Is methotrexate similar to azacidine? Now the leukemia specialist is telling me that if they use the methotrexate INSTEAD of the azacitdine which I did so great on the 7 days/month, and instead of the ARA C and methotrexate to just use the methotrexate on everything does NOT sit right by me. I thought methotrexate was immune system thing NOT a chemo???? I called insurance company meanwhile and found out that having my azacidine infusions 3 days at Stony Brook and 4 days locally was covered with no authorization needed.
need answer ASAP. Re infusions 😳😳😳 - CLL Support
need answer ASAP. Re infusions 😳😳😳
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JerrysGirl3
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Jm954Administrator
This is frustrating and confusing for you. You really need to ask your doctor why they feel that this is the right plan, especially as you have been doing so well on ARA-C. I don't think anyone else can help. We can explain about the difference between the drugs but that doesn't tell you how that relates to you and your leukaemias and why they have changed your treatment.
Jackie
I was having azacitidine infusions for my AML not ARA C. That was supposed to be infused into my OMMAYA reservoir one day and methotrexate the second day. Two days a week with the right drugs. For my AML I have the azacitidine infusion along with venetoclax which was going perfectly til they found the aggressive rare TPLL in my brain/spine thus the OMMAYA reservoir. But it only has the T cells in it. No B cells so easier to figure something out.
Kerry, is there a doctor you trust the most? That doctor should give you the answers you need. I hope you found the answers by now. I think about you often and only wish you the very best🙂.
I tried calling my oncologist who saved my life but she had her own issues now with the loss of her great assistant. No. There is no one.
This is above my paygrade, but according to the Canadian Cancer Society, under chemo for AML:
"If the leukemia has spread to the brain and spinal cord (called the central nervous system, or CNS), chemotherapy may be given directly into the cerebrospinal fluid (called intrathecal chemotherapy). The drug used for intrathecal chemotherapy is methotrexate or cytarabine."
Sometimes chemotherapy is used as a regional therapy for a specific area of the body. Intrathecal chemotherapy is given directly into the spaces containing cerebrospinal fluid (CSF) through a lumbar puncture (spinal tap) or an Ommaya reservoir
From the US Leukemia & Lymphoma Society:
Methotrexate is FDA approved, alone or with other drugs, to treat people who have acute lymphoblastic leukemia (ALL) that has spread to the central nervous system (CNS) or to prevent ALL from spreading to the CNS. It is also FDA approved to treat people who have advanced non-Hodgkin lymphoma and advanced mycosis fungoides. It may also be used to treat people with other types of blood cancer.
I am not a doctor, so your own medical team will need to explain fully the "why methotrexate?" according to your case. As a lay person, it does appear that the key here is infiltration or spread to the central nervous system, which you know yours has. I would guess the plan is that Methotrexate will target the myeloid cells, plus any remaining B Cells & T cells at the same time.
In answer to your question, from what I read Methotrexate is a chemo drug and it appears it's a legit option when there's CNS involvement, but it's not considered chemotherapy when prescribed for inflammatory or autoimmune disease's, it is called a DMARD. Again I am not medically trained, check with your docs.
Hope it helps, if not please discard. Take care.
.
The brain spine infusion through the OMMAYA. In understandable. The OMMAYA was given because it ONLY has TPLL in it. T cells only. No B. That's why the OMMAYA. The AML is different. It's not ALL. It's aggressive AML. I was responding beautifully to the 7 day/month infusions and venetoclax. Why take me off and put me in methotrexate which is not even called for ? Just so I would have to travel ? I told them 2 days a week as ok. Now they said the local doctor can do the injections in my BRAIN!! He has never done it before. I'll be god damned if he's going to learn on me. The leukemia specialist lied to me !! I got FULL approval from my ins company to have the azacitidine treatments spread over a hospital and a cancer clinic. FULL!!! Then they wanted me to come in by myself for 7days and spend $2000 a week to stay in a hotel by myself 😳😳😳😳. Well that's not going to happen either. I had a migraine and panic attack this morning. I was sure when i got full insurance approval everything would go back to normal. It's gotten worse. I am sick to my stomach
The TPLL is the only cancer present in my spine brain thus the OMMAYA transplant because my regular infusions were not crossing the blood brain barrier. Sondifferent meds were needed to get in there. Methotrexate and ARA-C were considered those meds. Now everything has changed to methotrexate including my AML infusion . I want to why and I don't agree with the specialist.
