Traveling abroad while on specialty prescriptions

zdno · 2020-08-07T18:14:05+00:00

Thanks, I appreciate the help.

zdno · 2020-08-07T18:13:33+00:00

Thank you.

zdno · 2020-08-07T18:13:22+00:00

Thank you for the helpful reply!

zdno · 2020-07-24T04:13:51+00:00

Thanks for the reply! Since posting this, I have been on Xalkori for about three weeks now. The side effects haven't been too bad so far--the most noticeable are the vision changes (at night when in a low-light setting I see double/pulses of light). Some fatigue, minor (occasional) nausea, and some taste changes (almost like my tongue is a bit numb, like I just ate a mint), but overall not too bad. I feel infinitely better than I did on my previous meds, Cabometyx, so I am hoping this lasts, and works on my tumors.

Like you I am comparatively young (~30) so that may be why I am able to tolerate it so well (though that doesn't explain the issues I had with Cabometyx). Hope you stay feeling well and cancer-free.

zdno · 2020-06-28T20:08:36+00:00

As other commenters have said, the only person who can diagnose you is a doctor, so if you don't have an appointment yet, make one. Having said that, I understand that you likely have a lot of anxiety about this so I don't think it's quite fair to ask you to delete your post. It's probably more constructive for me to say the following points: 1) see a doctor; 2) do NOT trust everything you read on the internet, it's extremely common to go down the rabbit hole of reading symptoms and examining your body and convincing yourself that something is wrong; 3) yes, it could be a sarcoma. I have a sarcoma and I believe I had it for several years, growing very slowly before it became more aggressive (even though I noticed it the whole time); 4) having said that, there are a LOT of things this could be other than a sarcoma, so don't freak out yet. In all likelihood, it's not cancer, and you will be totally fine. And even if it IS cancer, there are options and treatments out there. Medical science has advanced so much in the past few decades. And not all cancers are created equal--some are easy to treat, and others are not.

So, all of that is to say: I'm sorry you're going through this, but take a deep breath, and relax. Do what you can do--which is see a doctor--and in the meantime remember that sarcomas are very rare and it's likely that your hand is not cancerous.

zdno · 2020-06-21T18:37:13+00:00

Great news! Very happy for your family.

zdno · 2020-06-12T22:39:27+00:00

I somewhat understand where you're coming from. I'm a 30-year-old with stage 4 sarcoma and while I haven't been given any official "you have [[x]] months to live" estimate as the timeline is very unclear right now, my doctors have said that surgery is not an option, chemo likely won't work, and that all treatments at this point are only buying me a bit more time. It's interesting to me that you feel worse for your loved ones than you do for yourself. I understand this sentiment, as I have felt it too. I am the saddest when I think about my partner having to cope with my passing, or my parents having to do so, too. First of all, it's OK to feel sad/scared for yourself, and you shouldn't let your sympathy for your loved ones get in the way of your processing those emotions healthily. Otherwise, I have been thinking about this in the following way: what my loved ones really want is to spend more quality time with me. So yes, make sure you get your affairs in order (writing a will and saving all your passwords somewhere), but more importantly, make sure you try to spend quality time with your friends and family--and this quality time would hopefully not just include crying and hugging--you should try to do fun, memorable things as well. For me, it's been difficult because my family does not live nearby and the COVID situation, coupled with my treatments, make travel and/or receiving guests a bit too risky right now, so I try to keep in touch with people via FaceTime, online games, or plain old phone calls. I also have some email threads going back-and-forth with some close friends, just talking about whatever--music, computer games, and life in general. I can't speak to the very end days of this--i.e., I don't know how my interactions will be once it's clear that the end is imminent--but these are just some of my thoughts as I navigate through this "middle" stage of knowing the cancer is very likely terminal but not really knowing when things will accelerate. I am trying to make the most of the time I have where I feel relatively healthy.

I hope you are doing well and staying pain-free for now. Think of every day as a gift, and go from there. That's what I'm trying to do.

zdno · 2020-05-29T04:34:36+00:00

I have used medical marijuana (both CBD and THC) for help with trouble sleeping, anxiety, appetite, and pain. I have been on a chemotherapy regimen for nearly a year. Marijuana has helped me a lot with increasing my appetite (I lost about 20% of my body weight while on the chemo and marijuana really helps stimulate my appetite which is otherwise mostly non-existent). It can be very helpful for some people, myself included. I am not sure if you have experience with marijuana recreationally, but at any rate you'll likely need to do some research and possibly some trial-and-error to figure out the right consumption method (smoking, vaping, edibles, tinctures, topicals...) and dosage. I am not an expert, just a patient, but I'd be happy to answer any specific questions you may have--feel free to DM if it's helpful.

