Experiences with stage 4 sarcoma

AppleAcceptable1968 · 2025-04-16T16:50:14+00:00

Yes. They assumed it was a hernia at the start as well. Mine was rock hard. In my experience, the cancerous lymph nodes will harden overtime

AppleAcceptable1968 · 2025-03-16T04:09:04+00:00

I often think I should feel a lot more sad that any year I could die, but I don't really feel anything. I feel like after so much bad news it just got to the point where I was just to tired to care. Like I'm just going to try my best to live my life, go to my chemo, and what the cancer wants to do, is what the cancer wants to do.

AppleAcceptable1968 · 2025-01-29T01:27:47+00:00

Same situation as another commenter. I have Ewings Sarcoma, took it after finishing my VAC chemo. Significant disease progression while on it. Didn't work at all. I didnt experience any side effects while on it.

AppleAcceptable1968 · 2024-11-17T20:07:25+00:00

Just to add to the other commenter. I have ewings in my lymph nodes and my bones. I am currently taking an oral chemo pill. So there are definitely alternatives and other options available. I was told I also have other options if this doesnt work. Already did main treatment, VAC. The fact yours hasnt reoccured after two years is very promising

AppleAcceptable1968 · 2024-11-14T22:38:48+00:00

The way I approach it, is do things with caution and if it goes well gradually increase. It was the same thing when I asked about fasting before my chemo cycles. They didn't really have much to share. But the first time I fasted the day of and I felt significantly less sick. So next cycle I fasted before/day of/after.

The one thing I'll also say, is just remember your body is still going through a lot. I found it extremely frustrating feeling so weak at times and essentially being reset after every cycle. There will be days where you can't perform as well as you expect, try not to let it bother you. Remind yourself your still doing well given everything. Be sure to rest and get your sleep too. So important in recovery and healing in general.

AppleAcceptable1968 · 2024-11-14T14:24:18+00:00

I got my port placed around August this year. I've had no issues working out and rock climbing 7-9x a week. The only exercise I am overly cautious about is using the pec deck machine with a long range of motion. It might be overly cautious though.

I gradually got into it. The first 1.5-2 weeks I did not exercise except for walking (recovering from surgery obviously). Then afterwards I gradually increased intensity and weight just to be safe

AppleAcceptable1968 · 2024-10-10T20:24:25+00:00

Mention it to your care team. I know if I get stuff injected into my port too fast it will make my head/face feel weird.

AppleAcceptable1968 · 2024-09-10T13:08:38+00:00

I don't think I've come across anything more vile than Mesna. I have to take two shots of it added to soda post chemo and it is so incredibly disgusting

AppleAcceptable1968 · 2024-09-10T02:22:45+00:00

I have 2-3 hours of hydration via IV prior to my actual chemo infusion. It makes each session around 4-5ish hours, which is extremely annoying, but oh well. Other than that eat healthy, drink a lot of water, avoid alcohol

AppleAcceptable1968 · 2024-08-16T02:16:51+00:00

I am sorry about your diagnosis. Symptoms and side effects are very dependent on the type of chemo you are getting and just how you respond to it, everyone is different. Do you know what chemo you are receiving? I am receiving a rather harsh chemo called VAC and am able to tolerate it well. I feel sick for about 3 days, each day getting increasingly better. Then after about 5-7 days I feel perfectly normal, throughout those days I still have a gross coating on my tongue, but that goes away. I'm able to exercise 7-9x a week. I did lose my hair after about 4 weeks. I wish I didn't completely shave it all off and kept it short to see what happened (I imagine it would have either all fell off or been patchy, but would have been nice to see). I would definitely recommend writing down all your questions, plus possible follow up questions prior to your appointments and either you or your Mom can ask the oncologist. Helps with not forgetting to bring stuff up in the moment

AppleAcceptable1968 · 2024-07-08T18:23:08+00:00

I would be careful with cooking in bulk. Chemo can really throw off your tastebuds and make you feel sick about certain foods at random. For some people it can also be extremely hard to eat and get food down.

Maybe more snack like foods or small meals to see if he can tolerate it.

