Today marks day one for me on this site. I’m grateful to have found it. It’s nice to see so many others when I felt like an oddity. So here’s my story…
I developed some swelling in my ankle during my second pregnancy. Everyone I mentioned it to only contributed it to the pregnancy and the fact that I was on my feet all day while working. After delivery the swelling never went away. I was tested for a blood clot and when that came back negative I was told it was probably a cyst. The swelling eventually turned into a visible lump so I saw another doctor. An MRI was ordered and SURPRISE…you have Synovial Sarcoma!
After four MRI’s, CT Scans, a biopsy, and tons of labs it has been determined that it has not spread to my lungs (yet). The tumor is greater than 5cm, lobulated, and comprised of high grade cells. Recommended course of treatment is chemo, possible radiation, and amputation. I’m hoping that the chemo will reduce the odds of amputation but it doesn’t look great.
So…chemo should be starting this next week (YAY ME). Looks like 6-8 rounds are in order. Chemo will be administered 24hrs a day for 5 days in 21 day cycles. I’ve already placed a wig order (gonna try a new color or two) and I’m working on finding some help for my infant and 5yr old. Very curious how everyone who underwent chemo reacted. My doc makes it sound like I’ll be incapacitated for the next 4 months. I hoping that’s not the case!! I know it’s going to suck something terrible but I hope I can still manage to care for my kids.
Thanks for welcoming me and I look forward to chatting with you all.
My son was born just before my diagnosis and I had symptoms the whole pregnancy as well. Do get someone to help you with the kids the first 2 weeks of each cycle. The third week, you should be feeling good enough to care for them yourself. I had an amputation as well. It makes it more difficult to take care of the kids because you can't carry them (except moving on your butt) until you've learned how to walk with a prosthetic leg (which took several months for me) :-(
Hi Mandy
First of all, I like your spirit. That will definitely help you along the journey.
I am usually very tired the week after chemo and can’t do anything. I have a four year old and the only thing I can do is cuddle and watch TV with him. Please get someone who will help with cooking, cleaning, shopping, playing with the kids, taking them out, bed time stories, etc… Also, if one of them catches something like a cold, it would be better to have him/her away from the house for a little while. Your immune system is usually down for 10 - 12 days after chemo. Nulesta helps with this, but also leads to bones pain sometimes.
Welcome!!! I also had a surprise diagnosis, mine was after my tumor was removed from my neck, upon final pathology 8 days later, Surprise...
I wanted to wish you the best with the Chemo, I'm sure there are many here who can help you with what side effects you will have from it, I myself did not go with the chemo option in my case I just had 35 Radiation treatments. It is great to find a place like this where you know you are not alone in the world of rare cancers. Praying and sending you positive energy that your treatments get rid of this beast. I am 1 year and 7 months cancer free as of now.
Welcome! I know surprise diagnosis very well. I thought for years it was just tendinitis. Ignored it for far too long.
I never did chemo, refused amputation against all recommendations, and radiation was not an option for my 12cm arm tumor. I also do not have kids. With my very different situation I pursued alternatives that have kept my tumor from growing all this last year since my diagnosis. And it has never spread either. My doctor has pronounced it “100% stable.” Just throwing that out there. Every situation is very different, of course. Best of luck with your treatment choices!
I wasn’t really given a choice in the matter. It was kind like do this or die. I’m interested…what alternatives have you done that had created the stability?
Mandie, please remember that you always have the final say in your treatment. If you are interested in what I have been doing, please start at my blog Www.medicalmarijuanacancerpatient.blogspot.com and if you want to know more after that I am always happy to have an indepth discussion about my own treatment path.
You'll get through it but you'll need some help with the kids - Chemo can wipe you out but everyone is different. I'm surprised that they did not recommend surgery. SS comes back, over and over again. I had my original tumor removed followed by Brachytherapy and a 7 week course of radiation. I was cancer free for 15 years before it came back. I'm always a fan of 2nd opinions and aggressive treatment.
My tumour is also greater than 5cm but I don't know what lobulated means or if the cells are high grade. It's behind my left knee joint.
I'm being treated by a multidisciplinary team in the UK who have decided to use radiotherapy to shrink the tumour, followed by limb-sparing surgery which will remove the the tumour with clear margins, around 10mm of healthy tissue all around. So approximately 25% - 33% or my calf will be gone, but I get to keep my leg. I was surprised to read that you're having chemo as I have read that there is no proof that chemo really has an effect on sarcoma?
It's interesting to read about different approaches from different parts of the world.
Synovial sarcoma cells are always considered high grade. The use of chemo is controversial but some studies have shown it delays the return of the disease.
Welcome to the club nobody wants to be a part of. Chemo does suck something terrible but you can do it! You'll be down at least a week or so, but should feel pretty close to normal the last week before you go back to do it all over again. I'm currently recovering from Chemo round 5 and so far it's shrunk my tumors an average of 30%, which I need for a more successful surgery with clear margins. My tumors are in my lung and hilar lymph nodes.
It'll be tough with little kids so take any help you can. I try to cook more that third week that I'm feeling decent, stick some meals in the freezer for when you're down and out. I can't stree enough how important anti nausea meds are...that's a huge part of how you feel during recovery.
Wishing you the best. Keep us posted and ask any questions you may have. I felt like I knew nothing about chemo when I started and wish I knew then what I know now. Like, bring pretty smelling handsoap to the hospital, it helps with all the medicinalsmells and nausea. At least it did for me. :)
Thanks for all the info everyone! My doc said that SS responds favorably to these types of chemo drugs. The thought process of doing it is to kill any free floating Cancer cells throughout the body and hopefully cause the tumor to downsize for a more successful surgery with clean margins meaning I might be able to keep my foot and avoid amputation, although it’s not promised. We seem to have worked out a schedule of people to help with the kiddos and most are also great cooks. First round of chemo starts on Monday. CVC line went in on Wed and hurt like a heifer! Still trying to recover from that!
Good luck Monday Mandie! Hope it all goes well. Feel free to ask any questions that may come up, as it seems if it's not one thing, it's another as far as whatever new side effects pop up. Remember, everything is manageable and you don't know if you don't ask! You've got this! :)
Oh, and sorry your port hurt getting put in. You'll come to LOVE your port and realize how great it is when they can draw blood and push meds in. Saves you from a TON of pokes!! You won't even feel it after it heals, which can take a month or so (from the inside).
While I don't envy your chemo I hope you get the desired result.
Macmillan have published a bunch of recipes for people with cancer, like if you have a dry/sore mouth, or if you have difficulty swallowing, nausea, etc etc. It looks pretty yummy and there's nothing too difficult I don't think (I'm next to useless in a kitchen environment so I really mean it!) Here's the URL