I understand why you're frustrated and angry with your medical team. These are questions only your doctors can answer. I really don't know.
I'd certainly be asking if methotrexate and ARA-C are contraindicated and the reasoning why they are now saying just Methotrexate. As ARA-C can't cross the blood brain barrier, will just Methotrexate help stop the AML infiltrating the brain and spine? Write the questions down. You can make them accountable for their decision making by expecting clear, understandable answers.
A new med is beyond scary, when you've found one that works and the stakes are this high. You also have two rare cancers.
To clarify, is Stonybrook suggesting you stay as an inpatient for a week and then the local cancer centre take over all infusions?
If yes, doesn't that make sense? Won't it be better for you not having to travel that distance twice a week. They begin infusions to monitor your reactions & once they know it's safe and side effects tolerable your local centre can take over infusions under the guidance of the Specialist at Stonybrook. Have you had any reason before this to question the local centre with infusions before the OMMAYA?
I know you've had awful experiences at hospitals & your husband staying there with you is a problem. Is there anyone else that can help? $2,000 is a lot of dollars. What will be the cost of travelling to stoneybrook twice a week financially, and also the toll it will take on you physically, emotionally & psychologically?
You need to vent, you definitely need answers too, I also know you're strong, smart and ultimately practical so you decide what is best for you from the hard choices you've had & continue to make. I hope there's a swift resolution.
Will be thinking of you. xo
Just a quickie. Saw Stony Brook doc yesterday. He's like no no your infusions remain the same. The methotrexate and ARAC are only for the brain. If the other Chemo cant cross the blood brain barrier to get INTO the brain spine it should work the other way - metho and arac should not.be able to cross blood brain barrier to get out of spine/ brain. He told me local doctor is going to do the intrathecal even tho I said it was supposed to be done in a hospital setting and local doctor told ME he didn't do them. So that's that. If local doc doesn't do them I'm getting a lawyer and hope I don't die before I face them in court.
Do you know if the local doc even has an infusion room/clinic? Something considered a "clean room" with a crash cart available? That's where any "must be done in a hospital" older data likely came from. Some types of intrathecal therapy are even done in a patients home. IDK what good getting a lawyer would do; what do you think you could accomplish? If a doctor does not think they have the skillset or correct room to do a type of treatment, you can't legally force them to. It sounds like the doc saying "the local can/will do it" is saying, you don't HAVE to come here, and is assuming the local is willing. I bet they didn't speak with the local.
Ideally, a neuro-oncology Advanced Practice Provider does the treatment, but a practitioner who is confident in their sterile procedure skillset can do it. There's no Federal legal requirement I am aware of where someone has to be an APP to deliver this treatment, although there may be something at the state or a requirement by an insurance company.
mdanderson.org/cancerwise/o...
It's similar to how I wasn't Board Certified for Oncology care, yet I was doing oncology work. I got my training slowly, over time, on-the-job. Some did the fellowship right out of college, and could then start it immediately, since few places would otherwise let a newbie pharmacist be their dedicated oncology person.
He's done my BMB and can make a sterile room. It's just I had approval from ins company to have it done in both places and Stony Brook doc was being an asshole. To be honest. I was hanging by a thread today when I went to local doc. By a thread. I could barely function. And we walk into his office and he says with a straight face "I have to tell you right away I have never done the procedure so you'll have to go to Stony Brook (2 hrs away) for the 7 days. I looked for a smile and there wasn't any. For quite awhile. Then he smiled and said he was kidding. I said "that wasn't funny". However like he said. The old Kerry would have laughed and made fun. I said that person is gone. 😔💔 so anyway I am starting on Monday at his office. Two infusions on Monday and Thursday. And also 7 days of my old infusion azacitidine and venetoclax - hopefully it won't be too late as my rbc numbers were so bizarre I've never seen the like but my platelets and wbc were normal and hemoglobin was 9 and the methotrexate issue??? That was only for the intrathecal, taking away the ARA-C. I thought they were changing ALL of my infusions to methotrexate!! This all came from the Stoney Brook office. My scale on a 1-5 of that hospital is now a 2-3 better than Sloan which is a 0-1 😳 healthcare has changed so much it's disgusting. Afte the visit I went out to lunch and felt better. Still fried brain but trying to relax .😢🥺 hopefully everything goes all right with the methotrexate on Monday
I don't know what to say.
