Catherine Leonard
Forum Replies Created
-
Cautionary note on zinc.
If you have an autoimmune disorder/ disease (I do.) and zinc strengthens the immune system, it can work against you. This is my understanding based years ago when it was all the rage to take zinc supplements when coming down with a cold.
*I suspected then that I had an immune disorder- now it’s official, and my IPF treatment is to have Rituximab infusions every six months for the purpose of depressing my immune response.
At any rate go cautiously with zinc!
*(Hypersensitive pneumonitis/IPF) -
I’m very interested in the ritux treatment topic!
Here’s my rather convoluted history:
I received my first set of two ritux infusions last July, and had one 12/15 with the next scheduled for 12/29. My pulmonologist zeroed in on my IPF telling me I have hypersensitive-pneumonitis, which boils down to an immune system disease.
The ritux theoretically will keep my IPF from progressing. I’m complicated by having had Hodgkins large B cell lymphoma, which designated to be in remission after last chemo April 2021, but now another spot is growing in my lung.
Lung biopsy lead to pneumothorax, which means my lung collapsed and unfortunately not enough sample was obtained to identify. So I have that unidentified … something growing.
Because ritux was part of chemo cocktail, and tends to inhibit the lymphoma, it is considered to be a best of both world choices for me right now. I seem to respond well to it, and am thankful my insurance covers it! March CT and PFT will be the measure of how well it’s working for me. The part about not having a functioning immune system given our covid world doesn’t really change my level of precaution when choosing to go out into public sphere. I’m careful, but try not to give in to too much fear.
I’ll keep an eye out on this blog and will check back in after the 12/29 and second of two infusions. (My infusions are given in six months apart in sets of two two weeks apart, and I use my port from the chemo.)
Catherine
-
Agree- that it’s nice to get a little attention…
To Paraphrase Dr. Roach (San Gabriel Times) – “Of all the medicines that interfere with a vaccine, Rituximab (a chemo drug) is probably the most significant.” He says it’s best to get vaccine either before starting chemo, or to wait until 12 months after last treatment.
**Noted: Having IPF, and finishing Chemo with rituximab for Non-Hodgkins Lymphoma in my lung last April, I’ve somehow managed even with low or non-existent immunity to avoid catching Covid. I find it interesting how very little information is discussed with those of us who are immune compromised and at high risk, and often feel like I need to explain my heightened caution even though I have had two vaccines and have been boosted… (But to what benefit?!) Anyway, yes. It’s true, too little attention is brought to our community, and it is too bad. – As a former Special-Ed. teacher, I seem to have grown immune to the lack of attention given to those of us who make up a very slender percentage of the population.
-
Martha,
Not knowing what part of the country you are in or health care options available I’m not sure this will be helpful, but this may be of interest.
Having had two lung biopsies the traditional way (needle through back into lung), and a robotic bronchoscopy/biopsy, I would ask if it is possible to secure the latter. The Robotic Bronchoscopy/Biopsy does not pierce the lungs (goes through the throat) and is safer than standard biopsy. It can also go deeper into lungs than standard bronchoscopy and be directed to a specific site. I had never heard of this until receiving care from City of Hope in Southern California for dual issues: lung cancer/nodule and IPF. It was pretty amazing and doctor reported he was able to secure several good samples directly from targeted area in my lower right lung.
Catherine
-
A Big hug back to you Dear Gweneeth!
Anger at the disease, temper tantrums and pity parties… I can identify. Calling the doc for mild-antidepressant? Also considered! Hanging on to Jesus’ robe? That too. I chuckle over your insistence at getting people to identify what they want of yours and to mark it with blue tape. And… the best metaphor: ‘All dressed for a party that keeps being rescheduled.’ You have a way with words, and your upbeat outlook despite your circumstances comes through your venting. Thank you for that.
I am thankful you have good friends and neighbors in North Carolina to look after you. You touched my heart, and I encourage you to keep writing. Yes. IPF is known to worsen always; for some it’s generally gradual, for others it may be sporadic for spastic. I’m curious as to why you aren’t taking either of the two ‘approved’ IPF drugs. Maybe it’s your choice. I started perfinidone Sept. 30 and am now in my second week.
*Me: Chemo for Non-Hodgkins Diffuse Large B Cell Lymphoma in lung was completed six months ago, and now the focus is on treating the IPF which was first diagnosed in 2017. I’ll turn 71 this November. (Feels like a very long battle!)
Like you, my faith, family and fellowship with friends sustain me to a great degree, while fatigue and the guerrilla coughing spells sometimes drive me to personal pity parties. Usually the dark clouds part, and I welcome and am thankful for a new day. I hold your words to my heart, and I am most thankful you have an engraved invitation to the banquet. See you there.
Catherine
-
I have waited too long to respond! Thomas: Thank you for starting this topic. Frightening as it is, we become stronger when we can face our deepest fears.
Christie: You are delegated as a ‘participant,’ and I had to check. Your wisdom and kind responses made me think you are a moderator. You have the makings of a wise counselor. Thank you for that.
