13 yo daughter w/soft tissue sarcoma

Hello, my name is Cherri (like cherry). My daughter Lauren was diagnosed with soft tissue sarcoma in Dec 2009. She initially participated in a clinical trial using doxorubicin/ifosfamide combo plus 31 pelvic radiation treatments. The primary tumor is located at the bottom of her spine, wrapped around her sacrum and has been considered inoperable. After dropping out of the clinical trial in May (she was supposed to have surgery to remove tumor at week 13) for not following protocol, she started more inpatient chemo using carboplatin/etoposide combo. After 4 rounds of that protocol, her disease is considered stable. The mets to her liver, gone. The mets to her lungs are all but gone (one 9mm nodule remains). We believe she has become multi-drug resistant and have switched her over to alternative/complimentary care in hopes that bringing her treatment back to nature will have a more positive affect. She is currently being treated by a naturopath doctor and has been on this plan since October 2010. She has a PET scan coming up in two weeks and we'll have some idea of whether the new plan is working.
I know she is on the lower end of the "age requirement" for this site, but I kinda feel like she has had to grow up so fast this past year that she really fits in quite well with the site, the ideas, etc. and I hope that she and I both can connect with parents/kids/survivors

Cherri
Advocate for kicking cancer ass!

Comments

  • 15 Comments sorted by Votes Date Added
  • hey, my names taylor and i'm a 17 year old brain cancer survivor. it seems like your daughters case wasnt nearly the same as mine, but for any child/young adult having to go through treatment and dealing with such a brutal disease...i know how tough it can be. when i was diagnosed, i was a few days away from my 10th birthday. I missed a couple years of school so it was kinda tough...and i deffinately had, what seemed like a week, to grow up and learn that i had to keep fighting, take things seriously, and never give up. :) i hope everything goes well with your daughters treatment. i wish you all the best through these tough times.

    ~taylor
  • Thanks Taylor! It is a lot of pressure on young kids when they should be living carefree lives, enjoying their youth. It's something you can never get back either. You have to find that place that makes you comfortable with this. Comfortable enough to move on and live your life. I think support from your peers is where you start. NONE of Lauren's friends know what she is or has gone through. I am hoping to get her signed up here or at the very least, find information here that will help me help her :)

    -c
  • KabirKabir Community Member
    cherrichiodo;561 said:
    ...I think support from your peers is where you start. NONE of Lauren's friends know what she is or has gone through. I am hoping to get her signed up here or at the very least, find information here that will help me help her...
    Hi Cherri,

    I understand the level and intensity of the pressure on young children when an impact of this magnitude strikes their life at this age because I am in that age group currently! What I’ve been through, until children don’t get some true friend(s) to share their problems with, they start taking everything negatively and they feel alone because they cannot discuss/ask everything with their parents and that’s where friends count the most. What I would recommend that you must tell your daughter’s best friends about your daughter and what she has been through or encourage her to tell them. But I would recommend you/her to talk only to her best, close peer group or friend or let her and encourage her to talk to them as they will seem to understand her the most as they are the closest people to her in the school. You must tell and encourage her peers to talk to her and provide her support in school and vice versa because the influence a best friend or a close peer group has on the mind, no one (sometimes even parents and teachers also) can match that level of influence. Also, if they seem to understand, they can help your daughter to catch up with her studies, help her with what she has missed and help her cope up. Also, telling a whole group is not necessary as even one friend which she can absolutely trust can help her, maybe even more than a group of friends. Your daughter may wish to tell specific friends and/or groups because she will be the most comfortable with them. Let her decide on this matter and encourage her at every step.

    I wish you best of luck and best wishes.

    If you want to talk or chat, please feel free to add me on Facebook, Skype and Windows Live Messenger.
  • Kabir, I agree, it's nice to have just one person outside your family to talk about it, partly because you're around your family so much when you're a kid getting treatment and it's good to know someone different. ;) It's hard though because kids are SO judgmental at this age, as I'm sure you know... I was diagnosed with thyroid cancer at 14. I know I told my one friend who didn't go to my school, but she had known me since 3rd grade and I'd had some health problems then so this was sort of "normal" to her, and so it was easier for us to talk about it. To be honest though, I don't think I told any of my friends at school. I think they knew I had surgery and at one point I was on the low-iodine diet, but I don't remember them really taking any interest so I didn't elaborate. It was really lonely. Eventually the next year I befriended one of my teachers and SHE is still the first person I go to to talk about health issues; she gets the serious side of it more. Even in 12th grade, so we're supposedly over the cliquey drama, I missed a lot of school and when I came back only one of my friends talked to me (her and another "friend" who decided to talk to me because she was jealous I missed school... yeah, that went over well). The rest of the school avoided me like the plague. I had my thyroid surgery in the summer so it wasn't super obvious what was going on unless I chose to tell someone, but this time was different. I knew they were just afraid of what to say or maybe that I was contagious, but it still hurt. I was already pretty close friends with the nice friend who did talk to me, but we became even closer after that.

    So... I don't have any advice, really, I just sympathize with both of you.
  • KabirKabir Community Member
    Reply

    Colleen, I absolutely agree with you. Kids are judgmental and so much that they don't give things another chance and just go by their pre-assumption. Cherri's daughter will face such people and kids but even one great friend in school and at home may fulfill all her needs. And there must be a friend circle or a friend that will be with her. And eventually, her reputation will build amongst others and she will have more friends but that will take some time. For example I do have friends who have known me since Prep! If she has some old faithful friends, she must tell them the whole truth.

    Cherri, I read the link on your signature. I want to congratulate you for your daughter's improvement! My best wishes and support are with you.
  • cherrichiodo;471 said:
    Hello, my name is Cherri (like cherry). My daughter Lauren was diagnosed with soft tissue sarcoma in Dec 2009....We believe she has become multi-drug resistant and have switched her over to alternative/complimentary care in hopes that bringing her treatment back to nature will have a more positive affect. She is currently being treated by a naturopath doctor and has been on this plan since October 2010.
    Ask naturopath if she can take free form L-GLUTAMINE. It's the most abundant amino acid in our body. It has many benefits, very neuro-protective, promotes enterocytes (G.I. track cells, good stuff) and more. It cured my peripheral neuropathy and myalgias during chemo. I took 30-40Grams/day during chemo and now only 10Grams/day. Just put it in your fav juice in the am on empty tummy, as directed on package. The free-form part is important, not the capsules. If it's taken with a B vitamin it's absorbed better in the body. If her Onc says it's ok then do it! I LOVE it and some Onc's in Los Angeles are starting to tell pts this. With the naturpathic remedies I formatted my question to my onc like this, "Is there any reason why I SHOULDN'T take this?" That way you can avoid contra-indications as well as making the inquiry easier to understand for our Western medicine trained Oncologists, haha. I always like to run things like this by all my Cancer Posse, not just one doctor but for all angles and spins from all sides so that you can make what feels more like an informed decision, together. BIG LOVE!
  • Kabir Sharma;1596 said:
    Hi Cherri,

    I understand the level and intensity of the pressure on young children when an impact of this magnitude strikes their life at this age because I am in that age group currently! What I’ve been through, until children don’t get some true friend(s) to share their problems with, they start taking everything negatively and they feel alone because they cannot discuss/ask everything with their parents and that’s where friends count the most. What I would recommend that you must tell your daughter’s best friends about your daughter and what she has been through or encourage her to tell them. But I would recommend you/her to talk only to her best, close peer group or friend or let her and encourage her to talk to them as they will seem to understand her the most as they are the closest people to her in the school. You must tell and encourage her peers to talk to her and provide her support in school and vice versa because the influence a best friend or a close peer group has on the mind, no one (sometimes even parents and teachers also) can match that level of influence. Also, if they seem to understand, they can help your daughter to catch up with her studies, help her with what she has missed and help her cope up. Also, telling a whole group is not necessary as even one friend which she can absolutely trust can help her, maybe even more than a group of friends. Your daughter may wish to tell specific friends and/or groups because she will be the most comfortable with them. Let her decide on this matter and encourage her at every step.

    I wish you best of luck and best wishes.

