My husband had a scan today and result are devastating his lungs fibrosis has progressed, and showing a shadow on his left lung
And told there is nothing can be done, stem cell is not working which he had done 4 months ago,
so please do not waste your money this is an advise to all
has anyone had stem cell and gone through this ?
Hi
Sorry things haven’t worked out as you where hoping for. But pleased you had the courage to repost, as a reminder to others that it’s not all that seems.
thank you there is no cure, we had to try and hoped for best
Asfaan,we are all disappointed that the stem cell treatment does not appear to have helped your dear husband,but at least you have had the courage to explore that avenue of treatment and we wish you both courage and strength for the future,best wishes skis and scruffs x
thank you both
How disappointing for you both. Thank you so much for feeding this back for others to learn from. There are some charlatans out there.
Bless you and your dear husband. Thinking of you both. Xxxx
Thank you so much
Sorry it didn't work out for your husband. Thank you for letting us know as it will be food for thought for others thinking of going down the stem cell route. All best wishes x
it did not work for him due to infection that killed cells, but then who knows what really happen, its only being 4 months but condition deteriorated, that showed cell are not working
Hello asfaan_abs I am sorry to hear your husband did not respond well to stem cell therapy. You asked has anyone else had stem cells? and yes I have back in 2014 I had 2 stem cell transplants and 8 platelet rich plasma inhalation treatments for COPD Emphysema. which in my case were very successful. I had another round of stem cells in December of 2017.
Stem cells are not a magic wand that will cure all and sundry I'm afraid, your stem cell Doctor should have informed you that S C T does not work for everyone. Most people get a good outcome but there are those who just do not get a good result. That is a reality I am sorry to say that has to be accepted.
I do not believe that stem cell therapy is so out there and new age! they have been around for many years. Stem cells are not difficult to extract from the body and then re-introduce back into the same body. There are some good clinics around but there are a lot who just charge outrageous costs for what in my opinion is rather a simple procedure and not time consuming (day clinic) is all. So yes there is a place for stem cells but one must understand what can and cannot be achieved and also accept that sometimes the stem cell treatments may not work. Before having a stem cell procedure I advise to strongly do your research, in both the procedure and the cost, the procedures will be the same but cost will vary considerably. Stem Cells also take about six months to really start to see results. There are different types of stem cells, you did not mention which stem cells your husband had.
I do wish you all the very best and I'm sorry that things did not pan out as you expected.
Thank you for your reply, i had all the faith in stem cell, the treatment carried out in Bangkok in November of last year he had 3 MSCs iv of 20 million each time and 3 MSCs inhalation 3 pulmonary growth factor and 4 times chaperone protein this was done in 18 days period
He was feeling good for the 1st months and was improving, from 15% gas exchange to 32 % then had infection since then started to need more oxygen hand turning blue scan result showed fibroid progress more and will require more oxygen now on 4 ltr before was 2 ltr its been 4 months now i am still hoping. Stem cell Dr in Bangkok had said if there is a infection in the body it will kill cell. have you experience of any infection during the 6 months of cell transplant ? have you been told if infection in your body it will stop cell generation and will kill cells
where did you have your transplant done? and one more sensitive question how much did you pay
I wait for your reply OR you can message me privately
Hi asfaan_abs
Thanks for your reply. To answer your questions my treatment took over a month, I had the first IV cells at the beginning of the October this was followed by 8 inhalations during the month and then the second round of cells at the end of the month. Also within that month the hospital had me doing yoga breathing excercises and acupuncture ( I found the Acupuncture a bit painful as it was on the hand) Before the Stem Cell procedures the Hospital also has the patient go through what is called Panchakarma (In Indian Ayurvedic Medicine a five fold (Panch, being five in Hindi) detoxification treatment involving massage herbal therapy and oil baths. That might have given you a clue as to where I had my stem cell transplant done. It was at the Stem RX Bio Science unit at the Dr Mahajan Hospital in Navi Mumbai India. The total cost was U S $15,000. I had a small booster just last year that cost way less. I also have regular inhalations of Platelet Rich Plasma which is another wonderful technique using your own prp it attracts cells to migrate, in my case to the lungs and it does promote tissue growth. It is quite a new procedure but one I feel compliments the lung cells. About infections. No I did not have any. I spent the first month after the treatment in Mumbai in the countryside in a yoga Ashram (healing centre) and wore a mask when I went outside. After that I traveled back to South India where I still live. I am Australian. Hope this answers your questions, and thank you again for getting back to me and I do wish you all the best.
Hello Nils68
Thank you for your response your treatment sound interesting, we did first though of going to India we did lots of research even the Stem RX as our routes are from India.
