r/sarcoma • u/RainS__ Synovial • 25d ago
New Diagnosis Needing help and insight about chemotherapy (Male 27)
Hi, I'm Male (27 years old) reasonably fit and healthy until I got diagnosed with synovial sarcoma about a month ago. I underwent surgery to remove the tumor located at my left armpit. Luckily highly local and no found metastasis from the scans.
My chemo treatment is starting in a few weeks time and will be given daily for 4 days and repeated every 21 days for 5 times. I'm receiving Doxorubicin + Ifosfamide + Mesna. I've searched it's also called the "AIM" protocol.
This is not something I know a lot about and would like to know more before my treatment. Has anyone done a similar protocol? How have you managed the side effects? A quick search online shouts that it's a hell of treatment and I'm bound to have the worst time; making me worried. Any chemo tips, heads up/what to expect, or personal experience with recovery is greatly appreciated.
Update: Thank you all for the generous response. I now get that it would be tough but not impossible especially with your valuable insights. I’ll keep this post updated as i move towards a cancer free life. Stay healthy, take care.
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u/timewilltell2347 Leiomyosarcoma 24d ago
I did a doxorubicin with dacarbazine and my best advice is 1) get a port if that isn’t already in the works and 2) stay ahead of your symptoms. Use a journal, or I use the notes app in my phone, and keep track of what happens on which days and when you take meds. Take the anti nausea stuff before you feel sick, and if there’s pain or constipation, stay ahead of those too. Missing AA day of pooping can easily turn into a week, and trying to get the pain down once it’s flared takes a lot longer. Knowing your good days in a cycle is really nice because you can plan something like lunch with friends or some outdoor time.
Communicate your symptoms to your team if the current meds don’t cut it for you. They can try different things (for nausea I’ve been through 4 different meds) or new ones (they finally just gave me adderall for the fatigue). I’ve been on a few different chemo regimens over the last 2.5+ years so the fatigue is very real for me at this point. I’m hoping this series of AIM kicks out any lurking squatters for you!
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u/CareBearVanilla 24d ago
I had synovial sarcoma in my foot. I was scheduled to have 6 cycles of AIM plus 8 days of radiation. Halfway through, I had my tumor removed along with my first metatarsal and big toe. After removing the tumor, I found out the chemotherapy wasn't doing much for me. My tumor wasn't growing, but it also wasn't shrinking. So we stopped the chemo at that point. So I only had 3 cycles.
I lost my hair after my first cycle. It started falling out in clumps, so I had my husband shave my head. I lost every bit of hair on my entire body. I mean even in my ears and nose. I also got thrush and mouth sores after the first cycle. They gave me a numbing medicine for my mouth called Mary's magic mouthwash. It helps numb your mouth so you can drink and eat without pain. I was also given liquid nystatin for the oral thrush, unfortunately I got it every cycle. After my third cycle my white blood count was 0.5 and my platelets were at 7. I needed a platelet transfusion. My heart rate kept going into the 140's because I was so dehydrated from not eating or drinking. So I had to go to the hospital for fluids during my 2 weeks at home. I was at the point of just drinking meal replacement shakes.
As others have said, take the anti-nausea medication, but watch out for that constipation. I wondered if the nausea or the hemorrhoids from constipation were worse. I honestly spent alot of time just laying in bed. I was absolutely exhausted. If you have a choice not to work during chemo take it. I am a stay it home mom so I didn't have to worry about the financial burden of missing work.
The first cycle I didn't walk around much at the hospital. I just stayed it bed. I have a double lumen port and they were hooked up to multiple IVs so it was just easier to not have to keep unplugging stuff. That was a mistake. I had so much swelling because they were giving me so much fluid all at once. The other two cycles I walked around every few hours and it made a huge difference.
If you made it through all that....Goodluck with your treatment. It felt like life was moving so slowly during treatment, but looking back, it actually feels like it was over quickly.
