[Rackon]

Dawn, you’re likely right.

I’d presume that Thalidomide works very much like its drug cousin, Revlimid, which tends to make you a little worse before it makes you better.

My experience with my dad on Rev. (and the experience of nearly everyone else on this therapy) is that it can send *all* blood cell lines lower, not just HG. It can take several weeks on the drug to see an improvement, if any. A lot depends on the individual. Until then, it can be a rollercoaster ride.

My dad did very well on Aranesp for nearly 4 years until it stopped working for him in February. For those 3 1/2 years he was TX free. He has never been on Exjade.

He has lots of antibodies in his blood so his TXs don’t hold well anyway. When he first started on Rev. all his counts went way down. The doc took him off for a week then restarted him on a lower dose which he has tolerated much better. Perhaps your dad will need his dosage adjusted as well.

Dad’s cell count dives could be rather dramatic and swift. Again, he started holding his TXs better after the dosage reduction and after he’d been on Rev. for a few weeks.

I’m not as familiar with Thalidomide’s profile because Dad’s doc now treats with Revlimid instead. But I’m sure there are other folks here with direct experience with it who will chime in.

[Rackon]

Don’t take no for an answer.

So sorry you have to through this, but don’t accept “no”. The first time you request approval insurance companies often deny SCTs. Don’t give up and talk to the case manager at IU (Indiana University – there is no U of I in the Hoosier state). If you ask, many docs have staff who can help you through the insurance process and get you the extra documentation.

I just had a friend go through this a year or so ago. Keep pushing, get a second opinion, ask for an appeal. My friend finally got approved but it took extra effort and relentless pushing to get it done.

[Rackon]

Please don’t panic.

Many drugs are (or can be) approved that don’t appear on the formularies. Depending on the insurer, deductibles vary. But most anti-cancer drugs are covered, even the so called “orphan” drugs. Many drugs commonly used to treat MDS such as Procrit and Aranesp are covered.

Just be aware of the Medicare Part D “doughnut hole” in prescription coverage – it can be a bit of a shock if you’re on a very expensive therapy like Revlimid. But Part D will still be a great benefit once you’re through the doughnut hole. (You can read about it here on the homepage of this site.) Part D covers (with copays) up to $2600 of prescription drugs, then you are responsible for the next $2600, after which, Part D pays 95% of your prescription drugs.

Should your doctor prescribe a rare or expensive drug for your MDS, the drug companies and specialist pharmacies have people on staff who do nothing but work with the insurance companies to get these drugs paid for. For people with financial needs, many drug companies have assistance programs.

Just as an example, Part D pays for my Dad’s Revlimid, which costs $7000 a month. Dad had no deductible on his AARP plan. We ended op paying nearly $3600 for the first month – ouch – but now we’re through the “doughnut hole” so Part D pays all but $350 per month of his Revlimid.

My suggestion is to wait and see IF you have MDS before you research which drugs are covered. I know this disease can be very scary and confusing but please don’t hesitate to ask your doctor questions. There are many types of MDS and people respond very differently to the disease. Your doc may not start you on anything very dramatic yet. But if he does, it’ll probably be covered in some fashion.

Also feel free to post questions folks here.

[Rackon]

Lydia, my Dad started on 10mg Revlimid a day but couldn’t tolerate it.

He is now on 10mg every other day instead of 5mg daily and doing much better.

Revlimid is only available in 5mg, 10mg and 25 mg capsules to the best of my knowledge.

[Rackon]

My dad did better on Aranesp.

He had Aranesp injections every 3-6 weeks for almost 4 years and remained TX free during that time.

People here actually take both.

[Rackon]

Chuck, the main thing I want to tell you is “don’t panic”, especially if you’re feeling good and have no symptoms.

I can’t emphasize this enough. Some of the MDS info you’re gonna find online is very doom & gloom…just keep in mind a lot of it is also very out of date.

MDS is a term (like the word “colic”, which basically means a tummy ache) that covers a lot of ground and includes more than one bone marrow disease. There are several varieties of MDS. How a person is affected by this disease and its range of treatments is highly individualized. The symptoms and progression depend on several factors, what type of MDS you have, your general health etc. As you read through the threads here just remember that different people have very different progressions and outcomes.

Treatment for MDS encompasses everything from doing nothing at all to drug therapies to transfusions to chemo to stem cell transplants. If one is otherwise healthy and your symptoms are mild, many docs will simply treat the symptoms to keep you comfortable.

MDS is often (though not always) a slow moving cancer. Several forum members have been living with MDS for years and lead productive, happy lives. Some folks remain symptom free for a relatively long time. Others experience a quicker onset of symptoms. Some people experience tiredness from anemia or infections from low white blood cell counts. Other folks may have a more aggressive form of this disease and require chemo or other drug therapies, most of which carry their own risks and side effects. Most folks learn to adjust to their illness and its treatments. In a certain percentage of cases, MDS can progress into AML, a type of leukemia – depending on chromosome results, some types of MDS carry a higher risk for this happening than others.