The best response we received was from Bangkok, and treatment they suggested that suited my husband reason that he suffers from IPF and no one guarantees that he will be cure at 100% but they said he will get better at least 60% still no sing of cure they did say to eat healthy and exercise, but being cold and snowy here in UK he just did not come out of his bed that was downsize, and then suffered from infection, we wanted to travel to India but Dr are now saying no, lack of oxygen on Board no airline will carry him
Sorry one more question what type of cell they used?
Good Luck with your treatment i hope thing goes well with you please update me as you go along
Hi! asfaan_abs The cells I received were firstly from the bone marrow in my hip joint and the second site was from the lower back region, these are the usual sites for stem cells to be harvested for my condition COPD. What a pity your husband didn't attempt to exercise one of the reasons I went to the ashram in Nasik was the program offered, this was through Stem RX as well and it was quite intensive, wake up at 5am no tea or anything and start yoga at 6 till 8 then 8.30 breakfast, strictly veg then rest till 9.30 then there would be programs styled for each person depending on the condition, we were asked not to leave the ashram for the first week but after that each Sunday was free and evenings we could go for walks outside. there was no TV but there was internet and phone. I enjoyed my month there and although it was intense when I left the ashram and went back to Mumbai for a few days before coming back to Kerala I was feeling much better. Before stem cells I was on oxygen and in a wheel chair. Today I am free of those two things. To achieve a level of wellness that you are happy with I do believe you must push yourself into it. I still push myself even now. I know where I was and it took a lot to get where I am today, so I do not want to go backwards. One thing though exercise is the key, no matter which exercise it is, for how long you do it each time, keep doing it, you will never go backwards it is the key to health. Wishing you all the best. By the way you can travel with your own portable oxy-concentrator, I have a Phillips one, brown leather which just looks like a shoulder bag, all airlines will allow you to take it on board and use it inflight. I do a number of long flights between India and Australia and to Hong Kong. I do not use oxygen normally or in the home, but flying is another thing, I carry my oxy meter and if I drop below 90 then I just hook up with the oxygen for a while. Check out with your Doctor about it Mine is called, Phillips Respironics simply go. works on batteries and it makes it's own oxygen, price in India is Rs 1, 81000/-.
Anyway take care.
Thank you for coming back very soon Yes we did travel to Bangkok that was 13 hours direct flight in November for treatment, we took portable oxygen on continuous flow on level 2 but Dr are now saying he is not fit to fly as he require 8 ltr on contentious flow on flight, so no air line will risk a passenger travelling with high flow, he is on last stage with his IPF progressed so much in advance and on oxygen 24/7
thanks for your advice i just hope stem cell kick in ASAP
Thanks for getting back soon too, sorry to hear that your husband is on a high level of oxygen and unable to fly. I hope too that his stem cells start activating soon, but please try and stay positive, and of course taking care of yourself as well, you certainly have enough to contend with. So please take care and I know we all of us here will be thinking of you.
Nils
thank you for your support all the best
You know, it is worth a try and you can at least say this despite your disappointment. Carry on hoping and take advantage of any possible help or opportunity.
Dan
Thank you Dan you have to try whats available for your loved one and hope for the best its shame it did not worked, may be early days yet
From billbruce
So sorry to hear that the Stem cell treatment didn’t work.
I had heard that it worked for some but was not a complete cure
God bless you and your husband
Thank you billbruce
I had stem cell treatment done a little over two years ago. I live in the United States and had it done at The Lung Institute here in the states.
I have Bronchiectasis (not fibrosis) with asthma, which can be caused as a result of childhood illnesses. The difference between COPD and Bx is that with Bx, the walls of the airways become weak adding to the damage to the lungs. I didn't start having breathing issues until 30 yrs ago (I'm 68 yrs now) People with Bx have more and more infections because it's difficult to cough the mucus up.
I did not notice an improvement in my health until about 9-12 months after the treatment. I can now go about my daily tasks without a lot of shortness of breath. I have been able to decrease my daily meds. We have been on trips which included a lot of walking, I was able to keep up.
Since having the treatment, I haven't had pneumonia, ER visits, hospital stays or bronchoscopies. Before the treatment, I was having 4-5 bronchoscopies a year. And according to my specialist, my numbers keep improving.
The treatment was to help with the repairing of the damaged lungs, the extra cells were to go to the damage areas and repair the some of the damage (it doesn't help with the weakening of the airways).
Since this is still considered research, the treatment was out of pocket ($10,000). So my husband and I had to really think long and hard before deciding. I felt, that even if it didn't work, I would be contributing to the research, succeed or fail.
Beth
Thank you Beth very informative
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