each year. I feel fine but I took it easy & stay hydrated. This group also suggested to start during the week because within 72hrs any severe side effects would show itself & I can run up on my doctor. Such wisdom right here!!! Best of luck because its not an easy decision #GODSPEED🙏🏾
Thank you for contributing to my quest for information. I'm having some mental issues now, since I reached age 76 on March 30th. I realize my life is now in the 4th Quarter, time is running out, but I'm not yet at the 2 Minute Warning. Please excuse the Football terminology, but it seems to really fit. Even if I wasn't fighting this illness, just the waning years and months would be hitting me anyway. Now I feel I'm entering a new phase of things with the illness, although my overactive mind is likely overreacting, I developed a new awareness with the "Palpable Spleen" comment on my latest six month visit. Then the MRI of the Abdomen mentioned the large spleen, and the more I read I realize that just the Spleen growth itself may lead me to treatment I've mentally wanted to stay away from.
This site has been wonderful for me, in that if makes me realize I'm not alone. It also is such a fabulous source of knowledge and education, but it goes way beyond that. It connects me with others who have been through everything that could be ahead for me. It also gives me a chance at times to contribute to newbies with my more limited knowledge base, and thus makes me feel helpful. It truly makes me feel good that you are a Nurse, because I know your knowledge base is excellent too in ways related to and unrelated to CLL.
Yes this group is spot on. And all that brain issue stuff was me wrestling with hoping this would not be my reality, maybe I could be part of the 30% that doesn’t need treatment. I know I did everything in my power, dropped 90lbs, went 100% Plantbased, Exercise Daily, 1 gallon of water & 6hrs of sleep (even with insomnia). My mind has been racing but this group had me consider something I never did as I slowly declined over 14yrs & that is a possibility of feeling better. These new drugs have so much promise & I am here to test it out. I will still keep up my Natural Remedies, Supplements, Exercise, etc but let me see what all the hype is about. And honestly I hate pain even with my multiple job injuries & surgeries; Bilateral Total Knee Replacements 2010/2012, Bilateral Torn Rotator Cuffs with only right Arthroscopy 2014, Cervical Lumbar Radiculopathy & Sciatica I hate pain. So weight loss & exercise is needed to maintain this damaged body. Exercise is my cure all & excellent for your mind. You do have control as far as to choose, but choose wisely. #GODSPEED🙏🏾
I have splenic marginal zone lymphoma, not CLL. I spend a lot of time in the SMZL forum on Facebook.
One of the symptoms that triggers treatment in SMZL is feeling inappropriately full when eating. That is a sign of the lymphoma and the spleen size.
Some people start losing weight and have other symptoms like fatigue and the b symptoms at the same time. But the fullness tends to be the start of when things are going to get more problematic. And doctors will start treatment.
In SMZL, removal used to be the main treatment. Not any longer, now that there are other options. The spleen is a big fancy node. So treating the CLL to reduce the nodes will likely reduce the spleen. Just as a preemptive idea, it takes longer for the spleen to go down fully than it does for nodes to. Spleen's develop additional blood supplies and they're more dense, so it just takes longer.
So while you're worried about it being a stomach upset and not related, it's worth telling your doctor because it is also symptom of an enlarged spleen. For me I stopped being able to eat comfortably at 27 cm. It was when drinking a bottle of seltzer still hurt 3 days later that I knew it was time.
(Surgeon put removal risk for me at 1% - 2% death with the surgery. He called a trivial but I didn't think so.)
If you're at a point where you need treatment... Whether you treat or don't treat isn't going to determine whether you've entered that phase of needing treatment and worrying about such things.
I found that I felt better enough after treatment that I regretted not having done it a little sooner. Big spleens get in the way! There's also other symptoms even though I had little awareness, There was a level of improved energy and better wellness after. It also affects your immune system and reaction to bug bites and skin rashes and who knows what else. So even those factors improve with treatment that's working.
There is a plus of figuring out the treatment that's going to work, before the spleen gets big enough to make breathing difficult because it pushes on the diaphragm. I spent some time having to bend over to breathe on a later 4th round of treatment because we were having trouble finding one that worked for me.
So some thoughts from my experiences. If you do wind up needing spleen removal, checking out the SMZL forum is a good place to hear of surgical experiences, since some people oo for that (If first line treatments don't work.)
