Morning everyone š. I want to start off by saying that I am super grateful for every day that Iāve managed to live with lung cancer. Having gotten to hear the acronym NED this past September was a Godsend. In 2015 I thought for sure that I would be another lung cancer statistic and I am super grateful to Immunotherapy for having helped me get to that point. That being said...itās very frustrating dealing with the long term effects of a drug that saved my life...especially because no one knows what to do about these things. So far Iāve been plagued with 30lbs of weight gain even though I eat super healthy and get regular exercise....I have ongoing headaches that I canāt seem to get any relief from. My thyroid is laden with nodules that are causing voice changes, swallowing issues, and all the symptoms of Hypothyroidism but with no pharmaceutical relief (i.e synthroid). Iām making enough thyroid hormone but my thyroid doesnāt think so š. Adding synthetic hormones wonāt fix the problem. I now have to undergo FNA to check the two largest nodules as they have undefined borders blah blah blah. Add to that the inability to control my glucose. Every month itās gone up and this last check it was 178 fasting. Waiting for more labs to come back to decide what to do about that. Did I mention my cholesterol is out of control? 467 last test. My eating habits certainly donāt warrant that number. Iāve been off dairy for years, I donāt eat fried foods...thereās just no reason for it other than the Imfinzi. Then we have the neverending āweirdā rashes and infections. Every lymph node in my body is inflamed and Iām constantly being prescribed steroids. I finish one dose pack and something else pops up and I start all over again. The fatigue can be overwhelming and donāt even get me started on the diminished libido. My poor husband lol. I offered him a hall pass but he declined š„“. I walk around with a low grade fever (99.9-100.3) all the time and now my hair is falling out.
So yes...I am super grateful to be alive but super pissed that Iām experiencing every known and unknown side effect from the immunotherapy drugs I was given. Itās been over two years since my least infusion but what I was told is that those drugs get your immune system to work overtime to keep fighting the cancer...even after itās gone. The problem is no one really knows how long this will last. It could go on for years or end tomorrow. In the meantime, I canāt get clearance to have two very needed surgeries, (thoracic outlet release and breast implant removal) because my oncologist is afraid of what might happen with my immune system. I have a history with MRSA infections after surgery (one after knee surgery and two after each hip surgery) so of course he wants me to wait until I hit the five year mark to ārevisit the discussionā.
Like I said...Iām very grateful to be alive. Truly I am...but at what point does this get better? It just seems like itās one thing after the next. Oh! I almost forgot the most exciting little effect...the lacrimal gland behind my left eye is so enlarged and backed up that it must be drained or removed. Removing it means a lifetime of dry eye and artificial tears and draining it means 2 months with a drain in my eye with the hopes that it fixed the problem and doesnāt have to be repeated. They found a cluster of cysts back there as well so who knows what else they might find. Of course Iām allowed to have THAT procedure because if I donāt, blindness is around the corner. Do we know for sure that all these things are a result of immunotherapy? No...but no ones luck can be that bad can it? Maybe it can lol.
Ok, I just needed to vent. I feel better now and the truth is; even though Iām dealing with all this crap...Iād still take the immunotherapy drugs again. Without them I wouldnāt be here. That doesnāt mean I canāt bitch about it though šš. Thanks for listening to my whining and if anyone is having a similar experience Iād love to hear it.
Xoxo
Written by
ynkefan08753
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Long term survivorship is a new concept to many thoracic oncologists. Addressing a group of us at our Cancer Support Center, Dr Greg Kalemkarian, Chief of Thoracic Oncology at U Michigan, made a point of telling us that it was not a concept discussed when he was working on his medical degrees. It has only recently become part of the dialogue about lung cancer.
Many come here looking for answers and information that will help them make care decisions. Itās important that they have all information, good and bad.
Immunotherapy didnāt exist when I was first treated. I had the most aggressive treatment available at the time which was cisplatin/etopicide. 8.5 years later I am still dealing with side effects from treatment including neuropathy, tinnitus, profound (no longer debilitating) fatigue, compression fractures and more. Like you, I would do it again.
