Jordanne on Cediranib Phase 2 clinical trial at NCI

[DottyW]

Hello,
It's been an interesting, if you can call it that, month. October 14th was Jordanne's 1 year anniversary from her surgery to remove the primary tumor I thigh. She was feeling a little too confident in all of the progress she has made and managed to actually put her full weight on her bad leg and ended up breaking two bones in her foot. This led to an Xray which revealed that she has osteopenia in her leg and foot. The osteopenia is most likely from the lack of use because of her nerve damage and dropped foot. She was fitted with a boot and went on about her business.
On Halloween weekend she went out with friends. She was sitting on a bar stool with the boot on the rung of the stool. Someone knocked into her knocking her and stool over. In the process her boot was caught in the stool and she broke her tibia . She recognized it as broken immediately so did not try to stand which was good. After being in a small cast for a few days, the orthopedic doc put her in a thigh high leg cast to stabilize her leg. On further consultation with her orthopedic oncologist in DC, he recommended that she not stay in a cast and rather have surgery to install a rod in the bone, or something similar because keeping the foot imobile for 3 months would make the osteopenia worse. NIH doctors took her off cediranib until after she has surgery on Monday and the bone starts to heal. We do not believe that the breaks were tumor related, but the surgeon will go ahead and scrape the inside of the bone to make sure. I expect she will be off of the cediranib at least a month, so she will miss her restaging which was scheduled for the 22nd.

We hope and pray that the surgery will be successful and Jordanne will bounce back, as she always does with a positive spirit and lots of gumtion. She is excited to get the huge cast off but, we are always anxious about surgery. Hopefully, this is the first and only surgery for this year. After 4 last year, we could certainly use a break, no pun intended. But, as you all know, this disease doesn't seem to give you a break for too long.
May the end of 2010 lead us to better treatment for this disease and a cure soon!
Dotty

[Ivan]

It makes me sad how trivial stuff like this can still have such a negative, and profound, effect on us ASPS patients. Personally, I've been injured (my knee and shoulder) for 9 months and could barely do any sports. However, I am now almost over that. Nothing 1 hour of specific exercises a day couldn't fix

I hope J stays the course and fixes this annoying injury for good.

[Bonni Hess]

Dear Dotty,
My very special thoughts have been so very much with Jordanne and your family today as she underwent her surgery to repair her broken tibia. I Hope that the surgery went well, was very successful, and that Jordanne is now resting and recovering with her post op pain under control. Please give her a gentle hug from all of us Hesses and know that we are holding her and your family very close in our hearts and most caring thoughts.
With deepest caring, healing wishes for Jordanne, and continued Hope,
Bonni

[DottyW]

Thanks Bonni and Ivan,
Dr. Snow successfully inserted a rod into her tibia. Power went out at the hospital, but we didn't notice. Generators came on smoothly. She also experienced the earthquake Tuesday while lying in the hospital. Home from the hospital Tuesday afternoon and is doing pretty well with the pain control.

I expect she will be off of the Cediranib for at least 2 more weeks. We will wait and see what they say.
Thanks,
Dotty

[DottyW]

Yeah! Got the report back from Jordanne's surgery and there is no evidence in cancer in the tibia. That takes a weight off. Now on to the healing!

[Amanda]

YAY!!!! I am so happy reading this news!
Happy holidays!!!

[DottyW]

Jordanne had her latest scans on Monday and Tuesday last week. We have not heard the results of the PT scan, but the CT scan showed a slight growth in her lung tumors. The one that they were measuring was down to .9cm from earlier 1.3 cm. It is now back up to 1.1 cm after Jordanne was off the Cediranib for 5 weeks while she had surgery on her broken tibia. She was cleared to start back on the Cediranib on Thursday and so far is mostly just very tired. She enjoyed the break for a month and made use of being able to eat as much as dairy as she could, especially eggnog during this time of year.Dr. Speranza said that her smaller tumors (44 in all) which they are not measuring due to their small size all appeared to be more visible on this latest scan.
As always, we are hopeful that the Cediranib will continue to do the job of shrinking the tumors and keeping the disease at bay while a cure is being sought. Jordanne's biggest frustration currently is being back on crutches as it looks like it may take quite a while for this bone to heal. Her orthopedic surgeon says that a boot top break is notoriously slow to heal due to alesser amount of blood flow to the area. I guess I'm concerned that the Cediranib will make that healing even slower. But there remains the greatest healer, God. I guess I'll trust that one the most.
While in the clinic, we met a young lady from Brazil named Ana who is also on the trial. She was diagnosed with ASPS in 2004 and had gotten to the end of treatment options in Brazil so came to San Francisco to stay with her sister and look for other options. A Dr. at Stanford told her about this trial and she is very happy that they did as she has had over 30% shrinkage so far. I encouraged her to check out this forum and share her story.
Have a blessed Christmas!
Dotty

