Hi, I have been lurking and reading up on CLL but haven't really found what I am looking for. I have learned more about CLL and that has been extremely helpful but I'm not sure where to seek answers for my question and if there is a better support group for this please point me to it.
My father is the one who has been diagnosed with CLL, he is 85 and his past includs prostate cancer and colon cancer, my parents (mom is deceased now) always thought he got CLL because they "cut through the cancer" when removing his prostate and so that is why he got it. They would bring this up every so often about the doctor cutting through it and that's why but they never said why what so now I'm thinking someone must have mentioned cancer of the blood years and years ago? Anyway it's only been about 2 years since I've known he was diagnosed and he decided he wasn't going to treat it so never went back to the doctor where they were living.
During that time my mom was struck by a car in a parking lot, told she had masses in her abdomen and chest that was possible lymphoma, she wouldn't do anything and passed in August.
Now my dad is living with us and I got him to agree to get under a doctor's care for is prostate (he takes some sort of hormone shot every 6 months still for that) and his CLL. We have a great doctor but there are only so many questions I can ask while in there with my dad. I can come back later and let you know what his numbers look like but they were somewhere around 147,000 then 6 weeks later 194,000 and he goes back today. He doesn't want any meds and the doctor mentioned he may be ok getting a couple of blood transfusions but he probably wouldn't want many more than that.
So finally my questions... how does getting blood transfusions affect quality of life that he may only want to do that a couple of times? What does CLL look like untreated? I know that it looks like you all are in the stages of fighting it so that's why I have put off asking this because I really don't want to bring you all down thinking about this so if there is somewhere else I can go I won't be offended at all. You all seem so helpful here. Oh and feel free to add anything else you think I may want to know.
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Dutchbunch5
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Thanks for posting . I understand and empazize with your dilema. Although I am the CLL patient, I manage all the care for my 94 year old mother, who does not want any further treatments for her high blood pressure, heart valve problem, etc.
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Although I am not medically trained, I will try to answer some of your questions from what I have learned from my CLL expert doctor and from many other sources over the last 12 years dealing with my CLL.
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If your father's CLL progresses and his bone marrow gets crowded, he may start experienceing anemia (shortness of breath, fatigue and lethargy), so the doctor may be suggesting a blood transfusion to help with that problem. But he might need transfusions weekly as his body makes less and less red blood cells and platelets. Also if his platelets are low, he may experience bruising and bleeding.
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I addition he may start having frequent infections, pneumonia, etc. He might also feel full and stop eating enough to maintain his weight if his spleen enlarges.
Hi Dutchbunch. And welcome! Sorry for the losses you have experienced and for your Dad too and his situation. There are a few things wrapped up in your questions...
1. I don't believe "cutting through" any solid tumor cancer can in any way can cause CLL or be related to CLL progression. So I think those 2 health issues in your father's life are not connected. The concern about about cutting through and dispersing cancer cells from a solid tumor cancer pertains more to risk of metastasis to other parts of body - lungs and liver commonly since they receive a lot of blood, and that's how the "loose" cancer cells would travel. So for example, surgery on colorectal cancer could potentially resolve the local occurrence but contribute to metastasis of it somewhere else in body. Still - if you need that surgery, it's probably a risk worth taking. But I don't see any way this would cause or trigger a bone marrow cancer like CLL.
2. Re: your father's wish to not have treatment... It's not unusual for an 85-year-old to not want cancer treatment because of the perception of horrible sickness, hair loss, weight loss, nausea etc. that most people associate with the notion of "chemo" or "cancer treatment". But make sure your father knows that the new generation of drugs for CLL are not like that. They are non-chemo drugs. Pills for the most part that are taken at home. Many of us on these new drugs have virtually no side effects and wouldn't even know we are taking drugs. Some people have compared it to taking Tylenol in terms of the ease of using these new treatments. Just make sure your father is aware of this before he makes his "no treatment" decision. He may have a false concept of what his "treatment" would entail.
3. I can speak from first-hand experience about what untreated CLL progression looks like. I let mine go very far because I was hoping to find a way to manage it without treatment, and because I had no confidence in doctors or Big Pharma to do anything but make me worse. This proved to be a big mistake. I got very ill and near death. I was dependent on blood transfusions by the time I started treatment. My bone marrow was 95-99% infiltrated. My marrow could not produce hardly any normal cells - (red blood cells, neutrophils, and other things). So I was very neutropnic (high infection risk). I was very weak and debilitated and constantly at risk of infection (from low neutrophils), at risk of stroke (from low hemoglobin), at risk of bleeding (from low platelets), at risk of and experiencing broken bones (from osteoporosis resulting from the advanced CLL and affect on marrow).