I am convinced that when doctors are unsure, instead of saying we don't know or we can't say, but here's what we do know ... the end result is instead of consistent reassuring information as far as possible, you receive contradictory, confusing & messages.
You are a rare and unique case, a Unicorn. I once got to tell a surgical oncologist he could do it my way or explain himself in person to a judge and sit in a cell with me. He chose wisely! If it's OK with you I'll save that story and message you directly when you're able of course.
Keep the faith. xo
lol. I'd love to hear it!! ❤️😝
All I can offer is that when I have a doctor change something up unexpectedly, I say, "I want a clear clinical explanation as to why that is now a better option than the one I agreed to before hand".
It puts them on notice that I am not agreeing to the change that they are trying to make without me saying it outright. I usually get a pause and then a better reason that is very thoughtful and medically accountable for the suggestion. If it makes sense, I then thank them and show that yes I'd be happy to make the change, but that's up to what you decide.
I took what you wrote and will approach him with it to start conversation. The methotrexate is very toxic to liver and to infuse it in both regular IV and OMMAYA brain/spine is a little unnerving.
My main point of contention is that not only has my local doctor not performed an intrathecal into the brain, it's is NOT ALLOWED to be performed outside a hospital setting. I'm not even happy with the methotrexate option. I don't understand why when I was doing so well he ups and changes it on me. If I was having side effects it would be another issue. But I wasn't. I don't trust the specialist or the hospital. He is a liar and a bully.
So you are so within the rights of a patient! I hope you success and a positive interaction.👍
Thank you. I hope so too. I have to keep my temper in check because I'm so angry 😡
People take methotrexate orally for arthritis. In addition to it being used for cancer. Toxicity depends, like other cancer agents, on the dose and how the patient reacts. Please don't look at a side effect profile and make treatment decisions based on that alone. FYI this drug is eliminated by the kidneys. Newer dosing regimens are being done compared to the past, to mitigate the toxicities of doses used in the older regimens. And once it was learned that patients needed folic acid therapy for IV and oral therapy, major toxicity decreased. You've been reading some older data I think. Modern monitoring looks for patients having problems, and addresses them much faster than what was done in the past.
ncbi.nlm.nih.gov/pmc/articl...
ncbi.nlm.nih.gov/pmc/articl...
journal-of-hepatology.eu/ar...
Yes. The folic acid was mentioned. The methotrexate is being used only in the intrathecal therapy so i was told it can't cross the barrier to get to them and that my dose is so low it would kind of work itself out inside the brain spine before reaching the kidneys. I might discuss the need for a lite folic acid iv....but first I have to see how I do on it regularly. Starting Monday. 🤞🏻🤞🏻
I used your line lol! I wrote it on a piece of paper. It turns out only intrathecal (brain) infusion was being changed to two infusions of methotrexate. Not all of my other 7 as well!! Thank you ❤️
I'm so glad they gave you a clear answer that cut some of the needless worries away from your burdens. You're a trooper, Kerry
P.S. Something else I thought of, seeing as information was passed without you be conscious, have your husband make it his number one job to record the medical discussions. Even when you are awake, they can be of great value when you want to recall terminology, doses, and other such information.
You're no slouch, but when you are upset, worried or unconscious you don't have the facts at hand that when you are feeling in control you can use for good communication and decision making. I go through the same thing. 🙂
That's a great idea but it will never happen. He "remembers". What he didn't tell me was that only stitches that were dissolvable were the ones underneath. That's the only sentence I remembered lol. I should have realized that the plastic things sticking up were stitches that needed to be cut. Husband can be difficult to deal with. Doesn't understand what is importsnt to know and what isn't. But I was talking and responding so everyone prob thought I was conscious !!!
sorry
actually turns out the "plastic stitches "Are dissolvable as well. I think she used the word "gut". It would be nice to have that in the handout that I was given o
LLS.org (Leukemia Lymphoma Society)may be helpful to get support and run things by others. I just looked at the sight and it seems they have different medical professionals that may be helpful to get feedback. It sounds like your care is very overwhelming and I hope you can get more support. Stay strong!💜
I'm afraid specialist will have access to it or will be alerted as happened with my Sloan thyroid doctor. I emailed info to a lawyer I had contacted because of botched thyroid surgery and suddenly the surgeon signed off on an operative report they had been altered in several places. 😳 I had all the originals as the week after surgery we were early and went to records dept and got copies of everything.