[DottyW]

Jordanne just finished her latest round of scans. The initial verdict is no change. Stable disease. We won't get the results of the leg scans til later but everything seems to be going OK. She will see her Orthopedic surgeon on the 17th to see how the bones in her leg are healing. Jordanne is praying that we will hear that she can get rid of the crutches. We can always hope.
She has been feeling quite well lately with more energy despite bouts of insomnia. She has not experienced the mouth sensitivity this go around and blood pressure is staying in the top of the normal range.
We met another ASPS patient, Christine? from the Bay area. She said that she has visited this forum but has not posted as yet.

Best wishes for continued health and healing to each of you.
Dotty

[Bonni Hess]

Dear Dotty,
Thank you for so promptly sharing this WONDERFUL!! and VERY ENCOURAGING!! news !! I am so very happy for Jordanne and your family, and willl be holding very tight to Hope that the results of her leg scans also confirm continued stable disease. I also share the Hope that Jordanne's upcoming orthopedic appointment later in the month brings more good news of good healing of her fractured tibia which will allow her to have freedom from her crutches. Regarding Jordanne's insomnia, Brittany has also suffered frequent insomnia since starting the Cediranib, so it is probably a side effect of the medication. Hopefully other Cediranib patients will write to share if they have also experienced this problem while on the Cediranib.
I am Hoping that both of the ASPS Cediranib patients who you have now met at NIH, Ana from Brazil and Christine? from the San Francisco area, will visit our Forum and decide to actively participate on the Board (even if they want to do it anonymously for whatever reason) because we all know how vitally important and invaluable the shared information and support is. Without this Board and English patients Paul Mavers' and Clare Clarke's thoughtful sharing of information, we would not have known about Cediranib and its very promising results for about two critical years when it finally went into Clinical Trial at NIH, which would have tragically probably been too late by then for Brittany to benefit from it because of her very aggressive cancer progression at that time.
I know that it is extremely snowy and cold on the East Coast right now with the new major storm that was forecast for today, so I Hope that your flight is able to successfully and safely make it out from DC, and that you will have a very good and safe return trip Home to the West Coast. Please take care dear Dotty, give Jordanne and yourself warm hugs and High Fives from me, travel safe and with strengthened Hope in your hearts, and keep in touch with the Board as you are able.
Sharing the great joy of your very good news with much happiness, special caring thoughts, and continued Hope,
Bonni

[DottyW]

Sorry that it has taken awhile to post Jordanne's latest report.
Jordanne's leg has healed enough for her to travel by herself on this trip so she went to Florida a week before to enjoy some time with family and get some Vitamin D which has been nonexistant in the Pacific Northwest so far this Spring! The orthopedic surgeon says that the bones are healing better than expected so she does not need to go back. This was a concern for him because they weren't sure how the Cediranib would affect the bone growth and healing. So far so good.
Her Scans were on March 29th. No growth and no shrinkage. However, 2 small tumors in the lower lobes of her lungs looked fuzzy according to Dr. Speranza. They can't tell whether that means they are growing or possibly it is a result of her recent bout with the flu bug going around, it looked a little like pneumonia. I prefer to believe that they are starving to death and putting up one last gasp. They will know more at her scans at the end of May. Her bloodwork has been very good and very few side affects.
She will go over the results with her oncologist tomorrow.
This week, she has had another bout of tendinitis in her right arm. She had this 6 months ago or so. It was one week in her arm, then one week in her calf and finally one week in her rib area. It has been very painful especially not being able to take ibuprofin. She finally got clearance from NIH to take ibuprofin a few times. Has anyone else experienced this?

[Ivan]

I have extensive experience with tendinitis, including elbow. Before anything else here's what will help FOR SURE - that's icing it, especially after activity.

You should get her talk to me on instant messenger and I'll tell her everything I know about it.