    If you want to talk or chat, please feel free to add me on Facebook, Skype and Windows Live Messenger.
    Thanks Kabir! Lauren does have a close circle of friends, altho some have fallen out of the circle. It's hard to be a teenager, much less be a teenager and have a life threatening disease. I have explained to her, with a heavy heart, that throughout your life, you will grow apart from people you thought you could never live without. Does that make it any easier, no. She would also rather everyone forget she has cancer. She has gone through her room and pretty much got rid of everything that reminds of her of cancer and/or the time she spent getting chemo/radiation. On a good note, she writes like crazy in her journal so I know she is venting somewhere.
    Colleen;1622 said:
    Kabir, I agree, it's nice to have just one person outside your family to talk about it, partly because you're around your family so much when you're a kid getting treatment and it's good to know someone different. ;) It's hard though because kids are SO judgmental at this age, as I'm sure you know... I was diagnosed with thyroid cancer at 14. I know I told my one friend who didn't go to my school, but she had known me since 3rd grade and I'd had some health problems then so this was sort of "normal" to her, and so it was easier for us to talk about it. To be honest though, I don't think I told any of my friends at school. I think they knew I had surgery and at one point I was on the low-iodine diet, but I don't remember them really taking any interest so I didn't elaborate. It was really lonely. Eventually the next year I befriended one of my teachers and SHE is still the first person I go to to talk about health issues; she gets the serious side of it more. Even in 12th grade, so we're supposedly over the cliquey drama, I missed a lot of school and when I came back only one of my friends talked to me (her and another "friend" who decided to talk to me because she was jealous I missed school... yeah, that went over well). The rest of the school avoided me like the plague. I had my thyroid surgery in the summer so it wasn't super obvious what was going on unless I chose to tell someone, but this time was different. I knew they were just afraid of what to say or maybe that I was contagious, but it still hurt. I was already pretty close friends with the nice friend who did talk to me, but we became even closer after that.

    So... I don't have any advice, really, I just sympathize with both of you.
    Thanks Colleen! She does have a really good relationship with her school counselor that started about 6 months prior to diagnosis with the death of her best friend. Its been a rough couple of years. She has been thru what most adults never even experience.
  • Kabir Sharma;1640 said:
    Cherri, I read the link on your signature. I want to congratulate you for your daughter's improvement! My best wishes and support are with you.
    Thank you! It was a huge decision to step away from conventional therapy. We made the decision based on the fact that our goal was always to cure. Faith plays a HUGE part as well. =) We couldn't be more pleased with the results.
  • 9 yr old daughter with embryonal sarcoma of liver (soft tissue sarcoma)

    Hi Cherri-
    My daughter was diagnosed with embryonal sarcoma on Labor Day 2010. Her tumor was on her liver, it was totally removed, and them chemo began...treatment with a Ewings Sarcoma protocol. WOW. The chemo was rough, we are at #10 of 14 tx. She has handled them well, minimal side effects, and has an attitude like this whole thing is simply an inconvenience (praise God). I also think that I am raising a pediatric oncologit in the making, she takes such an interest in the ,edical stuff. It's hard to watch her struggle at times, and the fact that she has cancer scares me out of my pants most days. We have met other familes who are wonderful, but none who have a cancer similar to Olivia's . Let me know if you ever want to chat, feel free to get in touch!!
    Take care, Sloane
  • Hello everyone!

    I just wanted to update everyone on Lauren. In May 2011 the lesions on her liver and in her lungs were gone! A small level of metabolic activity remained in the primary tumor. I cannot tell you how happy we were.

    Fast forward 6 months ... Lauren had her follow-up PET CT last Thursday. While there is no longer any metabolic activity within the primary tumor (YAY!!!) they found 5 new tumors in her lungs, all 3cm or smaller. This is a huge setback emotionally but both the team at CHO and her ND are optimistic that we can get rid of these new squatters.

    I'd be interested to hear anyone with experience with sarcoma and mets returning. Its frustrating, to say the least, to get so close to "NED" to only be knocked back a few steps.

    We (Lauren and myself) plan on attending the OMG! Summit next spring. We cannot wait!!!
  • Update: As of mid March, there are 4 remaining tumors in Lauren's lungs. The largest was removed in December for a biopsy and sent off for gene/target now testing. She started chemo the second week of December (gemcitabine/gemzar and docetaxel/taxotere). Shortly after the first of the year, results started coming in from the tests, ironically showing that she was resistant to the gemcitabine. Recommendations were to go with doxorubicin (or some of you may know it by adriamycin). Unfortunately, Lauren had a lot of this drug (almost too much) back in 2010. Crazy as it may seem, she has been showing regression and as of mid-March, the tumors that were 2-3cm in size are now 5mm (after only three cycles). She is currently on her fifth cycle, hoping to only need six. She will be re-scanned at the end of May. After she is finished with chemo, we'll be switching her to an alternative holistic approach with some "outside the box" treatment plans. The statistic that scares me the most? "Only 20% will survive a sarcoma relapse" ... I want her to be in that 20%

    We attended the OMG2012 Summit in Vegas and had an absolute blast! We look forward to OMG2013!!!!
  • Sloane:

    Could you try to get in touch with me. My 19 year old daughter was diagnosed with a large pelvic Ewing Sarcoma three weeks ago. She started treatment yesterday at Sloan Kettering. I would appreaciate any positive words that you could share with me and with my family. Thanks so much. John LoConte (Locogio)
  • Hi John, I remember how scared we were when Lauren was first dx. We've since lived through two relapses. I'd be more than happy to chat with you anytime about anything. I'll PM (private message) you my email address.