My husband had methotrexate, ara-c and Rituximab for his b cell cns lymphoma. He was admitted to hospital for months. The combination of meds was very intense, particularly the ara-c. They discontinued the ara-c during his final cycle because there was new evidence that 4 cycles was unnecessarily excessive. It's possible that your specialist has determined the same for you.
Either he wants to see how you respond to methotrexate alone or he believes you have had enough infusions of the cytarabine/ara-c. Chemo regimens are adjusted, that's not uncommon. That's why you have a doctor treating you rather than just being prescribed a generic regimen and sent home to take the meds yourself. You can ask him to clarify his reasoning via email, that way you have a paper trail if anything goes wrong.
I haven't started ANY chemo neither my old infusions/pills nor new. Was scheduled to start new today into my brain. Twice a week- once of methotrexate and once of ARA-C!!! Now he wants to infuse me regularly for 7 days a month with the methotrexate and also inject into my brain with methotrexate twice a week til forever!! Too much methotrexate floating around. And the ARAc was part of the flag Ida that almost killed me in January. When I asked about the difference in dosing it with the flag Ida two additional chemos, and by itself in the brain , he was like oh no no no. It's a much lower dose. I don't believe him anymore.i almost died from that flag Ida treatment Like Sloan. Everytime a BMB test result came back it listed different cancers found 😳😳. I have no clue what I have and don't have. When Sloan did the lumbar puncture and 28% was found to contain only TPLL, no B cells, the report also mentioned that they really didn't have enough cells to work with on other parts of the test. So they screwed that up as well! What would be my restarting my regimen on Monday has turned into a nightmare. I have everything in place - insurance agreed to two locations doing the infusion. They had NO issues. This fricking doctor has suddenly changed the rules and the meds and I think it's for the worse. And my local doctor, I feel, is being forced to go against his oath. This specialist is very well known. To go against him would be like a death sentence. But by going along with him makes it a death sentence for me. Sounds like it didn't go over well with your husband either
My husband's dose was adjusted for the better. He had an unbreakable fever, shakes and body aches during his final cycle so his consultant decided not to give the last dose of ara-c. His methotrexate levels were closely monitored and he had an iv fluids infusion 24/7 to prevent toxicity. The methotrexate was supposedly the key medicine and he was already disease free by that point. His consultant made a judgement call which worked out for the best because he's still in remission 2 years later.
I also want to add, and hopefully this reassures you, that my husband's Venetoclax and Rituximab was stopped once he started getting methotrexate and his CLL has not been detected in his BMB since. His most recent BMB was about 18 months after he stopped Venetoclax and it was clear. Methotrexate wipes everything out, though my husband also had a stem cell transplant as consolidation. But he was in remission from everything prior to his stem cell transplant and he hadn't received any chemo or treatment for about 3 months. His lymphoma was aggressive and had grown in less time than that prior to starting chemo, so its safe to say that the methotrexate did its job in his case.
Also, not having an adequate sample is possibly due to damage to the cells or dehydration rather than an error with the collection method or analysis. Your report is going to include a lot of details about the quality of the sample, not all of which is actually conclusive of what type of cancer you have. So if they have given you a verbal diagnosis, I would go with that unless you get a different one from a different doctor, rather than trying to interpret the report on your own. My husband's report says all sorts about blasts etc, but he only had the two cancers.
From what I understand, the methotrexate is given on a 4 weekly cycle, with infusion for 1 week and 3 weeks break. That's what my husband received. And it seems that because your cancer is likely to recur/aggressive, your consultant wants to consolidate by giving you regular infusions on an ongoing basis. It is used to treat different blood issues, like arthritis. They adjust the dose depending on what they are trying to treat.
It is inconvenient to have things adjusted last minute. Just when you accept one plan, they hit you with a curve ball! But hopefully this adjustment will be for the better, not the worse. Contact them again and ask them to give you a written explanation of their rationale for choosing this regimen. That way you can process it in your time and go back to it again and again. They should also be able to show you articles explaining your treatment protocol that is digestible to a layman. It's difficult to take in the information when you are unwell and trying to coordinate your life around your treatment.