To: Betty, Steve, John, Jan, Jim, Julie and Donita with your responses and stories: Thank you as well. Your insights and suggestions are priceless. Donita, I hope you have energy to answer Christie’s questions, as they mimic my own, as I feel I am getting a handle on my mortality, be it near or far.
FYI: Cancer as a co-morbidity, even in remission negates options of lung transplant for five years, and a clinical trial for one year. I know. I’ve been declared to be in remission for a Non Hodgkins Lymphoma Large B Cell – Lung cancer since April. Unfortunately, as some of you may know, chemotherapy is not kind to IPF. I started Esbriet (perfinidone) one week ago, and am doing well so far. (70 years young and thanking God for every breath He gives me.)
Again, Thankful for your responses!
Catherine
-
Dear Thomas,
A pertinent question. The thought of ‘waterboarding, fish out of water,’ etc. is not especially enticing is it? State of mind, living and staying active are the focus here, and yet every one of us is more than likely keenly aware of our end of days and breath.
The thought isn’t as morbid as it is uncomfortable, but one we all will face. I don’t know the answer, and as a Christian, I don’t fear death itself, believe that it is God who gives us breath, and yet, don’t look forward to suffocating at the end, nor to subjecting loved ones to watching me suffer in that way. Would that my hardy heart would give way first!
So yes. Back to your question: What are ways that one can be made comfortable during that final stage? I am also interested in the answer to this question.
Thank you for bringing it up.
Catherine
-
Definitely interested! Especially after receiving news that Medicare has denied Esbriet for me. I’m not sure why at this point, and am in the very early stages of working with pulmonologist regarding an appeal. Alternative treatments and clinical trials that may reverse IPF are golden and close, yet far away! Hopefully those with Stem-cell successes will freely share!
Catherine
-
Christie,
Sorry to hear that early x-ray ILD symptoms were missed! I am hoping the lung transplant has and will provide her with many more years. Thank you for your encouragement and description of your mother’s case, as you say each case is different. I may not know what the future holds, but I trust in a God who does, and am blessed to be able to receive what I consider high quality care, even if they’re practicing!
C@ / Catherine
-
Chronic cough treatment, caught my eye.
Me: Diagnosed IPF 2018 / tumor of unknown cause found 12/2019 which grew to 7cm in lower right lung lobe / Diagnosed with non-Hodgkins Large B cell Lymphoma 11/2020 / Have undergone 4 of six chemo treatments, and have been dealing with unexpected continuation of chronic cough even after the last PET scan showed a significant diminishing of lung tumor.
I haven’t responded to this forum in the past, but realize I do need to applaud and say thank you to all the folk who do so. It has been helpful. Thank you.
I will be referred to a new pulmonologist (we changed health care systems) and when I see him/her I will definitely ask about Gabapentin.
Thank you.
Catherine
-
Joe,
I thought the same thing, as Covid-19 creates a ‘ground glass’ lung appearance typical of IPF. Perhaps some day… there will be an actual cure. One can hope, it’s just too bad the research is amped up for this horrible pandemic.
In the meantime we stay sheltered in place.
Catherine
-
Marilyn and Donald,
Marilyn – re: hypersensitivity profile blood test – Yes. The test was positive for a reaction to Aspergillus fumigates.
Donald – Since my ‘short of breath’ symptoms were first noted in 2013, with subsequent (numerous) PFT tests, CTs, 4 Bronchoscopies, 2 lung biopsies, and one robotic bronchoscopy. A nodule, or cyst was spotted in lower right lung, which finally (over one year later) was diagnosed as a Non-Hodgkins DLBC Lymphoma. This took center stage over general lung disease. I finished chemotherapy 4/8/21, and believe I am in remission; overall lung condition has gotten worse: fatigue and cough are my main complaints.
Care providers: I switched from Kaiser to City of Hope for Cancer treatment at the end of 2020, and have sought and received care from Cedars-Sinai for their expertise in Advanced Lung Disease. As to lab work and blood tests I’ve undergone? The list would fill pages, and yes: Lupus, RA and scleroderma were ruled out. Cedars is careful in stating my diagnosis of Hypersensitive pneumonitis is still preliminary, and they plan to discuss my case with a panel in the next week. I am thankful for their thoughtful consideration even though I find the diagnosis frustrating since even less is known about the condition and effective treatment of same than is known about PF or IPF.
This is why I am interested in hearing from others diagnosed with HP regarding recommended care and responses to same. I have not started recommended treatment Esbriet/Pirfenidone yet, and already I have questions about the ‘consent form,’ something I have never seen before. I have benefited from posts from folk here who have been taking it.
Age: 70 – Retired Educator (High School English Teacher).
Donald: re: prednisone – It worked well for me in reducing cough and shrinking the cyst in early days, and is a part of the chemo treatment I received. Not sure which is worse or better: Esbriet or prednisone for this condition, although the antifibrotic nature of the former seems to be more beneficial.
Thank you both for responding.
-
Charlene,
Thank you.
For now, I continue to benefit from information available in PF news, and appreciate the way you manage and respond with care and kindness to posts. I know you are a blessing to many. I look forward to hearing from folk diagnosed with the enigmatic HP.
C@