I have never been one to fail to bring up concerns with doctors, and perhaps sometimes too much so. Now I feel a little inhibited because I've mentally blocked out the idea of starting treatment being good for me, so I haven't wanted to mention the pain in the abdomen to my doctors. I realize I can't be stupid either, but honestly the pain and feelings of fullness after lite eating having been too bad. I have been thinking that if it was the Spleen, then the pain would be much worse. I'm guessing that even if it is the Spleen, and the pain isn't so bad yet, that i have plenty of time to let the doctors know of it.
The feeling of fullness wasn't that bad when I reached the point that it was time for treatment. It's not a sharp or particularly noticeable pain. It's a sensation of it being just a bother. It's worth bringing up to give your doctor a heads up that you're getting closer. Whether you have time depends on other factors in your case. This factor is subjective and in your control.One aspect when it stops being subjective, is if you start losing weight inappropriately for what you're eating. That weight loss can accelerate and go quickly. I've seen people talk about 20-30 lb losses and doctors rushing to put them on treatment within a week.
For SMZL, treatment is almost always initiated by the patient, because they know it's time. When patients are first diagnosed they'll ask the doctor when they should start treatment. And the doctor will shrug and say you'll know.
So It's generally not a problem to tell your doctor what's going on. Because he's going to wait until you know it's time to treat. And if he rushes sooner it's because of something specific he's seeing I can tell you about.
Starting treatment is a new phase. Maybe that's the question to bat around a bit. What's it feel like to start treatment and what are reasons to hesitate?
Thank you once again, for your input. I think I know that something is not totally right in my abdomen.
I don't know if you have input on this one, and I was thinking of another post, but my wife wants me to gain weight and I've for years hoped to lose weight. About a year and a half ago I was 252 and maybe two months ago I got down to 210 (I'm 6'0). I wasn't trying to lose weight, but I had been eating a lot less at all meals other than Breakfast. I also was being more careful with Carbs, but overall I didn't consider myself to be dieting. Recently I starting increasing between one half and one pound per day, and yesterday was 219 (these are all without clothes on).
I started moaning to my Wife that I had been gaining weight, and she admonishes me and says its good for me to put on more weight. She feels that if I start treatment, and when the disease is progressing, that I'll lose a bunch of weight. So she thinks it is wise for me to put on some more weight, in preperation for the time I start losing it. Does this make sense to you, or to anyone else who sees this reply.
I had a doctor say he'd rather I was a little over then underweight because of the lymphoma since it can have a symptom of weight loss. If it transforms then there can be rapid loss with that as well. I've wanted to keep just a little buffer. I have too much of a buffer, but I'm not aiming to get down to my minimal weight.
The treatments that aren't chemo, I don't think they normally result in weight loss. Sometimes maybe for some people a little loss. Then for the people who have lost afterwards complain that they gained it back and then some. During treatment with the steroids, I stay the same way, but as soon as I stop the steroids somehow I put on 10: l-15 lb every time. I wouldn't set my weight based on the treatments coming up unless you know that you're headed for chemo. I haven't had chemo so I don't know how that works.
Not really. Unless one is a hard core athlete, the "normal" ranges for BMI and bodyfat% are healthier goals than carrying extra fat. Treatment doesn't automatically equal losing weight. And weight loss *can* be a symptom of increasing disease, but not always. I tend to the "higher" end of the range, instead of staying slender.
I have a scale at home that measures bodyfat. The inexpensive ones won't be highly accurate, but will give you an idea if you have more fat than muscle. I have a Tanita brand that's well over 10 years old, I spent around $50 if I remember right. My doctor uses a more expensive one, and my cheapie is only a few points off.
Always glad to be communicating with you; I do admire your knowledge level.
I actually read something totally weird recently, because it goes in the face of everything we've all learned about weight and longevity. I think it was an email I got from AARP (I joined it recently after many years of actually representing them), and the headline caught my eye. It had something to do with lower weight not being better than higher weight in terms of longevity for us older set. I began to read it, and wanted to forward it to my Wife, but AARP doesn't have that feature to forward articles in their App. It did clearly reference research that showed that purposely losing weight in our age group did not increase lifespan; in fact, the article claimed it decreased it.
