Amanda R :) from California - Dx 2009 - RIP March 2015

[Amanda]

Hello Arch,
I hope that we did get it early and time will tell us if we did.
But, unless i added it wrong it is a tumor that is 5.76. My margins were also all clear but i was told that it is not abnormal for them to be clear and that it still may have spread *sigh*
I will be calling to set up the radiation today for monday to start.
How is your husband feeling? How are you holding up thru this?

*hugs*
Amanda R

[Fictional]

Amanda,

If the tumor is larger than 5.0 cm, which was the case in our daughter's situation, then as difficult as it may be, it's worth looking into options for clinical trials and possibly additional surgery. Nothing to do yet until you know definitely, but doesn't hurt to be informed.

We have had to fight denial in this business, and we think it has help 'K''s health over all. Metastases usually first go to the lungs. The most sensitive way to detect them is fine cut spiral CT, next sensitive regular CT, and lastly chest XR. 'K' has had all 3 studies at various points, and I would say spiral CT allowed us to detect lung metastases maybe 9 months sooner than a regular chest CT, and CXR is worse for this. Spiral CT does use more radiation on average, so its best when its being used for specific purposes. It has helped us map size of nodules, detect new ones, and also somewhat response to therapy.

When our daughter was first diagnosed, she had 3 pinpoint dots thought to be "nothing" - possibly from a prior respiratory infection. They grew after about 6 months, with a big jump occurring with the first chest CT after the primary was removed (rebound growth factor effect?).

We all know the curses of ASPS, but there are also blessings - it seems people can feel pretty good for a long time although they have metastatic disease, and some few people can even clear their metastatic disease either almost completely or to the point it seems like a chronic disease.

It can get out of control though - especially if the total tumor burden in the body becomes too great.

[Amanda]

Hello Everyone,
I have a question... Sence we do not know if the six things in my lungs largest being 0.5 and spread over both sides of my lungs and the rib are cancer yet. Is it ok for me to do this radiation? Or could this make things in my lungs and other places worse?

Let me know what you think please.

*Hugs to all*

Amanda R

[Fictional]

Dont really know the answer to this question for you. ASPS is relatively radiation resistant. Most lung tumors with ASPS are not treated with radiation. Don't know about the rib lesion - that could have more risk of spread.

Radiation seems to be used more often with bone metastases.

0.5 cm does not seem that small - our daughters pinpoint ones initially were 1-2 mm.

Higher or more concentrated XRT (e.g. gamma knife) does seem to be effective in slowing growth or sometimes killing off ASPS in that location.

[Amanda]

Hello 'F',
thank you for responding so fast to my post.
So if i get the radiation to my calf it may raise the risk of this spreading from my rib?
I was never told that the 0.5 was big so this was hard for me to hear But, the truth is what i am here for and thank you for your honesty <3
I wonder why the surgen seemed to not be concerned that makes me concerned to be honest.. The last two days have been very tuff on me trying to make decisions and trying to be happy and hide this fear from my child. I really hate ASPS! I just want every thing to go back to the way it was before i was diagnosed.

Thank you again!
Amanda R

[Olga]

Dear Amanda, 'F' is obviously so happy to be able to find Sarah and Sarah's mother and be able to share with us their story of the very good treatment with the gemcitabine only (tge market name is Gemzar) that she has misread your message, she obviously thought that you ask if the lung and rib mets can be treated by the radiation when in fact you asked if the radiation treatment given to the after primary resection margins could cause the increased growth in the mets (if they are the mets which we all hope that they are not). So she is telling to you that "Most lung tumors with ASPS are not treated with radiation" which is true, we had a case when multiple lung metastases were treated by the tomotherapy (which is a subtype of the radiation) but the damage to the healthy tissue of the lung was to great and she actually died from the complications.
There are no cases when people reported that in time of the radiation for the close margins their mets have experienced fast growth although it is hard to say as there are not that many cases when radiation was used after the primary resection.

[Amanda]

Hello Olga
Thank you I am having two days of feeling upset and sad over all this and trying to pull my way out of it and be happy me again but i know you understand this is hard. I read the post a few times and i was confused but blamed it on myself for being such a big baby about being diagnosed with ASPS. Thank you so much for letting me know. I dont blame her by the way i read her post about the conversation she had tonight and it made me happy! Thank you both and everyone for always being here for me when you can! I know that all of you are also fighting this and the fact that you take the time to reply I apreciate very much! <3

*hugs and prayers to all*

Amanda R

[Fictional]

Oops. Olga, you are right. I did read it wrong.

Don't know of any case where getting the radiation caused trouble to distant tumors. Many doctors don't think it helps though. If there are negative margins there is a relatively low (10-15%) chance of recurrence in ASPS. Usually if there is a recurrence, it is not a big deal to resect it again. ASPS does not tend to grow back aggressively at its original site.

Time for me to head to bed!