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u/Rare_Violinist_4726 24d ago
I did AIM prior to surgery- it’s a rough regime in terms of time each session takes. I did feel rubbish for a few days after each round ( I did 6 then 8 VIDE after surgery and radiotherapy) and it does get harder nearer the end as it’s cumulative. I worked week 2 and 3 of the cycle so it really was ok. Keep on the sickness tablets and eat little and often to keep the sickness at bay. I recommend nice and easily digestible foods ( no seeds or nuts and whole grain just because of the time time they take sitting in your stomach). Hair loss happened at round 2 for me- it’s not just head hair I freaked out because I didn’t know I would also loose that hair! I rate squash because my taste was affected and keep drinking as much water as you can to keep everything moving. Oh also, the white blood cell stimulator shots make you bones hurt- if its bad try antihistamines.
Just keep talking to your team- there are always people to help if you need anything or have any questions. I would get a thermometer so you can check to make sure you aren’t having temperatures.
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u/cmyorke 24d ago
I was diagnosed 6 years ago and went through surgery then radiation followed by 4 cycles of AIM. My doctor warned me beforehand that it was going to be rough and I should consider taking a leave of absence from work. I am glad I did. I would go to the hospital each day for my infusions, some do inpatient. My first day coming home I could not lift my legs out of the car. My son had to come out and get me out of the car. Then I could not lift my legs to get into bed. They made some adjustments to the dosage for day 2 and I never had that issue again. My sense of taste was shot, everything had a horrible metallic taste. Then the mouth sores started about a week in and the only thing I could eat or drink was water and boost shakes. The sores would get better the last 2 or 3 days before the next cycle then by about day 4 or 5 I had them bad again. I had neutropenic fevers with all four cycles, three of those I spent a minimum of 3 days in the hospital for observation and IV antibiotics for three of them. The fourth I was able to convince my doctor to let me stay home and did oral antibiotics. I had 2 blood transfusions and one plasma transfusion after my last cycle. I lost my hair on about day 15. Horrible aches and pains even with taking Zyrtec or others prior to Neulasta. The one thing I was not prepared for was the constipation. Make sure you are taking stool softener starting a couple of days before treatment and keep some citric sulfate on hand for if it gets too bad. I also lost about 40lbs during the entire time.
There is other stuff I'm sure but those are the low point for me.
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u/gitbeast Caretaker 24d ago
Ifosfamide has severe neurological side effects in rare cases. Typically it is administered in a hospital so you can be monitored for encephalopathy. If you are getting outpatient AIM I strongly recommend having someone you trust check on your mental state periodically. If they don't like what they see it's off to the ER.
I watched my mom go through this. It will be hard but you will get through it. She's alright now, NED 9 months. Good luck.
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u/jay-aay-ess-ohh-enn 24d ago
Here is the summary of the protocol that I shared with my friends/family to explain my experience.
https://www.chemoexperts.com/aim-doxorubicin-ifosfamide-mesna.html
Of the side effects, constipation was the one that hit me the hardest. I stopped treatments over three months ago, but I am still bleeding out of my butt every time I poop.
Some of the effects of the nausea medicines they gave me were almost as bad as the treatments themselves. I always took the Dexamethasone they gave me because I crashed hard when it wore off each cycle. I would pick and choose when I would want to take the Zyprexa because it would make me so drowsy that I couldn't even sit up.
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u/boundvirtuoso Synovial 18d ago
You might have given yourself a fissure. I say this because I did, lol. Miralax for a while helped to let the tissues heal enough to stop bleeding
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u/jay-aay-ess-ohh-enn 18d ago
Yes, for sure I did. I am doing good with fiber now, but it just takes a very long time to heal. There was nothing I could do during the treatment. I was taking colace and it did nothing. I didn't poop for a week every cycle and when it did come out it was hard as a rock.
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u/boundvirtuoso Synovial 18d ago
No for sure, I also could only fix it after treatment not during. Colace did nothing for me as well. Fiber can counterintuitively make your stools too big, which causes the rectum to need to stretch more. I took Miralax for a long time because it would soften the stool enough where eventually it could slip out without causing bleeding, might be worth a shot!
I couldn't figure out another solution and it drove me crazy, so figured if you were in the same boat the advice might help. Best wishes!
