Saturday, March 12, 2011

Dear friends,

with Radhika's permission this is Andre writing to you to update you on the events of the last 3 weeks. We both feel bad that this blog hasn't been updated in so long, but Radhika has been in too much pain physically and I have been too busy coping with work and care giving. I don't know what we would be doing without my mother and the support from all of our wonderful colleagues at the University. I am sure that Radhika will be blogging again soon because it is a great emotional outlet for her, but in the mean time I will fill you in on some of the events.

Dr. Forscher has by now reviewed the slides from Scripps as well as Mayo and he agrees with Mayo that this is a high grade Osteosarcoma and was high grade even back in 2006, even though it had low grade elements, and the growth pattern seemed more in line with a low grade tumor. Radhika and I agree with Forscher's assessment, and we believe that Chemo is the right answer at this stage. Radhika will start her chemo treatment on Monday. In my opinion the fact that the tumor was slow growing is a testament to her strong immune system, and I am extremely optimistic that that together with the chemo will help her get better.

Radhika did 2 full weeks at the immune institute, and even though we decided not to pursue it any further, some good things came out of it: they did a chemo sensitivity test on her and the results show that the cocktail Dr. Forscher is proposing has a great chance of being successful. She also learned that she gets relief from using infra-red heat, so she occasionally uses a heat cabin at a day spa across from Tip-top meats in Carlsbad and we bought her an infrared heating lamp. Having a humidifier at home helps her with her breathing, so even though the pain in her right arm has increased to the point where she has a hard time using it at all, the pain in her lungs has gotten a little better and she doesn't cough as much. There is a lot more that went on during those 3 weeks, but I am hoping that Radhika will fill in those details eventually.

Radhika had another scan done 8 days ago and the mass in her lung has grown noticeably, but since Chemo works better on fast growing tumors I am actually quite optimistic. This is partially since Radhika reconnected with another "Mandibular Osteosarcoma" survivor she met when both of them went through all this 5 years ago. Treigh Mulvaney is an amazing person and Chemo worked well for her at that time: it killed her tumor and she did not have the horror experience that Chemo symbolizes for many people. Dr. Forscher was and still is her oncologist and she just saw him for a follow-up. She had only praise for him and the whole team at Cedar Sinai, and so far we feel similar about it. Treigh has gracefully agreed to let me post a link to her blog so that those of you who want to have an idea how Radhika's journey may continue can take a look: http://www.tmulvaney.blogspot.com/

In the mean time here is a quick outline what Radhika's cancer treatment will look like.
There are a total of 4 drugs (and some supporting drugs) she will be getting intravenously: high dose Methotrexate (MTX), Adriamycin (ADR aka Doxorubicin), Cisplatin (CSP) and Ifosfamide (IFOS). Her treatment is scheduled to go for 24 rounds, with each round starting on a Monday, and including the various scheduled and unscheduled breaks can take anywhere from 8 months to a year. The drugs will be given in 8 cycles, where each cycle consists of 2 rounds of MTX followed by a week of 1 or 2 of the other drugs and then 2-3 weeks off.

So 16 of the 24 rounds will be MTX, which will be put into her system over a period of 4 hours on Monday, and then she needs to drink lots of water and take a rescue drug to get the MTX down to a "safe level" in her body. She will be evaluated every 24 hrs and Treigh usually cleared it within 48 hours, but it can also take 72 hours, so that Radhika can expect to be back in San Marcos on Wednesday or Thursday of MTX rounds. MTX is given outpatient, and other than for the 4 hours or so when it is administered and the daily check-ups she does not stay in the hospital. However we need to stay close to Cedars since the high dose MTX can be life threatening and for complications one really wants to be able to go to the 24 hour chemo center at Cedards and not to an untrained ER in San Diego. We are planning to spend our "monitoring" days at a spiritual place we found with Ranjeeta's help: the Vedanta society temple in Hollywood.