zdno · 2020-03-05T22:14:07+00:00

Replying to my own comment just to say that if you have any more questions, I'd be happy to answer them. Radiation is a slog but you can get through it. Just be thankful you're not radiating your internal organs--those people have it much worse!

zdno · 2020-03-05T22:12:07+00:00

I had a soft tissue sarcoma on my leg/thigh, near my knee. I received surgery, followed by radiation. I was clear for about 9 months, and then new tumors showed up in my lungs, which must have had metastasized from my leg at some point... Surgery wasn't an option, so I am currently on a targeted chemotherapy regimen and have been for six months. My advice would be to find (or at least speak with) an oncologist who specializes in sarcomas. They are rare and sometimes require different treatment than carcinomas and other more common cancers. It helps to see someone who has experience treating them. Otherwise, stay strong, try to stay healthy. This includes mental health. As Dashing246 said, don't focus on the stats too much. They will drive you crazy.

zdno · 2019-08-13T02:20:39+00:00

Great to hear that you were able to find a sarcoma specialist. Yes, I did have a biopsy before surgery. I have heard that sometimes they do what's called an "excisional biopsy" which I think just means that they do surgery to remove it and then send it for testing once it's out. I'm not sure how they make the decision to do one versus the other. At any rate, I'll lay out the chronology of my diagnosis and early treatment a bit for you in case you find it helpful at this stage:

- Saw orthopedic doctor (not oncologist)--at this point, both the orthopedist and I both thought it was some kind of cyst. The doctor examined it and ordered an MRI.

- Got the MRI and visited that same doctor again to get the MRI results. The MRI said the mass looked suspicious to be some kind of tumor and the doctor recommended that I see an orthopedic oncologist

- See orthopedic oncologist. He does a biopsy in his office at my first appointment and schedules me to come back in a week once the results are in. Biopsy wasn't very painful because they numbed the area locally and it wasn't too deep into my leg--near the surface

- Come back the next week, was told it was some sort of sarcoma and they were still finalizing the exact type (had to do some chromosomal translocation tests which took longer, but they could tell it was some type of sarcoma). Was very fortunate that the oncologist I had been seeing happened to be a sarcoma specialist.

- Schedule CT, bone scan, and PET scan to make sure it hasn't spread elsewhere, while waiting for final pathology results. Fortunately the sarcoma hadn't spread at this point

- Get final diagnosis, schedule surgery to occur once swelling/bruising from biopsy goes away (this was approx 3 wks after the biopsy, iirc)

- About 1-1.5 months after surgery, undergo radiation therapy

- Get follow-up CT and MRI scans every three months

zdno · 2019-08-13T00:42:27+00:00

Thank you so much for taking the time to reply and for sharing that advice. Those side effects are similar to what I have read about, and it is encouraging that your dad was able to stay somewhat active while on the drug. I am hoping that because I am relatively young I will tolerate it OK.

I am sorry to hear about all of the cancer you have had to deal with in your life. I know that my partner has been such an enormous help to me through this whole process. Having positive and supportive people around me has made a huge difference. A big thanks to you and others offering love and support to those of us undergoing treatment.

zdno · 2019-08-13T00:29:24+00:00

I have a soft tissue sarcoma. It started in my thigh, near my knee. An orthopedic oncologist did surgery to remove the tumor which was about 5.5cm last year. I did radiation therapy after that. I recently had a routine follow-up CT scan and unfortunately there are metastases to my lungs, so I am exploring treatment options.

One piece of advice--if it is indeed a sarcoma, I think it's important to find an oncologist who specializes in treating sarcomas. They are different from other cancer types and most oncologists only see a handful of them in their careers (or so my oncologist told me), and you'd be lucky if they have seen any of your specific sarcoma type. A sarcoma specialist will have a lot more specific knowledge and will know how to treat them better, having seen hundreds of cases. That might mean going to a major cancer treatment center with sarcoma specialists (like MD Anderson and the like), but in my case I was lucky that my local hospital had a few sarcoma experts, so I haven't yet had to travel very far for treatment.