[Bonni Hess]

Dear Dotty,
I am so very happy that Jordanne's March 29th re-staging scans show no new tumors and no growth of her lung mets. Hopefully the "fuzzy" appearance of two of her lung mets is related to some possible residual pneumonia from her bout with the respiratory flu, or more happily, necrosis of the mets! Brittany also had a recent bout with the same flu and unfortunately had to be hospitalized overnight for IV rehydration and anti-nausea and pain meds for her flu related severe vomiting and headache. Thankfully, she didn't develop a pneumonia despite having a deep chest cough and fever. I am so grateful that Jordanne's leg is healing so well, and that she was able to escape to the warm Florida sunshine for a break from this continuing miserably cold and rainy western Washington Spring?...... weather! Regarding your question about Jordanne's painful arm, calf, and rib tendonitis, Brittany experiences debilitating joint pain and weakness, but I don't know if this is the same thing that Jordanne is having or not. Brittany has recently developed a couple of strange painful burn type blisters on her arm and back which seemed to just suddenly appear and then have taken a long time to heal. We had her radiation oncologist's assistant look at them last week, and she felt that they might be some type of a boil with staph infection, but it is nothing that Brittany ever experienced before so we are assuming that they are somehow Cediranib caused or related, and we certainly feel that the slow healing is a result of the effects of the Cediranib. Has Jordanne experienced anything like this? There are so many unknowns with this medication, which is of course why it is in Clinical Trial, but we continue to be deeply grateful for the disease stability and tumor shrinkage which it has provided for Brittany, Jordanne, and others. Please give Jordanne a special hug from us and tell her that our very best wishes are with her for the continued healing of her leg and continued disease stability. We will be holding very tight to Hope for good news from her next scans in May, and anxiously awaiting your next update. Take care Dotty and enjoy today's sunshine and the brief reprieve from the rain.
With special caring thoughts, healing wishes for Jordanne, and continued Hope,
Bonni

[JordanneG]

As I'm sure many of you can tell I do not check this site or update regularly (this does not mean I am not interested in everyone's stories or progress...it just means I'm very busy and I always get updates from my mom. So please know I do follow each of you as closely as my schedule will allow). I'm glad my mom is able to update my story for everyone, but I thought it might be nice to throw a little personal part in here as well. I saw my oncologist yesterday (who I must admit is my favorite of all my Dr.s. He is just a great listener and actually agrees with me on any decisions that we need to make) and he diagnosed my arm as tendinitis and also tendinitis in my right hip. This is good news as we were worried that my hip pain might be in the bone. Hey look at that, I am finally catching a break

Unfortunately it is incredibly painful though so Ivan I would l like to talk with you about all you know for it. Unfortunately the only instant messenger services I use are facebook or skype. Do you have either of those? I would love any feedback on it.

Bonnie, I am sorry to hear about the blisters Brit is having I have not experienced any skin problems from the trial but my Dr.s there are always asking me and checking so I do think they are common side effects with the pill. I love that Brittany and I are facebook friends, it really helps me keep up with her She reminds me so much of myself and when she continually stays upbeat and out having fun it reminds me to do so myself

I am back to the east coast again in a few weeks so will have more to update then, as of now I am just trying to enjoy my days with friends, work, my family and my dog...who knows, maybe sometime I'll throw a boy into the mix and start dating again Hope everyone is doing well and feeling better as each day comes!

[LCMA]

Jordanne, I am also on Facebook if you want to be friends! I have my full name on there- LCMA-Ann Gena, if you want to search & add me

[Bonni Hess]

Hi Jordanne
It was a special joy to hear from you. I am so glad that you and Brittany have connected on Facebook, and it would be wonderful if you, Brittany, LCMA, and others could all communicate on FB with each other as it is so good for you young people to have your own forum where you can discuss and share "normal" things about your young adult Lives that are totally unrelated to ASPS. I am glad that you like your primary oncologist so well which is so very important. I am so sorry that you are experiencing so much pain from tendonitis in your arm and hip, but am grateful that the doctor diagnosed the less benign tendonitis instead of ASPS bone mets. I asked Brittany about the tendonitis, and she said that in addition to the joint pain she also has very painful tendonitis in her knees and ankles. As a gymnast, soccer player, and cheerleader she had developed tendonitis in her knees during middle school and high school, but the tendonitis in her ankles is something new since she began taking Cediranib so it obviously unfortunately another negative side effect of the medication.
Keep enjoying Life with your friends, work, your family, your dog, and possibly a new boy friend when you decide to start dating again . Stay warm and dry in this miserable cold and rainy/hailing Pacific Northwest Spring?....... weather, and know that our very best wishes are with you for continued healing and good news results from your next scans at NIH.
With warm hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni