On my latest six month visit to the hematologist on December 8, I mentioned I had been sick for three weeks at that point, and had continuing trouble despite having been given antibiotics in the first week with sore throat and ear ache. On December 4th it spread to both eyes after the ear infection had stopped. An urgent care doctor put me on antibiotic eye drops. The throat had never fully stopped but was a little better. She made the following comments on exam: I can feel the liver, I can feel the spleen, now I feel for the first time lymph nodes in your armpits and groin. Then she said perhaps we need to think about IVIG soon. I said i didn't want to start it if i didnt have to do so. She said we didn't have to start it, but if I continue to get repeat infections with difficulty beating them then we should consider it.
By December 10th the eyes had mostly cleared up, and the ear and throat started hurting again. Then December 13th it both eyes came back with extreme redness and pain and huge amounts of fluid. The ear and throad started more too, so I went to see an ENT. He said the ear that hurt had fluid behind it but no infection. He couldnt see infection looking down the throat, so he put the tube down my nose (that hurts) and looked deeper. He still didn't see infection. I asked why it hurts so much then, and he said that was the million dollar question. He sent me for a CT of the throat that I had on the 16th. Then on the 20th I saw an Opthalmologist who said the eyes were inflamed but no visible infection. She has put me on steroid eye drops, which I started first dose today. That first dose is already helping.
The CT of the Neck showed the following:
MPRESSION:
1. Severe bilateral lymphadenopathy in the neck with marker nodes measured
above.
2. Limited visualization in the mediastinum shows adenopathy. Findings are
It mentioned two Nodes with one 1.5 cm by 2.5 cm and another 1.5 cm by 1.3 cm
I'm asking the group a couple of things to help my mind. One is if I'm not on IVIG and continue with a trip I'm planning to the Philippines for one month leaving Feb 8, and I get sick in the Philippines, can IVIG help me if an infection has already started?
The other question is if anyone else in our group has had pains in the throat that don't go away, and possible effect on the voice too, was it found to be related to proliferation of lymph nodes. Also any input on my recent bout with illness and the CT report.
Thank you as always
Carl
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wizzard166
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IgG is specifically given to help ill people fight infections when the usual methods fail, though only for a limited range of the more common serious infections, though in those cases it's specific to the infection concerned. Infusions of the broad mix received as a prophylactic, might therefore help you combat an infection and maybe that will be enough to help you overcome it. I'd say it's worthwhile having at least one before your planned trip next year. If subcutaneous IgG is possible for you, I'd strongly recommend starting it as soon as you can and training up on it so that you can take supplies with you on your trip. The cooling requirements are moderate; you just need to keep the IgG vials under 25C/77F. Just ensure that you take it as hand luggage. You don't want it sitting on the tarmac in the tropics!
Again with respect to that planned trip, your lymphadenopathy is obviously one, if not the primary contender for the trigger for you starting treatment. You're attending one of the top CLL centres in the world at Dana Farber, so I trust you've shared your travel plans. You haven't mentioned your blood counts other than your ALC, so I hope your neutrophils, haemoglobin and platelets are behaving. Managing an overseas trip on the cusp of starting treatment, particularly if you aren't sure of the local expertise in CLL where you are travelling, is not for the faint hearted.
You didn’t mention any treatment history or if you are still on WW. I had been on IVIG for 4 years when my WW came to an abrupt end with hospitalization for sepsis. I was on monthly IVIG at the time.
Thanks for the reply. I'm on W&W since diagnosis in February 2018. I'm not getting sick so far regularly, but when I do get sick I have an awful time beating it. I have a history of four Pneumonias lifetime, three that hospitalized me, and these were before CLL was diagnosed. So I figure that my likely ultimate downfall is going to be Pneumonia.
I've resisted a suggestion from my local Hematologist to consider IVIG last year, and then she mentioned it again when she just saw me first week December. I don't want to start it if I don't have to do so, because I feel like it will be a change in my life that I will not ever reverse.
My big worry now is I'm going on this trip to see my Son and new Granddaughter in the Philippines leaving on February 8, and staying for one month, so my risk of course will skyrocket as opposed to staying home. My Wife has suggested we don't go a few times already, but I feel like it could be my last chance to see my Granddaughter. Who knows where the progression of my CLL will be one year from now, and I'm also going to be 76 in March. So I'm going come hell or high water, and I'm just being optimistic. Still I'm wondering if I can get IVIG in the Philippines if I get sick, can it work as a one time shot to stop the Pneumonia or is it only usefull when taking it monthly over a long period of time.
Hi Carl: I think you are looking at IVIG the wrong way. It is a prophylactic not a solution to an infection. I understand your desire to avoid IVIG. I’m the same way. However, if my doctor suggested I start receiving IVIG I would do so immediately. The question you should be asking is can I get SCIG? In this application the patient administers the IG via fine needles into his/her stomach. This application would work well with your planned travel and it would keep you safer from potential infections. Trying to find a doctor to treat an infection in the Philippines wouldn’t be my idea of fun. Congratulations on your granddaughter!
