Harrowing week and some guidance

pibikay · 03-17-2013, 08:56 AM

After her 4th Navelbin on 7th March Hema's blood count fell drastically to 400 and she could not do anything and had to be hospitalized . She had a course of IV and some antibiotics.She is back to a stable blood count. But her experience during the period of low blood count has made her afraid to stand or walk and I am having a tough time making her stand and walk about a bit.
NOW REGARDING THE GUIDANCE PART HEMA"S ONC SAID THAT HE WILL LIKE TO PUT HEMA ON PRAJETA AND AS HE IS REGISTERED IN THE US ALSO HE CAN GIVE PRESCRIPTION FOR PRAJETA.MY CHILDREN IN THE US CAN I THINK PAY.BUT MY QUESTION IS THAT EVEN IF IT CAN BE SORCED AND SOME ONE TO BRING IT FOUND HOW TO TRANSPORT IT.PRAJETA BEING AN ACTIVE AGENT
Guidance please for transporting and sourcing
thinking of all of you and praying too

ElaineM · 03-17-2013, 05:58 PM

I don't know anything about the drug information you requested, but I think it might be a good idea to ask Hema's doctor to refer her to a dietician or nutritionist. Foods that benefit the immune system will help the white blood count and foods with iron and b12 will benefit the red blood count. Are there naturopathic physicans in your country. A naturopath might be able to help keep Hema's blood counts higher. Hema's doctor might also want to consider an I. V. iron treatment.
Even though we don't have a lot of energy when our blood counts are low we should try to take short walks or do some exercises in bed. Whatever we can do will help.
Good luck. All the best to you both.Take good care of yourselves.

CoolBreeze · 03-17-2013, 06:15 PM

Did she try neulasta/neupogen or leukine to keep her white count up? Navelbine always dropped mine pretty low too so I always had to do the colony stimulators after my infusion. Maybe that will work.

As for how to transport perjeta, I have no idea. I would call Genentech and ask that question.

NEDenise · 03-17-2013, 10:24 PM

PBK,
Sorry...no wisdom about Perjeta to share...
But sending thoughts and prayers for the return of Hema's strength.
Denise

Lani · 03-17-2013, 11:26 PM

Try to have her exercise in a warm pool, if you have access to one--first shoulder deep, then less deep. Can your doctor prescribe physical therapy to
determine why she feels like she will fall ie, does she have neuropathy so that she doesn't feel her legs well, particular muscle weaknesses or just tiredness from insufficient red blood cells(the latter should not be the case since you say her counts are all now good)?

Perjeta, being a monoclonal antibody, needs to stay between 2 and 8 degrees Centigrade--too high or too low and it loses its effectiveness. Google "cold-chain transport" and you will see it is not simple to maintain this temperature range (the same range used for transporting vaccines) and there are also customs rules about what can/cannot be transported across borders.

I would see if your doctor or Genentech can get you in touch with the companies they use to transport drugs internationally for clinical trials and see if they can give you any useful information I once met someone from one of these companies that made it sound as if they could even do it for an individual
ie, sending US made and prescribed drugs abroad. They will know the rules, paperwork involved, customs clearances involved, etc. Remember these are extremely expensive drugs so it is important to deal with people with the utmost scruples or you may found your children's money gone and no drug for Hema. Perhaps there is a Genentech person who visits family in India periodically who could help out--again I am just thinking outloud as I don't know anything about the law in Indian regarding import of drugs, how honest customs personnel are, etc

You might want to email Richard R. Love an oncologist at Ohio State University (previously @ University of Wisconsin) who specializes in running breast cancer clinical trials in China and India. I met him once and he is a very kind man. Google or PubMed some of his articles, look for an email address and just write him out of the blue. You never know, he may answer!

I have no expertise or even real knowledge of how these things are done but tried to research it once to help someone. I recently learned about the "cold-chain transport" business and it is very complex.

Best of luck!

KDR · 03-18-2013, 03:54 PM

Pibikay
You've been given some excellent advice here, and I'd like to add yoga and meditation to the mix, so Hema can open and close her practice with one hour of peace of mind and clarity. Naturally, she will begin to want to strengthen wholly, even if she starts bone by bone. Wishing you both well,
Karen

Mandamoo · 03-18-2013, 05:55 PM

I had lots of issues with white cells on Navelbine - I had a dose reduction and was able to maintain my neutrophils between 1.5 and 1.8 without neulasta. I also used accupuncture.

Re: Perjeta - I am accessing it through Roche (genentech) via an international compassionate access scheme - it may be worth applying - that way you know the drug will be transported properly and you won't have to pay. I am not sure it is still running now that there is both US and European approval. I am unsure of the impact on my disease yet as we have yet to scan and my tumor markers still seem to me climbing a little but have never been reliable for me. It does cause diarrhoea for me though which I am now managing but was difficult at first.

I am not sure why Hema feels unable to walk - maybe she felt very faint while her counts were low. If she can start mobilising again I am sure it would help her enormously.
Much Love

pibikay · 03-21-2013, 08:06 AM

Hi All.I tried to make a post 60hrs back and the site went off.It is accessible only now.
I have a lot to say
Firstly Hema had doses of Neukien then another stronger wbc booster lots of NS and antibiotics for some infection.
The physio after testing her legs and putting her through some exercise said that her legs were strong and the fact was that she was scared.
She is having nourishing food but she is not able to get in adequate quantity.
Now for some good news,
She had a check up today,The Onc physically examined her and pronounced that most of the lumps in the breast have dissolved and that he is continuing eith the Herceotin Navelbin Tykerb course,
and has also prescribed Newfill inj three days for two weeks.She had her 4th Herceptin (2nd Cycle) and 6 th Navelbin today.I am keeping my fingers crossed that there will be no dioreeah.Best of luck to all of you

Rolepaul · 03-21-2013, 01:30 PM

Sounds like the Neupogen did not work correctly. Find out if the lot gave a problem for others. We have an office in Hyderbad and contacts with Genentech/Roche. If you need to get it there, I might be able to get something done through my pharmaceutical contacts. We routinely move products from the US to India in 2-8C temperatures without issue.
Rolepaul

pibikay · 03-22-2013, 12:26 AM

Thanks Rolepaul.The Onc ha switched to Newfill instead of of Neukin (though it is costlier) and hope it works.If I need your help I will contact you
BTW while investigating about importing Perjeta my daughter in law who is in Chicago (she has some contacts in the pharmaceutical line) rang up and said she was confused with so many different prices being quoted !!!!