    -cherri
  • Cherri:

    How is Lauren doing since your last post. I know that she had been receiving chemo and that you had turned to alternative holistic treatment as well. If you have a free moment, if you could point me in the direction of the alternative treatment, that would be great. I don't want to take up a lot of your time, as I know you must be busy. Perhaps you could forward some links to me via facebook messaging or via my email [email]locodrjohn@aol.com[/email]. Thanks you, and I can even now appreciate the huge investment in love, hope, and care that you have given to your daughter and yourself on this journey. Thanks, John
  • Hello, a couple days ago, I posted a thread on here about some products we used for my fiance that had sarcoma in his thigh a few years ago and helped. I have copied & pasted it here. Don't know exactly which products worked but something did. I was told that the Marine Phytoplankton, ProAlgaZyme & Maitake mushroom can be used as preventative tretment & have also been known to to even kill cancer cells. Hope it helps you :) God Bless! -Alexis



    Hello everyone,

    My name is Alexis & just thought I would share my story & what we did that helped our situation. Maybe it will be a blessing to someone else. My name is Alexis & about 5 years ago my fiancé found a lump on his thigh & had it removed & biopsied. The Dr. called with the results saying that the mass they removed tested positive for sarcoma cancer. He then had to go back and have more of his thigh tissue removed to make sure all the tissue in his thigh was clear of the cancer cells. Needless to say, after removing it the first time, the mass ended up growing back and over an extended period of time, he needed a few more surgeries to clear it all out. That situation was the biggest scare of our lives as he was only in his early 20’s & we were told that he is pretty lucky given the type of sarcoma cancer it was. When all this happened I did extensive research online & wrote down everything & anything I could do & products I could get him that could help. After doing so, I went to the health food store & bought everything pretty much available that they said might help & put it on my credit card even if it meant putting me in debt. I didn’t care at that point. After making him take all this stuff along with a healthy diet, eliminating as much sugar as possible as I have read that cancer cells feed on sugar, a lot of heart felt prayer & attaching our faith to it, we went back to the surgeon & he said that he didn’t know what we were doing but to keep doing it because the tumor was actually shrinking. It had shrunk a whole centimeter. The surgeon was pretty shocked. He did end up having his last surgery to make sure they got it all just to be safe and thank the Lord, he has been cancer free ever since. Just wanted to share what helped us in our situation and I pray that it will help you too. Here are the products in detail we used. I bought all the items at Sunflower Market (I think it is now Sprouts Farmer’s Market www.sprouts.com) & just used them as directed on the bottle. He used them up to a month after everything came back cancer free & is no longer taking them but if you wish to continue taking them long term maybe talk to your Dr. to see what they recommend. If you have any questions I would be happy to answer them he best I can [email]LiveWell2037@gmail.com[/email] God's Blessings & Health to all of you!!!!!!!

    -Super Nutrition Men’s Blend Antioxidant Rich Multi-Vitamin (they also have a women’s version) (was told by someone who worked at the vitamin department that this specific brand has been proved to help kill cancer cells)

    -Solaray Maitake Mushroom with Reishi & Shitake Mushrooms 600mg. per capsule

    -Nature’s LifeD-3 2,000 IU It says on the bottle Natural Cholecalciferol Bone Health 120 Softgels

    -(comes in a dropper bottle) UMAC-CORE Marine Phytoplankton Concentrated Marine Phytonutrients

    -ProAlgaZyme FOR TOTAL BODY HEALTH Biologically Active Algae Supplement (on the bottle is has a website also: www.ProAlgaZyme.com www.mypazcom)

    -(comes in a dropper bottle) HERBS ETC. Alcohol Free ChlorOxygen Professional Strength, Chlorophyll Concentrate 36 drops = 100mg (added a packet of Stevia sweetenter & it seriously tasted like sweet tea)

    -Bottle of Powdered Spirulina and added daily dose to a smoothie. It made it taste better. You can also sprinkle it on food.