Deletion i was told that my father wont respond to chemotherapy anymore i told my father that but his doctor insisted , a strong dose, it took 2 weeks my father was in pain
All over his body he added ibrutinib after that, was too late he got an infection , doctors tried all antibiotics didnt work , i was so optimistic about his disease , i want your opinion what if he didn’t try chemotherapy after the mutation
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Ornate2001
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Ornate, I'm very sorry to hear that you lost your father to an infection after starting treatment. Sadly, because CLL is well described as a cancer of the immune system, fatal infections are a common cause of death. The risk of infection is higher just after treatment starts and can remain higher than during watch and wait, during treatment and for some time after treatment finishes. That's because by the time treatment is needed, CLL has usually reduced the bone marrow's capacity to make infection fighting white blood cells, in particular neutrophils. Given all CLL treatments tend to further impact the bone marrow's white blood cell production, it's common during and for some time after treatment, to provide prophylactic support - antibiotics and/or antivirals.
Infection risk statistics are gathered and reported during clinical trials and categorised from grade 1 (mild) through to grade 5 (death). Clinical trial reports are used by the FDA or other treatment approving bodies to determine whether a new treatment protocol is approved for first or subsequent line treatment. Approved drugs can also be withdrawn if the approving body becomes concerned at what is considered an unacceptable risk.
You previously shared that your father had 3 sessions of chemotherapy back in 2019 and achieved remission. Mutated TP53 and 17p del markers can be caused by the older chemotherapy treatments. These sub-clones often become dominant when remission ends and are resistant/refractory to the earlier and other, older chemotherapy treatments. That's why you were told that your father wouldn't respond to chemotherapy anymore. Ibrutinib was certainly an appropriate treatment choice with those markers, but depending on the percentage of CLL with mutated TP53 and 17p del, your father might have benefited from some response to an older chemotherapy to quickly reduce his CLL. Ibrutinib works fairly slowly compared to the older chemotherapy treatments.
With respect to your question "what if he didn’t try chemotherapy after the mutation", that is, would your father still be alive? That's unfortunately impossible to say. As I explained earlier, all treatments come with the risk of infection. However not everyone gets infections during treatment and if they do, infection seriousness also varies. It's important to identify the cause of any infection, so the right antibiotic, antifungal or antiviral (if available) can be used. Doing cultures to identify the infection cause takes time, particularly for fungal infections and often the cause can't be found.
You are understandably grieving for the loss of your father and wondering what could have been done differently to safe his life. Seeing your father in pain and feeling helpless is very tough. I see that 3 weeks ago, you quickly reached out to all the communities on HealthUnlocked that you could find in order to help your father, plus I expect many other sites. Your father, I'm sure, knew that you were doing what you could to help him overcome his CLL. He knew that you were there for him.
I have CLL since 2010 or so. Had FCR in 2018 stopped at three rounds due to prolong neutropenia for a year. I was placed on 4 anti microbials the whole time. Of note, V+ O has been far harder with the side effects than the chemo. I felt deathly ill for a few days then back to full activity feeling better than pre-chemo, for 3 weeks in each cycle. The Ven symptoms just goes on and on for 14 months with a rare streak of a week feeling better.
I had a relapse when the Covid pandemic was first becoming a big issue.
I’ve been on V+O for 14 months
Here is my QUESTION
Ihad been slowly making progress on the adverse effects from the treatment, such as fatigue, malaise, intermittent diarrhea, and generalized muscular skeletal pain that had been there all along, but went from basically a three to an eight or 9/10 once I started treatment.
After I made the progress, I caught a virus 6 months ago while visiting grandkids and not wearing a mask, Nasal swab showed enterovirus and adenovirus, but no Covid.
It took about 6 to 8 weeks for this to clear during which time all of adverse effects were significantly worse.
It seemed to clear up for a couple of weeks and I started to feel really good again.
I caught another URI with headache, nausea, and some vertigo as well as a week of diarrhea so bad that I had to wear and adult diaper, and an increase in muscular skeletal pain and worsening fatigue. Multiple home test as well as lab test showed no Covid or any other viruses and I got worse.
I was hopeful my marrow biopsy would be clear and I could stop treatment so I stopped perusing seeking medical advice on the URI.For a bit thinking all would be well if I could stop the Ven. But came back 4/10,000 CLL cells.
Ultimately, I remembered having had chronic sinus infections prior to FCR and that was finally cleared with IgG and 4 weeks of Augmentin,
So due to the the nasty mucous and feeling so ill, I decided to take Augmentin for three weeks.
After two weeks into Augmentin, I was feeling great, better than in months. I continued it for 3 weeks and stopped.
A week later I was very ill again. All of the symptoms recurred and I developed a cough that produces mucus.
My primary care said it was just allergies, but actually the symptoms didn’t match.
I got into see an ENT doc who looked up my nose and found purulent material stuck a swab up and got a deep culture. I’m still waiting on the results, and while doing so he had me go back on Augmentin.
in looking at the current culture lab results, I’m a physician and can do so, I don’t see that they’re doing any fungal cultures even though the doctor told me that they would.
This takes me back to 2019 when it turns out that after being sick for four months I had Aspergillis Niger in my sinuses, inner ear, and mastoid air cell and had to go on voriconazole for two months. Funny but if I hadn’t called the lab they would have not worked up the fungus.
This was after messing with various anabiotic for four months and getting sicker and sicker.
Just wondering if you have any suggestions about how to get to the bottom of all of this.
I keep thinking that I should see an infectious disease doctor that deals with the immunocompromised, but my oncologist has only started to agree and I’m waiting for a referral.
unfortunately I do not think there is an infectious disease doctor that specializes in immunocompromise patients.
I was sort of deciding this morning to try use the distraction technique and just force myself to get super busy so that I don’t notice the symptoms.
And then I read the post this morning about this untimely death in a CLL patient on Treatment that succumbed to infection.
I then remembered the fungal infection I had.
Now thinking I need someone to do a thorough evaluation
Sorry for rambling. I’m just struggling for some answers
Any perspectives you have would be greatly appreciated.
CLL specialists are specialists in CLL, not infectious diseases. Hence a referral to an infectious disease specialist and/or stressing the importance of doing cultures to your doctor to determine the responsible pathogen, so the most effective antiviral, antibiotic or antifungal, etc., is prescribed is highly recommended. When my immunity worsened prior to needing treatment, my CLL specialist referred me to both an infectious diseases specialist and a dermatologist and they concurred both on what was causing very painful skin infections as well an effective approach to eliminating them.
This very important issue of potentially life saving infection management inspired this pinned post:
With a CLL diagnosis, knowing more about your immune system could save your life!
I’m having to push very hard to get the appropriate care but things are so slow.
I need to get supplies so I can do my own cultures.
just found out I have pseudamonas, staph and citrobacter growing and can’t get through to ENT doc. Spoke with my oncologist nurse who was supposed to call right back but it has been several hours and they are now closed.
I’m getting my own appropriate antibiotic to cover for now
Our system her seems hopelessly broken.
A couple of times my docs missed things that I may have not survived were I not a physician and known people to call.
Do you happen to know where is the best hospital or clinic for all of this?
I have both CLL and CML. when i got a pleural effusion after years of dasatinib, my onc, who missed the CML (found years later by a specialist from previous original test results! … said, regarding the PE, “well, there’s nothing we would do.”
when the protocols are right online #1: suspend dasatinib!!
i had 2 thoracentesis before he even wanted to order ct scan. took charge myself.
Have you thought about changing from IVIG only when you dip below 400 mg/dL to weekly sub-cutaneous infusions to keep your IGG at a stable level above 600 or 700 mg/dL? When I did this all of my acute and chronic infections stopped happening. I spoke with an Infectious Disease specialist who said that he uses a baseline of over 700 mg/dL for his immunocompromised patients. My IVIG was always cancelled for the month if I was any number over 400, even while I was on antibiotics for weeks and weeks for infections that were not improving.
The levels are simply more stable, instead of the abrupt high levels immediately post IVIG. which drop to sub-therapeutic levels during the week before the next IVIG. If home sub-q infusions occur weekly, and IgG lasts about 21 days, there are not the acute high and low levels that occur with IV infusions monthly. During transition from IVIG to sub-q, the ordering physician/provider can see the levels and adjust dosage over a month or so with weekly IgG labs, which generally are a $15-$55 cost each, but which was covered entirely by my insurance without any co-pays. I have had no co-pays for supplies or IgG except two $15 copays for the two times I went to a hospital infusion center to have a nurse give me instruction for self-infusing for the first two sub-q infusions.
New Medicare Part B codes "implemented on August 13, 2019 ensure increased access to home IgG replacement therapy to more people" according to the Immune Deficiency Foundation at 800-296-4433. or (410) 321-6647 at priaryimmune.org/contact-us
I was thinking about Ig levels as well for Skipro. I saw an immunologist and asked what I should be doing for my repeated sinus infections, asthma episodes, and most recently. Strep. He strongly recommended Ig because it would include antibodies for viruses and protect against bacterial infections as well.
I had my first infusion today. Medicare definitely covered it all.
The doctor I saw today at my CLL specialist office said that after a few months of doing infusions, there was the option of doing a subcutaneous delivery at home.
So perhaps Skipro, a visit to an immunologist might be in order.
I'm so sorry about your loss. Whether cancer or other medical issues, it is the hardest thing when family members are left wondering if something else could have been done medically for their loved ones. I hope you are comforted by your memories and the lifetime of love that you shared.