The other 3 drugs will be administered over a longer period of time (2-4 days) on which she will essentially get a fanny pack with the drug that slowly, but continuously feeds into her to minimize side effects. After each round of one of these slow drugs she will get 2-3 weeks off so that her blood counts can normalize before the next 2 rounds of MTX. These off weeks as well as the weekends we plan to spend in San Marcos, but in treatment weeks M-W (and sometimes Th+F) we will be near Cedars up in LA. I plan to be with Radhika non-stop except that on some Thursdays I will need to be back to teach, and we hope to find other solutions for her support. This also ensures that Mira only misses both of us on Monday/Tuesday (and maybe Wednesday) night, but otherwise at least I should be there for her. But we will see how things play out and for the first round Ranjeeta has agreed to help us figure something out if Radhika doesn't clear by Wednesday.

So here is a quick look at the plan for the rest of my semester at CSUSM, since after finals things should get a lot easier for me:

3/14 MTX; 3/19 my sister Hannah arrives
3/21 MTX + Spring break at CSUSM; 3/22 my mother returns to Germany
3/28 ADR; 3/31 Chavez day (thank the lord!) and start of Miras Spring break
4/4 off week + Miras Spring break (good timing); 4/7 Hannah returns to Germany
4/11 off week
4/18 MTX (if recovery is good, else off week)
4/25 MTX
5/1 IFOS or CSP (if recovery was good, else second round MTX)
5/9 off week (if recovery was good, else IFOS or CSP) - last week of classes at CSUSM
5/16 off week; Finals at CSUSM, Andre finishes grading asap
5/23 off week or MTX; grades due at CSUSM

after that things get harder to predict because a lot depends on side effects and how well Radhika recovers. Miras last day of school will be 6/16 and then the first day of classes at CSUSM is 8/29 with Mira starting again around the same time. By that time Radhika will be 25 weeks into her treatment and should have finished 4-5 cycles of MTX/MTX/long drug.

I hope this wasn't too much information for you, but I tried to keep it short while still giving all of you a glimpse of what is going on. Again, I am very hopeful, because for some people the cancer already starts shrinking after the first round of MTX, and when her cancer shrinks her pain will go down. When her pain goes down she can get rid of some of these pain killers that make her so drowsy and she can start typing again, which she is really looking forward to.

Best wishes and thanks for the support we continue to receive from all of you,

Andre


Postscript from Radhika: One of the things that bring me joy is reading "Sunset magazine" and "Better home and gardens". If anyone has back issues for these that they'd be willing to lend to me, we would be very appreciative. Just put them in campus mail to Andre and make sure to say who they are from, so that we can return them later.

7 comments:

  1. Andre, thanks so much for the update, I really appreciate hearing what is going on. I think of your family often and wish there was something I could be doing for you. I am glad you have family coming in to help and I know you have wonderful friends able to help in various ways. If there is anything I can do on the university side or any other way please let me know. I'm feeling pretty helpless with regards to how I can help, but if you can think of anything don't hesitate to ask. Sending good thoughts your way, Janet

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  2. Thank you so much, both of you, for this very thorough post. You are getting such excellent support, but know that we are all here for you - just say the word. Your optimism is welcomed and shared by me, Andre. I'm so glad R is getting such good care, and her reconnecting with Treigh is invaluable. With lots of love to you all,
    Marcia

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  3. Andy, Radhi,
    Thanks a million for the update. I deeply appreciate hearing from you, and I know it must be hard to make time for it.
    Let us know any way we can help.
    Love and hugs
    Latha

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  4. Thank you, Andre, for filling us in. I had a million questions that I wanted to ask you the last time I saw you, but I figured that so many others would be asking you the same thing.

    You have a remarkable family. I pray for Radhika's healing, I pray for your strength, and I pray for Mira's good spirit.

    My major conference of the year happens during spring break. After that, I'm a guy who's only teaching MW and has no family responsibilities at night. If you ever need anything at any time, even in the middle of the night, my number should be in your emails.

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  5. thanks for getting us up to date Andre. do let us know if we could help out with Mira during the early week times when you are gone for the treatments. we've been thinking about you 3 so much.

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  6. Andre - thanks for posting on behalf of Radhi. We have been checking every day for updates and keeping you in our thoughts and prayers. Our love to Radhi. We miss you very much and wish we lived closer. Our offer stands. Call us anytime. With hugs - Radhu & Venki

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