[Amanda]

Hello
Is anyone doing Flax seed and ground flax? If so omgosh! I made it this morning:

Johanna Budwig’s Flax Diet:
Breakfast (lunch, snack, dinner) Muesli
Layer the following ingredients in a deep bowl from bottom to top in the following order:
(a) 1 – 2 tablespoons freshly ground flax seed blended with honey (optional)
(b) Any fresh fruit in season – sliced or diced
(c) Any ground nuts (no peanuts)
(d) Cream topping comprised of 3-4 ounces of low-fat cottage cheese, 1 teaspoon
honey, 1-2 tablespoons flax oil, 3 tablespoons raw or organic low-fat milk. Blend
For variety you may add fruit or juice like banana, lemon juice and orange juice
(mix 2 to 1), other.

Ok, i know and everyone has told me this is great for fighting cancers. but YUCK!!
I put it over bananas and black berrys and blue baries.. and YUCK, lol

I am forcing it down as my child and boyfriend are laughing at me!
Is anyone else doing this and if so how do i make it not gross =P

Or does anyone have an opinion on this?

Ok, back to forcing this down...

*hugs*

Amanda R

[Amanda]

Hello ,
I got a call today that they want to do a CT guided needle biopsy of the inner part of my 8th rib to rule out if this has spread there. Because it is on the inner part of my 8th rib i am frightened They said it may pop my lung. Has anyone had this and or know about this and should i be so frightened about this?

*hugs to all*
Amanda

[Bonni Hess]

Dear Amanda,
I would be concerned about the doctors doing a needle biopsy because if the concerning spot on your rib is heartbreakingly an ASPS met, the needle biopsy could potentially spread the tumor cells when the needle is inserted into the tumor and then withdrawn through the surrounding tissue. When Brittany had a suspicious spot on her breast and the doctor had ordered a needle biopsy we refused the procedure because of our concerns about spreading the cancer, so the doctor surgically removed the entire lesion instead, which unfortunately did turn out to be an ASPS tumor, but at least Brittany wasn't subjected to an unnecessary biopsy, and the tumor wasn't penetrated with a needle risking more spread of the tumor cells. I think that this is an issue/concern which you should discuss with your doctor before proceding with the biopsy. If it is a tumor, it will show increased growth in subsequent bone scans, and then it can Hopefully be surgically removed or ablated with Radiofrequency ablation or Cryoablation. This is of course my personal opinion, and since I am not a doctor, it is something which you should discuss with them. Hopefully others on this Board will also be able to offer their opinions and share helpful information to help guide you in your decision. Take care dear Amanda and keep us updated as you are able.
With special caring thoughts and continued Hope,
Bonni

[Amanda]

Hello Bonni
Your fear of spread is the fear i also share and i am due to have another CT on May 2nd and i think that after talking to my doctor tomorrow i will decide to tell him i will not do this biopsy. I talked to my chest surgen and he is also agenst the biopsy and said that if this is changed in the next CT then we will remove either the area of the rib or remove the whole rib. I feel also that this would be a safer plan.

Thank you for taking the time to post to me Bonni with all that you are dealing with at this time!
Please, when you get time post how every thing is going with Brittney.

*hugs and healing*
Amanda R

[Bonni Hess]

Hello again Amanda,
I am glad that you are proceeding cautiously with making a decision about the rib biopsy, and I am grateful that you sought the opinion and advice of your chest surgeon. I personally feel thatsome doctors are too quick to order biopsies without weighing the risks of the procedure regarding possible spread of the tumor cells. If the concerning lesion is on your rib, wouldn't it be more appropriate to do a bone scan rather than a CT? Perhaps this is a question which you can ask your doctor tomorrow. I hope that your appointment goes well and that you are able to get all of your questions answered so that you can make the most informed decision. Please take care dear Amanda and keep this forum updated as you are able.
With special caring thoughts and continued Hope,
Bonni

[Amanda]

Hello Everyone,
I wanted to up date you on the radiation i will be receving and then i will post any side effects as the weeks go on.
I will be receving intensity modulated radiation therapy (IMRT) for about 6 to 7 weeks to my right calf. They will be trying to prevent any more nerve damage and any bone damage that can take place with radiation.

To up date about the guided CT biopsy. I have told them i will not do this untill we see the CT of the chest in the begining of May.
I highly love and respect Bonni and when she said that it may have a chance of spread it confurmed a fear i also had.

I will also update on what the CT shows in May and let you know what treatments if any or surgery they are thinking of doing.

All the best to everyone and there families <3
Love and prayers to all the ASPS paitents!

Amanda R

[Bonni Hess]

Dear Amanda,
Thank you for your faithful updates. When are you scheduled to begin your radiation treatment? Please know that my most special thoughts will be with you as you undergo your treatment, along with my best wishes and special prayers for a very successful outcome to the treatment with very minimal side effects. I will also be holding very tight to Hope for only good news results from your May CT chest scan, and will be anxiously awaiting your updates on your radiation treatment and the chest CT results. Take care dear Amanda,
stay strong, and know that you are not alone in your battle as we on this Board are all here to help each other with vitally important shared information and strengthening support, encouragement, and friendship.
With hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni