Jump to content

Steroid Crash question....


Recommended Posts

Hello all. I'm a new member and would like to ask a question here. So I was diagnosed with Stage IV lung cancer that has metastasized to the lymph nodes and adrenal glands. I was scared about Chemo since I live alone. I went for my first chemo session last Thursday. I had a bad reaction to the 3 hour Paclitaxel infusion and they had to get me out of a very bad situation after 8 minutes, so I got 8 out of the 9 drugs they were going to infuse. After the Chemo - I felt fine. I felt fine on Friday, and then Saturday I felt great too and was thinking that if everyone responds to Chemo differently, that somehow I was immune to the negative aspects Chemotherapy, or that everyone else is whining. Boy was I wrong. At about 11 pm on Saturday, I felt a little weird and decided to lie down for a bit - all of a sudden, I had an experience I've never had before and felt certain I was dying. I felt I that whatever I was experiencing was anxiety and got up - finding out immediately that for the first time in my life, I was unable to stand. So I found myself on the floor of my apartment and couldn't walk and was seized with the thought that this was the end. I crawled to the door and was halfway out in the hallway crying for help. I flipped around and grabbed my landline phone and called 911 telling the operator to break down my self-closing door if it was closed by the time EMS got there as I was still unable to stand and think properly. Paramedics arrived and took my vitals and things were elevated a bit but not crazy. I got on the phone with the 24 hour hospital nurse who said my symptoms were consistent with something called a 'Steroid Crash'. The nurse was reading my chart on the other end of the phone and saying things like 'hmmm', 'yes', 'yup' to himself. He then said that I had received far more steroids than I would have normally received because of the Paclitaxel reaction and that he was fairly certain that I was experiencing a 'steroid crash' since steroids stay in the body for 2-3 days, that they were leaving, and that everything would be alright. I didn't want to spend another night in the ER and a friend came over and sat with me as the indescribable symptoms began to ease a bit. No one at the hospital informed me of the possibility of a steroid crash.

So - questions - has anyone experienced a steroid crash? If so - was that side effect discussed? What was it like for you? Is it something I should get used to during remaining Chemo sessions? Think it was due to the extra steroids I received? 

And to all on this forum - on Saturday afternoon I thought anyone who complained about Chemo was a whiner - I owe anyone who's going thru Chemo an apology for even thinking such a thought. Forgive me - it was the steroids talking. It is a living nightmare. My only real side effect so far has been loss of appetite and dizziness, which I would have signed on for in heartbeat. But it is so bad, it is becoming debilitating. I'm now terrified of getting the whole treatment, since I didn't receive the Paclitaxel during the first session and they will be switching to Abraxane for the next. 

Link to comment
Share on other sites

Hi mike 

Sorry I can't help with any answers about steroid crashing, I did find chemotherapy a bit of a struggle at times but when I was on dexamethasone steroids to reduce swelling of brain mets I had a terrible time with it and couldn't wait to come off of them, I really hope it doesn't happen again and you get through the treatment without to many problems 

All the best Justin 

Link to comment
Share on other sites

Hi Mike. I am so sorry to hear about these reactions that you had. What 8 drugs are you receiving? I have limited stage small cell lung cancer ( one nodule and hilar lymph node in the right upper lobe). I received radiation and chemo. My chemo was carboplatin and etoposide along with aprepitant(civanti) by iv, ondansetron(zofran) and dexamethasone(decadron) by mouth on the first day. Then etoposide along with zofran and decadron by mouth on days two and three. My only side effect was hair loss. I hope that the new drug will not cause another bad reaction. I would speak with your oncologist or another member of your team about your steroid crash. Praying that things get better for you.

Pam

Link to comment
Share on other sites

Why chemotherapy?  You didn't say whether is was Non Small Cell or whether is was Small Cell.  Maybe you have small cell thus the chemo right away.  Is the lung cancer a certain mutation?  Mine is EGFR.  So for Stage IV NSCLC with EGFR, I take targeted therapy which is Tagrisso.  Zero effects from this drug for the most part.  So I'm curious as to why you are on chemo.  My lung is the primary tumor, with spots on the brain, spine, ribs. 

 

Link to comment
Share on other sites

Hi Justin, Pam, and Kamoto!

Thank you for your replies. In answer to your question Kamoto - the initial diagnosis at my local hospital was Stage IV metastatic cancer of an indeterminant origin. Originally, it was incidental finding on an X-Ray. Then the CAT scan revealed a spiculated mass on my right lung - small - less than a centimeter. The original plan was to just remove it and because of its size - the removal would be the biopsy. However, a PET scan revealed masses in my lymph nodes, with the largest one being on/in my adrenal gland. So the idea that it could be metastasizing adrenal gland cancer, although very rare - couldn't be ruled out - but the course of action that my local hospital gave was Chemo/Radiation - and immunotherapy, although genetic testing would have to be done to see if immunotherapy would be effective. A bronchoscopy with tissue removal was done, and the results sent to one of the top cancer treatment hospitals in the country. The Oncologist there said it was NSCLC, and that chemo/radiation would be prescribed treatment with immunotherapy, however the immunotherapy had a less than 20% chance of being effective - depending on my genetic markers. The prognosis the Dr. gave me was; with treatment - 1-2 years statistically, but - however - anything can happen. A shocking prognosis considering that except for feeling tired, and a little weak (which I chalked up getting the COVID vaccine) - the ER hospital visit where the X-Ray was taken was for chest pain that was apparently the result of a strained muscle received from working out at the gym. The supportive care doctor told me upon my insistent questioning, that he'd never seen anyone go 4, and only a couple made it 3 years. So that's where I am. So why Chemo? Your question is ringing in my head right now given my current condition.

Kind Regards,

Mike

Link to comment
Share on other sites

Hi

I had chemotherapy (cisplatin/vinorelbine)for non small cell as first line treatment and it was given with curative intent,unfortunately the cancer had gone to my brain before I started the chemotherapy but nobody knew so in February this year I had a seizure and a couple weeks later had gamma knife radiosurgery on the 2 brain mets, my recent scan results were good for the mets, the tumor in my right lung and the 2 lymph nodes all showing good shrinkage so I don't think it makes any difference if its non small cell or small cell lung cancer it probably depends on what the oncologists want to try 

Many thanks Justin 

Link to comment
Share on other sites

Justin - many thanks for your comments! - and my true sympathy for what you're going through - I understand, trust me. But - am I wrong in thinking that medical science is still in it's barbaric stage and that 50 years from now doctors will be looking back wondering why the last generation did the things they did? (which has always been the case throughout the millennia BTW). I'm questioning the whole thing - I'm starting to feel that sending someone for a diagnostic test and reading back the results isn't really medicine at all. And that treatments are more like placing a chip on a roulette wheel. Perhaps it's our fear of death and our instinctive nature to swim frantically toward any possible life preserver that keeps us going.

Link to comment
Share on other sites

Hi Pam - So I received 9 drugs intravenously - but the main cancer drugs were Carboplatin, Pembrolizumab, and Paclitaxel - I had a severe reaction to the Paclitaxel - so they'll swap that out for Abraxane next time - I have to catch up on the Abraxane with two additional smaller sessions.

Link to comment
Share on other sites

Hi Mike.  Are you going to memorial Sloane Kettering?   If not, maybe get a 2nd opinion from them.  I’m not a Dr.   I just don’t understand starting with chemo when you don’t know your mutation type.  This is one of the must haves that the mods on this board will tell you is essential.  Can you find out for us if you know your mutation.  I’d hate for you to be in such misery when easier solutions are available.  My Tagrisso is targeted.  Will only kill egfr cells.  My rib and spine tumors seems to be reduced or gone in three weeks w no effects from the drug.  So I wouldn’t say medicine hasn’t advanced.  It has significantly.  Even radiation has, which is proton therapy but that isn’t available everywhere

Link to comment
Share on other sites

Mike,

Welcome here.

You report your biopsy reflected NSCLC but this form of lung cancer comes chiefly in 3 flavors: adenocarcinoma, squamous cell and large cell. Here is more information on the types of NSCLC. Some forms of adenocarcinoma respond to what is called targeted therapy. Kamoto reports taking a drug called Tagrisso that is used to treat what is termed EGFR, a mutation in his adenocarcinoma. These mutations are identified by a special laboratory test often performed after the pathologist identifies the type of lung cancer by what is termed a histology (microscope) exam. So two questions: do you know what type of NSCLC you have, and have you received results of biomarker laboratory testing? Here is information on biomarker testing. Targeted therapies only treat certain forms of adenocarcinoma, but immunotherapy can treat all forms of NSCLC and even small cell lung cancer. For immunotherapy treatment, the lab checks for PD-L1 expression. The level of expression is an indicator for the suitability of immunotherapy as a treatment method.

These days, most chemotherapy treatment is delayed until the lab analysis is received. Most, but not all. So I advise you ask about the laboratory results, particularly about the level of PD-L1 expression.

Steroid reactions differ from person-to-person and in my case, I had different reactions to steroids after infusions within a course of treatment. You describe a scary but fortunately rare reaction. My normal steroid reaction was time-phased. There was no sleep to be had the evening of infusion day and I ate everything in the house! Then about 2 days later, my energy level would crash. The crash could be attributed to steroids but also to the effects of chemo agents. Most importantly, this second reaction was short lived. I suggest you keep a record of this side effect onset in hours after infusion. My side effects followed a definitive time-phased pattern, occurring about the same hour after infusion. Knowing your pattern will help you plan to perhaps have a friend visit to check on you. Has you medical team suggested taking Benadryl? Some doctors suggest a prophylactic course of Benadryl to bolster against adverse side effects after chemo.

You mentioned survival statistics. Know that when I was diagnosed, I was given about 6 months to live. I had more than 3 years of constant treatment before I achieved our treatment goal, no evidence of disease, or NED. My point is if I can live, so can you. Here is more information on lung cancer survival statistics. Do listen to the embedded essay by Stephen Jay Gould, noted paleontologist, statistical expert, and long tenured survivor of normally lethal mesothelioma. You are not a mean or median; embrace variation!

Stay the course.

Tom

 

Link to comment
Share on other sites

Wow, Mike, what a terrible experience, and I can relate. I echo everything that the others have said. 

I'm a member of the 9/11 survivor community, having been an office worker downtown for many years. I've gotten qualified into the World Trade Center Health Program and have made my way through the requirements of the 9/11 Victim Compensation Fund. I don't know if you have a similar situation, but I can tell you everything you'd need to know. 

I was diagnosed with Stage IIIB non-small cell adenocarcinoma in October 2019. I had 6x chemo (carboplatin and taxol) and 30x radiation first. Biomarker testing showed I had an EGFR mutation (like Kamoto), and I started on the targeted therapy Tagrisso in March 2020. I've had No Evidence of Disease (NED) since April 2021. 

I tell you all this to stress how important biomarker testing is, so I hope you'll ask your oncologist if you have a gene mutation that is targetable by a pill. 

I never had steroid crash, but steroids did give me other side effects and now I have to be careful about oral steroids in the future. Did you get Benadryl in your infusion? That generally helps prevent a reaction to the chemo drugs. 

I hope you'll consider getting a second opinion. MSK in the city has a good thoracic oncology department. 

As for prognosis, my oncologist has never told me how long I have to live. I've been through some really rough times with my treatments (particularly radiation), and I'm just happy to be healthy again. Living one day at a time with gratitude. 

This group will certainly understand your concerns, and LUNGevity is a great resource for information. Stick with us. 

Link to comment
Share on other sites

Thank you, Judy and Tom -

It seems I have a lot to learn about this. I've done what the doctors have said so far and mostly my first chemo was ok except for the dizziness and lightheadedness that occurred after the steroid crash - (still to now, one week later). No nausea or vomiting or pain. But apparently because I had a Level III Reaction the Paclitaxel they infused more steroids to get me out of the nightmare situation that I was experiencing 8 minutes into the infusion only to lead to another one a little over 48 hours later. As I mentioned - the nurse on the phone informed me it was a 'steroid crash'. It came on very suddenly, in a matter of perhaps seconds with no warning. I'm terrified it will happen again and don't want to be alone when/if it does (the doctor today assured me it wont). It's as if every ounce of energy was drained out of my body in a matter of seconds - very difficult to accurately describe. I did get Benadryl during the infusion, and it felt pretty good. In fact - the next day I felt great, (because of the steroids I'm told). 

I'm not much of joiner, and not much of a forum type of a guy, but I thought I would post this to see if anyone could relate to the experience that I had. Apparently - if a person has never had steroids in their life - and then gets loaded with them all at once - this is a possible outcome. I guess. But the more I read - the less I realize I know.        

 

 

Link to comment
Share on other sites

Hi mike 

I know it's all scary have you got anyone who can stay with you after the chemotherapy or maybe stay in hospital for a while after the treatments just to see if you react badly again, goodluck with everything I really hope it goes better this time all the best Take care Justin 

Link to comment
Share on other sites

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.