[Rachael]

Thanks Mary for your kind response. I do consider myself lucky and am hoping that it continues to improve. I have an eleven year old son whom I adore and this improvement has given me the hope that I needed to live my life to its fullest potential.

Jim, Mike, and Zoe.
I hope you’re all doing well and that your treatments are still working.

Rachael

[Rachael]

Kenneth in Virginia

I really hope your counts start to improve again. The specialist said the other day that he wished he knew how Revlimid improved our Hb and cytogenics. Even with all the advancements in MDS treatments the simple questions like how long do these drugs improve our lives for seem to be the hardest to answer.

Best wishes
Rachael

[Rachael]

Hi all,

Just wanted to check in and say hi. I had my specialist appointment and received great news that the Revlimid has really started to improve my Hb. It was 90 when I first started, and it is now an amazing 124. The specialist was impressed by this increase. On the first cycle the platelets dropped to 91, but this cycle they increased to 106. I’ve had no change to my white cell (2.6) and neutrophil count (0.7). They are relatively low and I still need to watch out for infections. It’s good to feel well again. I start my third cycle of Revlimid on Saturday.

I hope you’re all well.

Best wishes
Rachael

[Rachael]

Bob,

I’ve been following your thread for awhile now and have been really impressed by the way you’ve managed your MDS journey. There are many of us that don’t write on a regular basis, but those who do their words inspire us with hope. Keep up the good fight Bob.

Rachael

[Rachael]

Thank you simplistic007 for your kind words and support.

[Rachael]

Hi Gene,Jim & Zoe

My bone marrow results are in and they have changed slightly. The chromosome test takes time and so those results were not ready. My blasts cells have increased from 2% to 6%, but the specialist wasn’t too concerned as he is pretty positive that Revlimid will bring the blasts cells down. The dizziness and nausea I’ve been experiencing are still a mystery to the specialists as they’re not typical MDS symptoms. I’ve been taking nausea tablets and they’ve been alleviating the problem. On the 4th of September I will commence with Revlimid, in addition I’ve been told to take aspirin to reduce the risk of thrombosis. I’m a little nervous as the side effects look daunting. Do the side effects start straight away or do they occur over time? Currently my Hb stay stable with blood transfusions ( 90 -100), but my neutrophil cell count is around 0.85, my platelets are Ok but seem to be decreasing.

The Specialist said I will probably have another BMB in six months to review my blast cells and chromosomes. I’ve got some praying and positive thinking to do. I’m hoping I’m one of the lucky ones who don’t experience too many side effects.

It’s great to hear that Revlimid has worked for you both. I really look forward to being transfusion independent.

Best wishes to you all.
Rachael

[Rachael]

I received some great news today in the post. My medical insurance has approved (from their special purpose fund) Lenalidomide (Revlimid). I cried when I read the letter (I know that sounds pathetic). The guilt of having to put that financial burden on my family was too much for me. Now I can move on and put all my energy on making sure that Revlimid works for me. I see the specialist next week and am having a BMB the week after. Then I have to meet with the drug company.

Rachael

[Rachael]

I’m so sorry Esther. All my prayers are with you and your family.

If you ever need a friend I’m here for you.

Rachael

[Rachael]

Esther

My heart went out to you when I read your thread. I have no knowledge of what happened to your daughter in regards to how she was treated on this forum, but I know what it is like to go through this type of trauma. My young brother just passed away two months ago from bowel cancer and it was a heart wrenching time for my family. Like you my mother had to watch her child battle with an awful disease.

It may be difficult but don’t let past words or comments fill your mind because the emotional stress you are experiencing is enough for anyone to cope with.

Please send my words of support to your daughter. I hope she can fight the good fight and survive her transplant.

My thoughts and prayers are with you and your daughter at this time.

Keep strong Esther

Rachael (South Australia)

[Rachael]

Hi Jim

I agree with your comments above. As MDS becomes more of an issue I think our governments will have to "think outside the box" and look at these generic versions. I’m so glad that you can still bring it into America and be able to live a decent quality of life. I’m OK at the moment and am coping with the fatigue. I haven’t given up and am still hoping that the insurance company will pay for it. In the end Revlimid may not even work for me and so I face the challenge of uncertainity (as we all do). I think the sad part of having MDS is knowing that other MDS patients unfortunately lose their lives to this dreadful disorder because of a lack of funds, no trials or beacuse of age. In Australia, BMT’s are not given to those over 65(unsure of exact age).

I’m on a couple of forums and it really makes me happy when I hear others are in remission or have successfully got through their BMT’s. It gives me hope.

Rachael

[Rachael]

Hi Jim
I received a response from my specialist today he commented that it’s definitely a lot cheaper, but stated there is no way to tell how pure these copies are. He is also confirmed that it is illegal to bring them into Australia because they need to be approved by the TGA. Revlimid is registered and approved here by the TGA. Revlimid has been approved by the PBS(Pharmaceutical Benefits Scheme)for Myeloma patients.

TGA stands for the Therapeutic Goods Administration and is a “Commonwealth Government agency that regulates medical devices and drugs. Prescription medicines and over-the-counter medicines which meet Australian standards of quality, safety and efficacy are included on the Australian Register of Therapeutic Goods. Medicines may be registered or listed. Registered products are thoroughly evaluated and are labelled with an AUST R number…” TGA website

So it seems this generic version would need to pass two government approval bodies (TGA and the PBS) before it would be used in Australia.

Not that this above information helps me much. I’m still waiting for approval from the insurance company.

Kindest regards
Rachael

[Rachael]

Hi Jim

Thank you very much for the above information. I emailed this information to the specialist today.

Rachael

[Rachael]

Hi Josi

Have you ever looked Chronic Fatigue Syndrome as a cause for your fatigue? I read a book about an Australian prominent media personality who had it. The multiple bouts of illness may have caused it. This man had it for years until he totally changed his diet (organic I think)and slowly increased exercising. The name of the book was called “I’m not crazy, I’m just a little unwell” by Leigh Hatcher.

I hope the above information may give you a lead.

Best of luck
Rachael

[Rachael]

Hi Jim

I checked Canada Drugs. Revlimid was costed at $9000.00 for thirty tablets. This is the equivalent cost to what we have to pay in Australia. I couldn’t find the other option you discussed (90 tablets for $780.00). I would appreciate it if you could kindly post the brand name of the drug you were getting from India. I will definitely ask my specialist about this cheaper option. I suppose I have to ask one key question; If this version is safe, works and is cheaper why isn’t being used as the primary drug of choice and not Revlimid (Celgene’s product)? Maybe it’s illegal to import or use in Australia.

It’s great to hear that the drug your on has made you transfusion independent.

I hope you are well.

Best wishes
Rachael

[Rachael]

Hi Jim / Kenneth

It’s been awhile since I posted. Two weeks ago my Hb dropped enough to have my first blood transfusion. The specialist is concerned with all my blood results and now I will be having a bone marrow biopsy to check for cytogenic changes. The plan is to start taking Revlimid within three months. I’m hoping that my private insurance helps with some of the financial costs as it is not approved in Australia for MDS. Being my age, the specialist is concerned about an iron overload issue, that’s why I think he’s trying to get me onto Revlimid.

I’m generally exhausted all the time now. I can’t exercise like I use too and I get sick from anything that I don’t cook myself. The nausea before the transfusion was driving me nuts.

Anyway, the next three months will go quickly and I hope the specialists strategy to bring my life back to normal will work.

Rachael

[Author]

Posts