I also had the 17p/tp53 bad news at diagnosis and got a fludarabine treatment, then halted that when the doctor realized it didn't/wouldn't work, and my doctor was afraid to give me the full course of treatments because killing all the tumor cells at once would be too much for my body to take (I think it is the overload from killed cancer cell contents that the body would have to eliminate that puts a patient in danger). Only reading on this site is how I knew I should not have had the fludarabine with a 17p/tp53 marker.
I am sorry to hear this, you must feel awful. Are you saying your father had repeat chemotherapy recently? And after 2 weeks of the chemotherapy he started ibrutinib? Then got an infection?
Yes, I wonder too as that is how I read it. And when you described their giving him chemo recently, if I got this right, after it clearly wasn't working and you felt it was harming him, it took me right back to when Dana Farber nurse practitioner gave my husband more chemo after it was clearly not working, he was in bad shape and I had asked for no more (it was a clinical trial so they wanted to pump in as much as they could regardless, I guess). But as Neil said, I'm sure your dad was comforted that his child loved him so much and was so concerned. It is very hard right now, but your dad is out of misery if that is any consolation. Very sorry.
Sorry to hear that your father passed away - Hope the memories of better times together can help provide a bit of comfort - It’s hard to deal with the loss of a father and the “what ifs “don’t really help ease that pain - Focussing on the happier parts of his life and accomplishments is more productive and honors his memory -
I’m so sorry about your dad x I lost my lovely dad last year and it hits so hard x
CLL is a weird condition to have. I used to be a person that looked at all the side effects of any medication, but when I needed treatment for my CLL I didn’t think twice. I knew I had to have treatment, and was very grateful for the breakthroughs in medications. But it was also very frightening.
I realised, talking to a friend who was worried about a few potential side effects from her simple medication, that although we are very grateful for these amazing medications, we are taking medications that have risks of wiping out our already depleted immune cells, or our platelets etc, but we take it in our stride. It’s because most of us are lucky enough to get through to the other side. And we are at risk of those infections anyway.
Personally, I would never have not had treatment. My life was already very unpleasant with a very large spleen and no quality of life x I know I would not have survived without treatment xx
You were so wonderful with your dad, supporting him like that. Sending you a big big hug 🤗
So sorry to hear about the passing of your dad. Let us pray that he is in a good place. As for you, you did what you could. Let good memories with him last.. take care
so very sorr about the loss of your dear dad. He really was so brave! Infections are so difficult to fight and often just treat..imam age 76 been through 7 treatment ( including 3 phase 1 clinical trials in past 22 years and picked up a Norovirus 17 months ago..Viruses impossible to cure so just treated for massive daily watery diarrhea with IV hydration and infectious disease did try Xifaxan GI antibiotic twice but no long term help. I have lost 45 lbs ( weight went from 145lbs down to 101 and now just 105 lbs).. Now norovirus is chronic formesaid my Infectios and GI specialists. Infections can kill..it is hard enough to kill cancer without worrying about infections..Husband and I don’t get out except for groceries..prayers for your family for strength during this terribly difficult loss!
I'm so sorry for your loss Ornate. If you are concerned about medical malpractice, take some time to tend yourself and your family first. In a few weeks, you can request the treatment protocol and guidelines the hospital referred to determine whether this treatment was appropriate for your father. There are also patient liaison services at some hospitals who can handle these requests on your behalf, they are independent so will act in your interest.
It's possible that your father had tumour lysis syndrome rather than a genuine infection, which is when his body's immune response is triggered by chemotherapy. Either way, it may have still been worth trying chemo. But its also possible that there were clear reasons not to, which may have been ignored.
You will be angry and looking for someone to blame, understandably so. But vengeance and fury can wait. Take some time to look after yourself before deciding how to proceed.
So very sorry for your loss. You were there for your dad and he knew that you supported him, and that definitely meant alot to him. Praying for you and your family.
My sincere condolences on the passing of your father. Your questions harbor a hidden concern all CLLers have and is considered when undergoing any CLL treatment. At the same time the outcomes should not keep us from undergoing treatment as the alternative without treatment is worse. Blessings.
My sincere condolences to you on the passing of your Father. I will reiterate what Neil has already said in that I am certain you Father knew you were doing everything you could.
I also wanted to say, your Father is never really gone as you are the living legacy of Him👍
Ornate,So sorry to hear about the loss of your Father. I lost mine last year- not to CLL but to Alzheimer. I too wonder if there was anything else that could have been done. I pray for you and your family.
In my heart, I'm wrapping my arms around you and praying for your peace with this. I too lost my wonderful dad. It was prostate cancer and dementia. I questioned everything too...He gave the warmest and most loving hugs I've ever known. That is what I'm sending to you and everyone who has lost someone they love. God bless you and your dad. ❤️
I am so sorry for your loss, Ornate 2001. You must feel awful. Time is not a healer. I don't think we ever get over the loss of our parents if we had a happy childhood and a good relationship in adulthood. It is even harder to bear if the circumstances surrounding the death should have been avoided.
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