I have CLL. AML, TPLL and MPAL ( not sure of spelling. ). All aggressive acute cancers but the CLL and the last two are rare and aggressive as well as the AML. I just went on Stony Brook site and they cancelled all my infusions into the brain and handed it off to a doctor who has never done them with no cancer hospital nearby. I am totally freaked out. It's like I can't get out of this nightmare. You can die if done incorrectly 😳. And no place to take me if it goes bad. SB said they would do the infusions. That why I went there. Now they cancelled everything. because I had insurance approval to have my other infusions done in both places. Now they cut me off completely and changed my meds completely when I was doing excellent on the other meds. They are going to kill me. You watch and see. And I'm not being dramatic. SB had the PAs etc trained in the procedure to go into my brain. 😳😳 in a hospital environment. I am really and truly done. Doc will not comply with my asking. I will ask but there is nothing in writing. All done by phone. Smart cookie. And,,,I believe plastic stitches need to be cut. I think the inner layer was dissolvable. But again. This time the surgeon team never told me or told me when I was still under the effects of anesthesia with no room for memory. All $$$$$for them
So it turns out the methotrexate change was only for the intrathecal (brain/spine ) infusions. The other 7 days of infusions will remain the azacitidine and venetoclax pills. They are taking out the ARA-C and replacing it with the methotrexate. All good.
I can't go into the hospital again. I just can't.
hi Kerry x just want to send you a big big hug x this is way out of my league. X your knowledge is incredible. Just keep fighting and getting them to tell you their reasons x you really are incredible xx 🤗 ❤️
Thank you. 😔❤️
I feel like I can't get the chemo soon enough. I'm really slipping downhill 😳. Memory. Talking. Sentences coming out of nowhere that mean nothing. Incomplete snd confusing sentences in posts. I know my body. It is not well. 😢 I've got four days til Monday when I restart. It can't come soon enough. I'm really afraid I will be too far gone to reverse to where I was after two sessions when I felt great. It's probably the TPLL in my brain. That since July was supposed to be treated twice a week and wasn't. I had to bring it up cos docs let it fall by the wayside. Just like when I told the surgeon about how scared I was of the ARA -C which suddenly got changed to two doses of methotrexate. Weird!! I was told two months without treatment. Well. Here I am. At two months. Plus the stress of this last week. I'm surprised I didn't have a stroke. 😭😭 my whole personality has changed.
My personality completely changed for a short while, and it’s very very scarey. You must feel exhausted fighting, but even if you do, keep pushing them with what you are saying to us. Like people have suggested, ask them to put why they have suggested the other treatment in writing x you have been so amazing x we are all rooting for you xxxx
Thank you Pearl Pink for sharing your "personality" story. Makes me feel better. My surgeon hasn't even entered HIS operative report. Th assistant wrote the "brief operative report". Shades of Sloan when the same thing happened with my thyroid cancer specialist! But then again. He was referred to me by a Sloan doctor.
I don't know if it is too late, but, years ago, there was a fund that helped patients pay for the hotel when my husband was being treated at a hospital in a city where we did not live.
re: IT chemo (lumbar punctures) I had some inpatient and some outpatient but they had what they called a "procedure team" that did them in both instances......the outpatient clinic is attached to the hospital.
however, it was the nurse who works closely with my hem/onc doctor who actually delivered the chemo. It was not the procedure team that did that.
the chemo varied.....methotrexate some times and cytaribine other times....with maybe something else added..
You sound like you are very afraid and I am so sorry. I hope you can get what you need, and soon. all my best.
Thank you. In post above to SofiaDeo I explained further that everything was worked out.
Hello, JerrysGirl3. You've gone through so much. I'm sorry you have had to deal with all of this. Just want you to know, I continue to pray for your strength physically, mentally, and spiritually. I hope you can rest easier now. Big long hugs 🫂
Thank you. I am well aware that everyone's prayers have been a definite lift to my ability to continue fighting. ❤️❤️❤️
JerrysGirl3 - Your posts on what is and what isn’t happening is the first post I look for when I log on. You are determined to understand what is going on and your doctors are just going to have to adapt to offering explanations, not just orders. I can understand you wanting to get things going on and not being in a joking mood.
You go girl!
Patti
I literally thought I was going to die when he said that. And held a straight face for quite awhile 😳😳 Honestly. I'm still not sure he knows how to do it but I have faith in him figuring it out before Monday if he doesn't.
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