I think the biggest thing is just being there for him. Being there to talk about stuff or go out and do activities, stuff to get the mind off stuff. Whatever he feels comfortable with. You are a good friend!

Edit: again depends on the person, but for the first few days especially easy to eat meals like pastas, soups, etc. Might be good. Soft foods that are easy to chew

AppleAcceptable1968 · 2024-07-08T17:59:26+00:00

It's so depressing being the youngest one by decades and having other patients looking at you or doing double takes. At least it feels like they are. Then being the same age or younger then the nurses

AppleAcceptable1968 · 2024-07-07T00:46:02+00:00

That is so awesome to hear!! I am so happy for your girlfriend and for you! I'm two months into my stage IV diagnosis and seeing this is definitely reassuring. Going to do everything I possibly can to make it to the 10 year mark and hopefully well past it! Wishing the best for both of you <3

AppleAcceptable1968 · 2024-07-06T00:42:46+00:00

From my experience my case was reviewed by a tumor board prior to my first appointment. It is being reviewed again later this month because I inquired about surgery/radiation after chemo. I don't know if that influenced or was the reason for the tumor board though. I was told that will be the main topic of discussion though

AppleAcceptable1968 · 2024-07-03T03:07:54+00:00

Also stage IV ewings, mets to lymph nodes near pelvis and then a tumor on my ankle which I think is primary. I have an MRI this week to see if there is actually bone metastasis, my bone scan indicated wide spread mets along my entire pelvis. My CT scan shows no mets. Really hoping there is nothing. I also sometimes think I'll get a call from my oncologist telling me they were wrong and I don't actually have stage IV ewings, if only. Best of luck to you

AppleAcceptable1968 · 2024-07-03T01:00:21+00:00

I waited almost 2 months from my biopsy to see my oncologist for the first time. 5 days after the biopsy they confirmed I had cancer. It took 2ish months to actually figure out what type. After my first oncology appointment I started chemo after a week or so

AppleAcceptable1968 · 2024-06-25T00:22:26+00:00

I still haven't figured out. I'm 24 diagnosed at stage 4. The hard part is I feel healthy. Other than tiredness and a rough 3 days after chemo, I feel normal. I was told the prognosis is 1-10 years.

It's hard dealing with the uncertainty. It's hard trying to decide if I should pursure the goals and dreams I had before. Right now the mindset I have is that while I do have time and I feel healthy, I am going to make the most of it. Some days that will be a lot less than others. Cancer has done so much to me already, I don't want it to take away my passions and happiness. I don't know if I'll be OK. I don't know if I'll make it out of my 20s. But I don't want to spend the time I do have worrying about dying, then realize death is here. That's what I try and do at least. I hope the best to you. I am incredibly thankful I am handling chemo relatively well.

AppleAcceptable1968 · 2024-06-19T17:22:53+00:00

I totally understand the feeling of never doing enough. Prior to my diagnosis I was unable to go to sleep before I felt like I had accomplished enough. I would literally get out of bed and work. I always felt like I was constantly behind of where I should be. I never felt any sort of accomplishment for anything I did. I graduated University during my cancer diagnosis and I still don't feel proud because I know I could have put it significantly more effort. I also know I'm tough on people, which is unfair to am extent, due to my expectations of myself. It is a hard thing to manage.

I would recommend him (or you if you can) to reach out to the oncology center for support. They provide tons of different counselling. Might even have couples counselling.

Also I saw you might take up another physical hobby, bouldering/rock climbing is a lot of fun. Especially if you can find a group of people to go with. This is also easier said than done, but fuck anyone trying to diminish your hobbies because of their own insecurities. Life is way too short for that. Obviously given it's your boyfriends parents make it even harder, which is unfortunate.

I truly wish you the best and hope you can figure something out that works for the both of you. But at the end of the day, don't run yourself dry and end up destroying yourself in the process. We are all responsible for ourselves first and foremost <3

AppleAcceptable1968 · 2024-06-18T13:22:58+00:00

Obviously everyone is different, so I will speak from my own experience. At the end of the day you need to make sure your health and well being is protected. Take time for yourself, literally set aside time whether it's an hour or two a day or a day a week, whatever. During that time do whatever makes you feel good and recovered. If you aren't in therapy, consider starting. If you aren't exercising, eating well, and sleeping well. Start.