Fortunately there have been foundations like the Addario Foundation who long put the patient first.
VENT away and know you are not alone. I have some of the same medical issues you have and mine started after or actually during my treatment with Opdivo.
Like you I feel very lucky and thankful that this treatment saved my life and I truly believe without it, I wouldn't be here today. I'm Stage IV NSCLC and in 3/27 it will be four years since my diagnosis. I started with a brain met and also a pulmonary embolism...my outlook was pretty grim. I had CyberKnife, then Chemo and Radiation and was NED, but had progression and then moved on to the Opdivo. It was never easy for me. I was always fatigued and had a flu like feeling. I had GI issues and also developed low grade pneumonitis and ultimately had to stop Opdivo in August 2016. By then I was stable and have been ever since. And I'm very happy and lucky to be off treatment, but I don't feel good most days and I'm pretty sure it's all a long term side effect from Immunotherapy?
I'm now hypothyroid and on Levo, I also have one thyroid nodule that I need to pursue further. My Oncologist never even told me, I read it in my last CT scan and plan to address it if, it's still there on my next scan (in April). I have asked about it, but they said it's very common, small and nothing to worry about? But I wonder if it's partly why I have relentless fatigue? No matter how much I sleep I never feel rested. Zero energy or stamina.
I have horrible pain, primary in both legs, which they feel is neuropathy or nerve pain most likely from Degenerative Disease in my spine. I've had one hip replaced, but still have pain on that side. My legs hurt every day, even to the touch...the pain keeps me up at night and the more I walk or move, the more it hurts. I also have been living with Fibromyalgia for almost twenty years. None of the FDA approved Fibromyalgia meds work and I've done PT and Chiro for years, now it's not helping. Walking is painful and stairs are hard, but a must since we have a two story home. I also have two little pups who love to walk daily, but it's hard and so painful.
I've had bone scans to rule out mets and have been to two pain management teams who were no help and also had two different forms of treatment.
If I do too much one day, I'm exhausted for the next two even with extra naps. Every day is harder and my Oncologist doesn't seem to care? He insists that it's all Fibromyalgia, yet it's far different and much worse since the Opdivo.
I've met many others in support groups who all are now living with long term side effects from treatment and they all are grateful to be alive, but struggling with feeling lousy pretty much daily. Many have joint type pain and some now have RA or other Rheumatological conditions, but most are struggling with treating it. It's so frustrating and hard to find help and treatment or medical professionals who are familiar with Immunotherapy because these treatments are still relatively new.
I recently started trying medical marijuana (legal in my state) and I'm slowly trying edibles and CBD/ THC oil, hoping for pain relief. I know it'll take time, but I'm hoping it will be beneficial...I've run out of other ideas.
I feel sick and have pain every and struggle to get up and go every day, but I push to do it. it's not an enjoyable or fun life and that's hard because I should be out there living while I can? I live for my precious two year old granddaughter. I love her so much and want to see her grow up. She keeps me going, but I sure wish I felt better and could do so much more with her.
I hear you and can totally relate. I hope soon we'll figure all this out, so that we can truly live and enjoy our lives.
My heart goes out to everyone who is suffering because of cancer and treatment š
Hi Lisa. Thanks for sharing your similar experience. I wanted to address the thyroid nodule you mentioned. There was one that showed up on CT a couple of months ago and nothing was mentioned. Then I had a cervical MRI because of neck pain and they happen to see a nodule. When my ortho got the report he ordered an ultrasound. Turns out I have either 7 or 9 nodules. I canāt remeber now lol. Yes they are common....but the rate at which they grow and other things can make them suspicious and warrant FNA. It seems a lot of us who have been on immunotherapy drugs end up with thyroid issues. My new endocrinologist said that the thyroid and adrenal glands need to be monitored during and after IT and thatās why I had a full work up done. Iām hoping the results Tuesday give me some answers. Have you had any issues with blood sugar? I know 176 isnāt TERRIBLE but itās the consistent rise thatās bothersome. Also the cholesterol....