I was in shock, because it contradicts anything I've ever read or heard about losing weight being good for increasing lifespan.
TO ANYONE WHO READ MY LAST COMMENT ABOUT LOSING WEIGHT ACTUALLY BEING BAD FOR LONGEVITY, I HAD THE SOURCE OF THE ARTICLE WRONG. IT WASN'T AARP IT WAS CNN. THIS IS THE LINK
Thanks for this, very interesting. I plan on replacing the muscle mass I lost when really sick a few years ago, and lost 15 pounds in a few months. A lot of that was muscle. I am now back to the old weight, but it's more fat, my clothes don't fit the same, and I am uncomfortable. And can't exercise much, my skiing injury from last Nov is looking like multiple tears in one knee. I've been stuck in bed again, with near constant pain in it when I exercise or even do daily stuff.
I've lost muscle mass too, over the last year. I started back to LA Fitness in January, whose membership I kept for three years during COVID and didn't use, because I wanted to tone up and maybe increase some muscle. Then in February we took a one Month trip to the Philippines, so I could see a four year old Granddaughter I hadn't seen since age nine months, and had an accident in the bathroom. I was standing with back to the shower in a narrow bathroom, taking off pants, and stepped slightly backwards. My heel hit the tiny step leading into the shower, fell straight backwards into the shower wall, and slammed down on my rear end. My lower back pain was severe. We got home in mid March and to this day the lower back still hurts mostly when getting up out of bed in the Morning. It never stops having some aches near where the kidneys would be, but I imagine it is just old age with bad discs in the spine.
Recently I've been thinking about trying to go back to the gym again, but now with the Spleen thing I'm wondering if that could be a bad idea. I don't think I'd bang the spleen, but I'm not sure how any of the machines I'd use could affect it. Then too there is the back, but I guess I'd stay off the back machines.
Make sure you didn't get a hairline fracture? I broke my collarbone in my teens and it took a year to figure out I still had a hairline fracture, it hadn't healed properly. Depending on where an unhealed bone bruise or fracture is, anything "lower body" might aggravate it. Even core work. Pain after 2 months still = check to see everything is healing IMO. I just got MRI results yesterday from a late Nov injury that just didn't go away. I have multiple tears in my knee. It's not so bad I can't walk, but I see ortho again next week to start the process of what to do. If I have more than short bursts of activity, I get low grade pain so nagging I can't sleep through the night. Your nagging pain makes me think you should get it checked out, to make sure whatever it is, is healing properly. Even if it's only a minor muscle tear, you may find a support brace for a bit to help it heal optimally works.
Take a deep breathe. One day at a time. For today no one talked about surgery. My spleen got enlarged many years ago. I feel it was due to extreme stress that I was under at the time. When I walked, I could feel a pain under my left breast. The stress resolved itself and the spleen reduced without medication. We forget but stress isn’t our friend. If your doctors aren’t worried right now try meditating and let it go. I know that is easier said than done
I appreciate your simple input, and I think it is so true too. Overall I have placed my faith in my Super Specialist in Boston. She saw the MRI Report and isn't concerned yet. Overall I figure I should just calm down and let her review the blood work, ask the questions, and then call the shots. I don't see her again until September, but I do see the local one I keep up with too in Boca in June. I'm in good hands, and I just need to calm down and be thankful I'm still doing so well.
I had my spleen removed in 1998, six years into my CLL journey. I was told it was very large and very dangerous and to be careful with activity until the surgery. That was back when I was not nearly as questioning as I am today and had it been today I would be starting some sort of treatment rather than allowing the removal. Back then the only info I remember finding on an early internet search about CLL was that I had about 5 years left. I don't recall any real problems from the enlarged spleen and I've not had any issues that I can attribute to not having a spleen. It was a horrible surgery because I was pretty much opened up to get the oversize organ out, totally helpless for several weeks after. I had FCR in 2000 and again in 2003 then no further treatments until starting O&V last September.