I was on monthly IVIG when COVID hit. I was so afraid of contracting COVID at infusion clinic that I didn’t go for 4 months. My IgG levels dropped so low that I had to restart IVIG. I am now maintaining adequate levels with IVIG every 8 weeks. AussieN is the expert and the suggestion to get IVIG started ahead of the trip makes sense. “An ounce of prevention…”
Hello Everyone, I am a 13yr (8/2009) CLL Leukemia Survivor previously on W&W. I became symptomatic 12/2020 but my Oncologist since 2011 kept telling me it was nothing. Left her after my Cat Scan 9/2022 showed water balloon like masses causing bowel obstruction type symptoms. New doc 10/2022 wrote that I was staged IV & was pushing Targeted Therapy on my initial visit. Only had 2 bad infections 4/2021 Covid Pneumonia & 8/2022 Month long Para Sinusitis. My previous Oncologist offered IVIG in 2020 ( not telling me I was stg IV) when I refused the Covid ‘vaccine’ but the criteria is repeated infections & I don’t fit that build.
I am a purist organic plantbased raw & juicing, that has stopped the obstruction like pain. Organic coffee enemas is recommended but I can’t get my mind right with that even though I have the equipment. I am a Certified Group Fitness Instructor & exercise is really the flex. I follow the 8 Laws of Health based on the Seventh Day Adventist Health Message. The belief is that disease is caused by violations of the 8 Laws, fix those & it can be reversed. The acronym are NEW START & its my guideline; N - Organic Plantbased Wholefoods Nutrition, E- 1 hour of Cardio (just Walking) 7 days/week, W- 1 Gal of Water, S-Sun and/or Vit D3, T-Temperance in all things, A-Fresh Air circulating especially where you sleep even in the winter & also Plants that clean the air, R-7-9hrs of Sleep, T-Trust in a Higher Power
My Hemoglobin went 10.5-11.7, Platlets 77-89, WBC 89-72 & weight 275-262 (max weight 340) so things are moving in the right direction in 2 mos. I want to learn more about the Targeted Therapy, Immunotherapy, Chemo & CART before I say yes to anything. I realize that I have been fortunate in my journey but I also made major changes too. I was stable with WBC @20’s for 11yrs & this change is not easy. I have 27yr old twin sons with Lupus & the oldest is stg 3 Kidney Failure on a transplant list, his brother is stable. My estranged 33yr old daughter has MS symptoms & is Bipolar. The Twins Father had Prostrate Cancer also, so we have a lot going on. Only slightly good thing is that I am a Bachelor Prepared RN for 30 yrs & ~15yrs in Critical Care
Hi Vera and welcome to our community. You've said you want to learn about the various targeted therapies and you'll certainly learn about them here, along with other evidenced based approaches to living well with CLL. You've made an absolutely great start on achieving a normal BMI, which will deliver huge health benefits. There is more evidence for exercise improving outcomes than any other watch and wait intervention. (See below for just some of the evidence).
You've mentioned being assessed as being in stage IV. With CLL, staging doesn't have the influence over starting treatment that it does in other cancers. It primarily reflects how much CLL is impacting our health. I was diagnosed in stage IV when my CLL/SLL was diagnosed 14 years ago, yet I stayed in watch and wait for 11 years before needing treatment. The triggers for starting treatment are documented in this pinned post: healthunlocked.com/cllsuppo... Your platelet and to a lesser extent your haemoglobin counts were approaching treatment territory, so well done on reversing the trend through your hard work in improving your body's fitness.
You're obviously aware of the risk of death from infection when we have CLL from your mention of IVIG - an immunity transplant of antibodies/immunoglobulins resulting from the infections and vaccinations of thousands of blood and plasma donors. (Vaccinations are simply a way to get a natural response to an infection without getting the actual infection. You'd know from your RN training, that it's akin to showing children videos of dangerous animals without risking the animals attacking them.) With respect to COVID-19 vaccinations, I don't know of any CLL specialists that would recommend we not have them, barring a serious allergy. The recommended vaccinations when we have CLL are covered in this pinned post: healthunlocked.com/cllsuppo... Getting up to date with protective vaccinations is the best way to prevent, or significantly reduce your risk of premature death, so that you can be there for your children.
I can understand your reluctance to have coffee enemas. I presume you've witnessed how unpleasant they can be from your nursing experiences. Good news is that scientific evidence has determined that "Coffee enemas are considered unsafe and should be avoided" sciencebasedmedicine.org/as...
When you have neutropenia or low platelets, I'd consider that would further increase the risk of having them!
Stick with your exercise routine and let us know how much more you can improve your health!
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2 Questions about IVIG
Ivig therapy and health insurance
Not “sick” enough for an IVIG treatment...