Iāll let you know what the labs show and maybe that will shed some light for you. Feeling unwell everyday is torture. Not the same torture as having lung cancer...but torture nonetheless. I wish you well šš»
I did mean to mention that twice on my last two Labs my Glucose was elevated but it wasn't a fasting glucose however it was way higher than normal like around 140 and 160.
The first time it was high they also ran an A1C and that was fine so the second time they weren't worried about it because it was also non-fasting, but it is something to think about because it definitely comes up with immunotherapy patients. I'll be interested to see what it is when I have my labs done in April.
And I do know that I need to check these thyroid issues further because I do think it may be part of my problem. I do remember you suggesting that I have an ultrasound and I do plan to do that I'm just waiting until after I get back from a long plan trip to California that I'm making in a few more days. Right now, I focusing on trip to see my son I don't want to think about any of this until I'm back.
Have fun on your trip. Youāve earned it. Iām sitting in the eye surgeons office now waiting to see about this enlarged gland in the back of my eye. All these odd things happening. Did I mention Iāve had a low grade fever for a week now? No idea why. All I know is itās wiping me out completely...
Hi Lisa. I want to address your fibromyalgia. I, too, have suffered with it for many years and was only finally diagnosed around 20 years ago. My primary physician recommended a controversial treatment with low dose Naltrexone. It is an off label use of an old and established drug. I have been on it for a little over a year and have been greatly helped. My daughter, who also has fibromyalgia, started on it around 6 months ago and has also been helped. Depending on where you live it may be hard to find a doctor willing to prescribe it. I am fortunate to have a doctor who is willing to think outside the box and an apothecary nearby that formulates it. It might be worth a try. The cost to me is around $30.00 a month and not covered by my Medicare part D, but well worth it for me. My oncologist looks sceptical, but says if it makes you feel better use it.
I hope this is helpful. Unfortunately cancer does not appear in a vacuum. Many of us have other medical issues as well which need to be addressed.
Thank you Jean! I will ask my PCP about this. He's an awesome MD and has treated my Fibro for years (ever since the Rheumy I once had retired). Plus I Prefer my PCP since he will often try to think out of the box. He had tried on Cymbalta (off label) long before I became FDA approved for FIbro and for about two years, it worked pretty well, but then just stopped, so I tapered off and have been on a Fentanyl Patch pretty much ever since. I had tried countless other pain meds, and I hated taken a pill (or several) every four hours, so for a long time the Patch was a life saver, but it's not very effective right now with this awful increase in pain, especially the Neuro pain and I can't tolerate Gabapentin or Lyrica, so I've been stuck. I am not on Medicare, but doubt my insurance would cover anything "off label", but it's if something that may help then $30 is nothing and well worth it. THANK YOU!
Lisa
PS: What is the dose that you are taking or the dose they started you on? I read a bit about it and my main concern is that it may stop the Effects of the Patch and that is something that I could not do without? I
I started on 1.5 mg and gradually worked up to 4.5 mg. The only side effect I have noticed is vivid dreams. Some people find it disturbing. It's worth it for me. Since we are on different medications you need to be aware of any drug interactions.
Can you take this up you are on a Duragesic patch (narcotic med). And can you have a cocktail or wine with dinner? You mentioned having to have it special formulated, I wonder if all pharmacies can do this?
I don't know about any interactions with the duragesic patch or alcohol. You might want to check with a pharmacist. The usual dose of this drug is several hundred milligrams, not 4.5 mg, so my apothecary makes up the low dose capsules by hand. Most pharmacies do not do this.
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Pet Scan results are back
Been wanting to write this for awhile
multiple new nodules on 1st CT scan after surgery
Recovering from a lobectomy