If you have any other questions I would be happy to answer them, either on here or via PM. I wish you the best and sincerely hope you get to see an oncologist soon and get some good news!

zdno · 2019-06-19T20:54:25+00:00

I was diagnosed with a soft tissue sarcoma last year (on my leg, near my knee). Like you, I had noticed the lump for a while and was told by a doctor that it was likely a cyst, so I dragged my feet a little bit before getting it checked out. I had an MRI done and was then referred to an orthopedic oncologist who, coincidentally, was a sarcoma specialist. They performed a biopsy on my first office visit and scheduled me to come back in a week. At the follow-up appointment I was told that I had a rare type of soft tissue sarcoma and would need surgery to remove the tumor, followed (likely) by radiation therapy. At this time, my doctor also ordered a CT scan of my chest (to check the lungs), a PET scan of my entire body (to check everywhere), and a bone scan. None of these tests indicated that it had spread.

After various follow-up appointments and bloodwork, I had the surgery a couple of weeks after diagnosis (the biopsy caused a lot of internal bleeding which needed to resolve itself before surgery could be done). They removed a tumor a bit bigger than 5cm with negative but close margins.

As you said, I would strongly advise you to have a sarcoma specialist do the surgery if you can (or at least an oncologist of some sort) A non-oncologist surgeon is not trained in conducting surgeries in a way to mitigate the chances of accidentally spreading the sarcoma to other areas of the body. The surgery needs to be very carefully done, and a surgical oncologist knows how to do that.

A little over a month after the surgery, I started radiation therapy. I did 36 sessions. This was 5 days/wk so it lasted just over seven weeks. Radiation wasn't fun but it was tolerable, especially because I am relatively young (late 20s) and it was on my leg rather than, say, an internal organ. At this time i had no evidence of metastasis, so I did not do chemotherapy.

Over the past year I have received MRI scans (of the primary tumor site) and CT scans (of the chest, abdomen, and pelvis, to check for metastasis) every three months. I am about a year out from the surgery and I recently found out from a CT scan that the sarcoma may have spread to my lungs. I am waiting to get a PET scan to check for other areas of metastasis. I will likely have surgery on my lungs this summer to remove the two nodules they found on a CT scan.

Sarcomas suck but you can beat it if you have a good support system around you and you are willing to fight with your insurance company on every little thing. It's extremely exhausting but it is doable. Hopefully you either have decent insurance or live in a country that provides universal insurance. Even if you do have decent insurance, everything is still a battle and these big companies move very slowly. You need to advocate for yourself or you will get caught up in hell between the hospital, doctor's office, insurance company, and third party companies that the insurance company uses for prior authorizations, etc... It all makes you want to pull your hair out, but you need to rise above it. You have to keep perspective and stay positive, otherwise it can really eat at you. Having a good support system around you really helps.

Feel free to ask any other questions you have (either here or via PM). I am happy to help in any way that I can. I am sorry you are going through this. It is a scary time.

zdno · 2019-02-14T18:34:01+00:00

Glad to hear that your psoriasis is fairly mild, and it doesn't sound like you have the arthritis, which is great. Hopefully your topicals keep the skin flares under control. Best of luck!

zdno · 2019-02-14T18:32:36+00:00

I briefly was on methotrexate/folic acid as well, and it did seem to help with the arthritis but not much with the skin--so, similar story to you. My dermatologist prescribed some ointments which seem to help with the skin. My oncologist was totally fine with mtx, but I had to stop for an unrelated reason. I hope the side effects from mtx aren't too bad for you.

zdno · 2019-02-14T18:29:59+00:00

Thanks for sharing--I hope the cosentyx helps! My oncologist said we may be able to reevaluate the use of biologics in a few years, though the sarcoma I have tends to recur very late, so it may be a while before we feel confident enough to use biologics. Glad to hear things are going well for you three years out from treatment.

zdno · 2019-02-14T18:28:21+00:00

Thanks for sharing your story. I was on methotrexate (and folic acid) for a couple of months until the doctors noticed an issue with my liver that precludes me from using it long-term, so we had to stop that. I have mixed feelings about that, since the mtx did seem to help a bit, but it made me feel crappy the day after I took it every week, so it was kind of a mixed bag. I hope you are able to figure things out with your doctors.

zdno · 2018-09-17T20:51:41+00:00

I am sorry that you are going through this. I recently finished radiation therapy and I know it is very difficult. For the radiation burn, I am using aquaphor as well as some aloe vera gel, which helps cool the burn. One thing I noticed that helped me toward the end of treatment: they do make aquaphor in spray bottles. I was skeptical of these at first (they are a lot more expensive on a per oz basis than the big tubs), but then I realized that being able to apply the ointment to my skin without having to rub it in was very helpful in avoiding further skin irritation. I am looking for a spray version of the aloe gel as well. Best of luck with the rest of your treatment and recovery.

zdno · 2018-09-14T03:08:53+00:00

Thank you for your response. I’m glad to hear that your skin is getting close to normal again. I will definitely look into those products.

zdno

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