Once I was started on ibrutinib 2 years ago (one of the new non-chemo drugs), these conditions corrected very quickly. I got my life and health back. For the most part I would not know I am taking a pill. Although it did, apparently, contribute to or cause Afib in me case, so I am being moved to another new non-chemo drug - Venetoclax. And that is actually a good thing - even better than ibrutinib in my opinion.So I am actually pleased with this development. I don't see it as a bad thing. These are both oral pills taken at home.
It is not clear from your post how the overall health of your father is doing. The fact that he is 85 and has prostate cancer doesn't tell me much, there are a lot of 85 yr olds in great shape.
As Kim wrote, I can understand someone who is very near their end and chooses not to suffer through difficult treatments. But your father's cll treatment might be as simple as an oral pill a day with tolerable side effects and that would spare him the pain of a cll related death.
If your dad is otherwise reasonably healthy for his age, I think he should meet with a cll doctor and explore his options. I doubt any harsh type chemo treatment would even be on the table for him.
What CLL looks like untreated depends on the needs that are not being met--if it is platelets being too low, it can be bleeding; if it is low neutrophils, it can make for infections ; if red blood cells, hemoglobin are low, anemia is the probability and breathing can be difficult.
As lankisterguy has said, the blood transfusion(s) can help your father to feel better, The transfusion itself should help him to not feel lethargic and to help him to fight infections and hopefully give him a new look at life with a bit more energy.
If the CLL is progressing any of the above can take place, and if not treated for CLL, each of those issues can be addressed in some manner to keep your father comfortable. Treating each specific situation is most likely to be a continual process, which your father may not want to have happening.
Can you have a conversation with your father's Dr? If so, ask for a consultation in regard to what is recommended next and also ask about palliative care accommodations, to have that possibility in your portfolio of information as a last resort for comfort and ease of your father.
As far as treatment goes, it is his choice to make; and there are treatments for elderly who have other illnesses also. The one that is newest is a combination of Obinutuzumab + Venetoclax and is being used for a year-long treatment. I don't know where you live, if that combination is available. The fact is, while the new medicines are better than the chemotherapy of old, all of them have possible side effects.
Explore with the Dr. what is recommended, ask the questions you want to know more about in regard to treatment/palliative care.
Best wishes, and please let us know how the appt. goes (may have gone by now).
Thank you all, I was way off on his wbc count it was 200, 247, and now 300 (every 6 weeks) and his hgb is 7.5. We're going in for his first blood transfusion tomorrow so hopefully he'll take it well. It is hard to describe how his health is because he has aged so much in the last 3 years so in the past I'd say he was in great health if I really think about it he is quickly becoming frail, unsteady on his feet, and some days he's sharp as a tack and others he gets confused easily. To answer PlanetaryKim, I do know that he didn't get CLL from the prostate surgery, I just think that a doctor must have said something to him years ago about possible blood cancer and they just assumed that but I'm thinking now they were actually told about this years ago but we have all just found out recently. Sorry if I wasn't clear on that.
With hemoglobin that low, I would consider asking his doctor to do a Coombs test to rule out hemolytic anemia. Hemolytic anemia is a autoimmune complication of Cll some of us get where our body destroys our own red blood cells.
Hemolytic anemia can be treated differently than Cll, sometimes justvwith steroids. If hemolysis is the culprit in his hemoglobin being so low, it will amaze you how much suddenly better your father would be if he can have his anemia treated get his hemoglobin back over 10.
Most doctors know to look for hemolytic anemia with hemoglobin so low, surprisingly some do not. You should definitely ask your doctor if hemolytic anemia has been considered and if a Coombs test has been done.
An HGB below 8 could be the cause of some of the changes you are seeing in your father. Something to ask his doctor about. When mine was at 8, I was passing out in public. Not fun! I hope that your father's doctor can suggest a treatment with minimum side effects that your father can accept.
Not to be flippant about it, but your father has a blood cancer and you can not cut out the blood cancer to remove it. As your hemoglobin drops, your organs will shut down from lack of oxygen without transfusions. I had a friend who was requiring transfusions to the point he said this is no way to live and stopped all transfusions. This was many years ago before the advent of the many oral drugs we now have. If his platelets drop to much, internal bleeding can occur. Blessings to you and your father.
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New to forum, hoping for advice. 
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