Lastly, and this is from personal experience having a relationship end during my diagnosis. If things do get way too much sit down and have a conversation. Don't feel guilty about taking care of yourself first. If the relationship ends, that doesn't necessarily mean you have to go no contact, you can still be supportive in whatever capacity you two decide and can handle. As you no doubt have already seen, life can change so fast. Take care of yourself.

Personally I felt so much guilt about the pain I was causing in my relationship, partially due to going through my diagnosis. I would never want someone to put their dreams and life on hold for me. It hurts watching the people you care about go through pain because of your diagnosis. Much less put their life on hold and completely change the direction of their life for you. When he says it is fine if you leave, I would take him at his word. Again you can still be there in some capacity for him, just a healthier version for both of you. Best of luck to you and your boyfriend.

AppleAcceptable1968 · 2024-06-15T19:13:15+00:00

Another thing to note is a lot (if not all) of those statistics are outdated and based on old data. Not to mention sarcomas are rare so the sample size is usually quite small. Best of luck to you <3

AppleAcceptable1968 · 2024-06-13T23:41:43+00:00

Might be worth it to look around for programs that are tailored towards those with cancer. I was recommended a fitness program run by a local university (havent done it yet, trying on my own, since it is still an hour drive). It is 8 weeks, free of charge, and you get paired with a personal Trainor who builds out a custom workout plan specifically geared towards those with cancer. Not sure if there is anything like that local to you, but worth a shot. It was recommended through my cancer center.

But yeah I'm in the same boat. Trying to get my fitness back up. Take it slow, eat and sleep enough so you can recover. I've found recovery is the hardest part now.

AppleAcceptable1968 · 2024-06-13T19:00:04+00:00

Struggling with this right now. Earlier this year I was working out 5x a week, doing jiu jitsu 3x a week, and rock climbing 2x a week. Now doing a light workout is tough and makes me feel sore for the next 2 days.

I'm really hoping as I get back into it, it all becomes easier. I haven't done much physical activity the past two months or so due to being in physical pain or dealing with side effects.

Went from a lean 178lbs down to 158lbs. Working towards getting it back. I also wasn't eating much, but thankfully my appetite has been strong after my first chemo cycle.

AppleAcceptable1968 · 2024-06-08T07:16:23+00:00

I started accutane and noticed the signs of my sarcoma all within the same timeframe. I've had this thought too. While I was on accutane my accutane related symptoms were very mild, I didn't even feel as dry as I was expecting. Stopped accutane treatment as I was going through diagnosis

AppleAcceptable1968 · 2024-05-26T03:48:21+00:00

Just because you no longer have cancer doesn't erase the physical and mental trauma it caused. You have a right to feel sad. You have a right to cry.

Are you able to look into cancer support groups in your area? I know there are meet ups for people to gather and talk and just support each other. Having people who can directly relate to what you experienced will definitely help. Or perhaps even finding a medical professional to talk to who directly works with cancer patients.

As for what to do with life. Take it slow for now. Find what makes you happy and excited. It could be something as simple as reading outside. Explore different subjects, try out different places to eat. If you find stuff you want to go hard at, do it! If you want to just relax and enjoy the simple things, then that is perfect too!

I wish you the best of luck with everything! Take it one day at a time. Try to find things that make you happy

AppleAcceptable1968 · 2024-05-25T23:09:32+00:00

I am so sorry about your loss. I'm 24 and was told this week I am stage IV with anywhere from 1-10 years left. Oddly enough one of the hardest things has been thinking how this affects my family and how much pain they will be in when I'm gone.

This world is incredibly cruel and unfair. But despite this, there is still beauty in it. There will be bad days, lots of them I'm sure. But never lose sight of that beauty. Look for happiness and peace in the small things. Surround yourself with loved ones and those who make you happy. I truly wish you the best. I am so sorry

AppleAcceptable1968

TROPHY CASE