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u/jay-aay-ess-ohh-enn 18d ago
Thanks for the suggestion. I think things are finally starting to improve, but if I backslide I will give the Miralax a shot.
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u/boundvirtuoso Synovial 18d ago
Hey, I went through 4 cycles of AIM. Feel free to check my post/comment history and ask me any questions. I'm 26F. I'm really happy you had no spread and hope you have a full recovery!
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u/Faunas-bestie 24d ago
I (65f) did six rounds of AIM, each with a five day stay in hospital, as I was on a 72 hour drip. Some hopefully helpful tips:
Get up and move as much as you can. Each round I’d start with walking laps around the ward. Days 1-3 were great for that, by 4-5, I was wiped out. Rest when you need to.
Use baking soda and salt with warm water for the mouth sores. Keep up with your stool softener. Don’t wait till you’re pooping rocks.
I found days 9-14 were the worst, I was on a 21 day cycle. The last seven days I’d be out playing pickleball, literally every day of it and doing my daily yoga.
Try and go for walks when you can. It’s huge for fighting fatigue. You won’t want to, but once you get up and move, it gets better.
Stick to your coziest most comfortable clothes, sheets, pajamas and towels. Comfort is key.
Keep up your protein, fruit, and vegetables. I was having daily smoothies that consisted of: 1 container Chobani vanilla Greek yogurt 1/2 cup blueberries or black berries 1 T honey 1 T sliced almonds Ice
It really helped me. Sometimes I’d switch it to pineapple with toasted coconut, (instead of the berries and almonds. The toasted coconut was easy…and so amazing. (Toast on the stove in a dry nonstick pan)
Wishing you the best of luck. My lung Mets disappeared and for five months I was treatment free…then in all came back. Now I’m on Votrient.
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u/timewilltell2347 Leiomyosarcoma 23d ago
So sorry you’re back on treatment, but I’ve been curious about Votrient as it’s the possible next line treatment if the clinical trial I’m in stops working. Did it make your hair go white? Are side effects manageable?
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u/Faunas-bestie 21d ago
My hair did go white, but I’m equipped with brow pencil, mascara, and L’Oréal hair dye. The side effects are 1000% better than any of the chemos I’ve been on. I play pickleball most days, do yoga every day, and take a 30 minute nap at 3:00. I’m able to travel, live and enjoy like and after my first round, my tumors were dissolving from the inside out. Very good news. The bad news came when it was working so well, it created a hole in my lung and a pneumothorax. My lung collapsed but it’s since been repaired and I’m back on treatment.
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u/timewilltell2347 Leiomyosarcoma 21d ago
Thanks so much! I’m glad it’s given you a lot of life back!
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u/Georgian_B 23d ago
I had that same protocol following surgery for synovial sarcoma in the pleura around my left lung. Major fatigue was my most common side effect, but expect that most of the listed ones will show up at some point. Mouth sores were the most painful issue, eating was almost impossible until my doctor prescribed pain medication. Brain fog and fatigue have carried on long after treatment. Keeping emesis bags and tissues nearby is super helpful. Since Chemo can change the ph and impact all bodily fluids, saliva and mucus can become daily issues. The change with those made me more nauseous than I’d been during Chemo because nausea meds didn’t have any impact on the nausea caused by mucus/postnasal drip. My nausea during chemo was relatively managed by the medication regimen, it was mainly present during infusions. Post treatment I have to take Claritin-D daily to help with the head/chest congestion, despite not having allergies. Bathing wipes and a good shower chair are really helpful. If hair loss begins, once it really ramps up (constant shedding everywhere) I’d recommend shaving before you start losing clumps or large patches. I didn’t, and it was super traumatic. Also, chemo did change my taste buds. Some of it only lasted during treatment but a few changes remained following treatment. Once you identify which foods work well for you, stock up. It’s even better if they’re little/no prep. Many infusion days, the only food I could stomach was oriental flavor ramen, eating anything else made me gag. It was easy for even I was home and easy to pack when going to the treatment center. I’d just throw a pack into my bag and take a thermos of hot water so I could make it later. If you have any other questions I’m happy to help!