Sorry you were going through things before some of the newer meds and concepts. I see you had Chemo, and I'm so thankful today it is not the norm for treatment. You had a Spleen removed, risking problems with infections after that, and today the more common idea is to start treatment to fix the Spleen; even, when the HgB and Platelets are not yet an issue. My Father had Chemo on and off with CLL. I have trouble remembering what his schedule was, because he was living in NYC during his diagnosis and treatment years, and I was in Pennsylvania and then now Florida. He and my Mother did move to Florida in 1994, but he died one year later (internal bleeding that they didn't diagnose and treat). I think it was like three months on chemo and three months off continuously. I'm really happy that you are still doing well
My spleen was palatable below my rib cage before I started treatment but was only a minor factor in my beginning treatment.
The main factors were my Hg dropping and extreme fatigue. I had felt fatigue early on in my CLL journey but looking back it was likely psychological fatigue. I suppose for the mothers in this forum it is like the difference between Braxton Hicks contractions and actual labor pains. Until you experience actual labor pains, you don’t know it’s not the real thing.
When the CLL fatigue began, at least in my case, it was different. My fatigue was triggered by chores or exercise. If I went in a bike ride that included any hill climbs, I felt good afterwards for 5 minutes. Then a deep tiredness overtook me and this lasted for two days afterwards. It seemed to be the signal that it was time.
After the decision was made to begin treatment, it took a month to get it going.
I decided to participate in a Phase 3 trial for treatment naive patients. This means the drug had already been tested in two prior phases and the results were good.
I am taking Pirtobrutinib which is a non-covalent BTK inhibitor. The non-covalent means the drug does not result in permanent bonding with the BTK receptor. This has resulted in fewer side effects and may result for individuals with a longer period of us before the drug becomes ineffective.
Participating in a third phase trial may result in your taking a safer drug and be less expensive than not participating in a trial.
It used to be that people waited to treat CLL for as long as possible. That strategy is being questioned now as newer treatments are much less onerous and people often do better not being so ill before starting treatment.
As with all the other wonderful family I have here, thank you too for communicating.
Your comments on the fatigue were good for me, because I've thought my fatigue is from CLL, but it could be more from worrying too much a lot of the time in addition to not being in as good shape as I could be. What you described is something I might one day realize too, so at least I know to look for it. I do get very tired much more easily and more often than before, and I don't think I'm in that bad shape, so I'm pretty certain my significant fatigue has to be at least somewhat due to the CLL.
I have been worried about the cost of treatment. I still continue my work, and fortunately I am my own boss and can decide when and how much I push myself. My work is not physical at all, so I can keep going by basically maintaining a book of business and get very easy referrals for some new business. I'm very lucky in that respect. Still $15,000 per year is daunting to me, because it would hinder things we currently do that I enjoy in my waning years. I suppose I could take a home equity loan when the time arises, but if Grants are available that would ease the pain too.
If your income is moderate, say around 65 or 75,000 or less, usually you qualify for grants, and also separately there's a patient assistance program at the various drug companies. LLS.org and pan foundations are good places to start.
Those amounts of income vary, so if you're more than that it's still worth looking to see if you qualify.
Thank you for helping. Would you know if the required income limitation varies depending on size of household. I'm thinking that the $65K to $75K is for a Single individual, and there would be a larger income threshold for a household with a total of three. In our case there are my Wife and her Grandson, in addition to me.
And if you are going through a study using an FDA approved drug, the study RN's and pharmacists help with a lot of the paperwork and applying to various places for grants, etc. I recommend starting with the drug company, since deductibles, copays, and whatnot are irrelevant if the drug company is providing the drug directly. These generally involve getting an insurance approval/authorization, but not running a drug claim through the system. The drug company isn't going to do any due diligence; the insurance company does that when they approve a medication. Or even a rejection, if the grounds are "not on formulary" or "must try X or Y first before approval" but otherwise would be approved.
All I can say is that prior to treatment I was told my enlarged spleen went down to my pelvis and I looked pregnant and had to wear pregnancy tops and loose pants as it was very uncomfortable, my ribs hurt as they were pushed out and trips in a car with bumpy roads were uncomfortable so I'd hold my side or need a rest stop. I treated first with imbruvica and then venclexta and rituximab and my spleen went down slowly over time. I wear normal shirts again. I never considered spleen removal and neither did my doctor suggest it.
edit; re exercise, no planks, no sit-ups, no anything that stresses your trunk
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enlarged spleen
8 and 1/2 months on ibrutinib , great news
Recent Chest CT scan to check for SLL progression, June 7, 2024 (part 2 of 2 posts)