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u/ronak_oye 23d ago
My wife just finished her 5th cycle today. Same protocol
During her first cycle Ifos and doxorubicin were really hard on her body in terms of side effects.
Since her second cycle the oncologist have started adding alot of hydration in her protocol. This helps reduce the side effects a little. Heres her full routine.
Dexa in saline 100ml Mesna in saline 100ml - this marks the 0 hour of routine Mgso4 (hydration)in 500ml saline for 1 hour Ifos for 5 hours Mesna at 4th hour Kcl (hydration) in 500ml saline for 1 hour Doxorubicin for 1 hour Mesna at 8th hour.
6 cycles - 3 days each.
Note: yours may vary based off of your oncologist advice.
Keep your spirits qnd motivation high. Drink a lot of water. Like alott.. Play some games or watch movies as divergence therapy.
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u/NerdPrincess-531 23d ago
Get a stool softener and walk around a lot. I was inpatient, so took a Bluetooth speaker, diffuser, and candy for my nurses. Get antihistamines for the bone pain and be gentle with yourself. It’s hard, but worth the fight. 🌻🌻🎗️🎗️
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u/Swimming_Anything_27 22d ago edited 22d ago
My husband is dealing with Ewing's sarcoma, the first protocol was these 3 medications and 2 more (etoposide and vincristine). It can't be easy, but it's far from impossible. Sometimes doctors are more afraid because children tolerate doses of these medications better. See, it varies a lot from one person to another, but what can I tell you about my husband's treatment, some doctors thought he wouldn't be able to do it because it is strong and would have many side effects, they were afraid of febrile neutropenia and high toxicity, but there is one detail, as it will be the first treatment, his body is still very strong, my husband was treated with these medications for a year without having any neutropenia or a drop in platelets, he never needed to delay treatment. Now, with medication changes and having been treated for 2 and a half years, his body finds it more difficult to recover and is weaker than at the beginning. So I tell you, you can get it right, usually the first time it's easier to recover. Research natural things that help with the side effects, and especially a psychologist as the mind influences a lot, as you can change a lot, especially your body and it can be difficult to deal with or accept. Research the AEMK method, it is known in some countries and you can get it for free, it is not invasive, it is just a complement. Good luck
PS; My husband started treatment when he was 33 years old, strong and a bodybuilder
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u/Nebby1988 21d ago
I am so sorry for the diagnostic.I had it in 2023,the bastard was on my right tight stage IIC-IIIA,high grade G3 ,big tumor 10cm/9cm/14cm still local Thank God.I had 3 sesions of AIM regiment then 35 sesions of radiotherapy(do the radio please)killed it,got it to 3cm/1cm/4cm after treatment and then surgery.I had to do 3 more sesions of chemo after surgery but manage to do just one sesion because the chemo was killing me littery.We are diffrent so the side effects are diffrent.I lost my hair,didn't need blood transffusions,not so much mouth sores,but I didn't eat much because of the metal taste I had in my mouth.Try to drink lemon juice for the nasuea,eat as much as you can,sleep and have faith!You can beat it!🤗
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u/campnix 20d ago
I hate this for you. These treatments are very effective and the people who administer them find them very routine. Don't be scared. I think I did my husband a favor by always being in his face. So he slept when it was night, and my chatter kept him awake in the day. He even created a home office, did work and meetings. Maintain normalcy as much as possible.
Avoid narcotics.
The worst thing was constipation apparently from anti nausea meds. Sepsis from him trying to deal with it almost killed him.
So do what your mother (and nurses)would advise and take your stool softener and senna. Prune juice. Patience, gonna be tough, but it will be OK.
Oh and, my husband just tossed the head rags. You're just going to be bald, but alive. (Grows back) Much love.
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u/ami_unalive_yet 24d ago
I did the VDC/IE protocol which includes the AIM protocol plus a few other chemotherapy meds. My main side effects were low rbc and low platelets so I had multiple transfusions. Nausea was also a side effect but that was controlled with nausea meds. I also lost my hair during this time. If you have specific questions feel free to reach out!