Again, there’s more than one kind of MDS and it affects different people in different ways. Having MDS does NOT mean you will develop leukemia.

My 86 year old dad, for example, was diagnosed with MDS/CMML in 2002 after experiencing several weeks of tiredness and anemia (hemaglobin in the low 8s). He got by on Aranesp shots every month for almost 4 years and continued to work and travel as he pleased, transfusion free. He now requires a new drug, Revlimid to keep transfusions down. However, according to the WHO, CMML isn’t true MDS but a separate myeloproliferative/myelodysplastic disease. According to another classification, CMML *is* a MDS illness. Go figure.

There isn’t much to tell you specifically about what to expect until you know more yourself – what type of MDS, chromosome results etc. The best thing you can do in the meantime is to eat right nutritionally, keep yourself healthy and continue to live your life – including doing the things that you enjoy. Don’t get too much ahead of yourself until you know what you’re actually dealing with.

You might want to read through the archives – Pattie and others have posted some very useful info on herbal supplements and homeopathic/oriental medicine use in conjunction with conventional medical treatments. There is good info on this site that can be accessed via the home page.

Be glad that your doc has referred you to a hematologist right away. Did he actually tell you he suspects MDS?

Not all hematologists, much less GPs, are up to speed on MDS and the latest drug therapies. If you have any doubts, you may want to get a second opinion from one of the MDS Centers of Excellence throuought the country.

The main thing is Don’t Panic!!

[Rackon]

Frank, I can’t tell you specifically how Dad’s oncology hematologist got the job done – as far as I know, he filled out the normal physician authorization and the nurse practitioner faxed it to Caremark & Celgene to get Dad enrolled in the program. As I mentioned, this doc had been using Thalidomide for some time before Revlimid and feels that Revlimid can be effective for different types of MDS including CMML. He has several patients without the 5q- on Revlimid at this time.

Just like any other drug therapy, the docs take into account lots of different parameters when deciding whether or not to prescribe Revlimid – not all MDS patients are the same and not everyone is a Revlimid candidate. I think it depends on your disease progression, your cell lines affected, other health problems and other factors. My dad has no auto-immune disease and as I said above, his main cell line affcted was Hg – his WBCs and PLTs were usually in the normal range even when he was on 2-4 untis HG a week.

There could be many reasons other than not having the 5q deletion why the doc won’t put you on Revlimid – this drug can be tough on your body.

You can PM me if you want my doc’s phone number for your doc to call him.

[Rackon]

Cathy, thanks for sharing.

Many people on Revlemid have much lower platelet counts than yours. Dad’s dropped from 131 to 71,000 to 31 in about 10 days. You can clot on your own pretty effectively to 71 – our onc told me he doesn’t get real concerned unless you drop below 50. Right now his our going up from 84 to 91. Don’t panic!

Are you transfusion free?

Glad you’re doing so well – hope it continues.

[Rackon]

Hi, Jan. I hope I our story will be of help. I understand how worried you must be feeling – this is such a frustrating and puzzling disease.

The short answer to your question is “yes”.

But it’s been a bumpy road. Here’s the long answer.

Please keep in mind that this is only our experience with Revlimid – people have very individual reactions and tolerances to this drug. Most of the anecdotal reports indicate it takes 4-8 weeks for the drug to do its thing and it doesn’t help everyone. Rvl is not a sure thing.

This has been our road thus far.

My 86 year old dad has been on Revlimid off and on since April. (He’s my best friend too – I’m an only child).

He was diagnosed with CMML in 2002 (some docs say it’s a variety of MDS, some give its own classification). He does not have the 5q- or other genetic anamolies.

He received Aranesp injections (EPO) every 3-6 weeks for over 3 years and remained tranfusion free. His white cells and platelets stayed in the normal ranges. In February, the disease progressed to the point that even increased doses of Aranesp stopped working for him, so we were back to transfusions.

Dad is one of those people who builds anti-bodies even to irradiated blood, so his transfusions started getting closer and closer together, holding less and less well – some weeks we were up to 2 TXs a week (4 units). We were fighting to keep his Hg counts in the upper 8s. He could go from a 9.8 to a 6.0 in only 3-4 days. This obviously was not a good progression.

Our onc-hematologist had previously had success treating with Thalidomide, and was very pleased with several of his patients’ progress on Revlimid. So Dad started on 10 mg Rvl a day the end of March, first of April.

As a frequent visitor to this site, I was prepared for all his blood cell lines to drop, and indeed all cell counts plummetted after 10 days – 2 weeks on the 10 Mg dose. The doc gave my dad about 8 days off and then restarted him on 10 mg every other day, essentially halving the dose. Although the HG didn’t bounce back, the other cell lines did so immediately.

Dad tolerated the lower dose much better and had been on it around 2 weeks, down to 1 TX a week when he fell and broke his hip April 22. He was admitted and taken off Rvl and Coumadin…the orthopedists waited 5 days for the Coumadin levels to come down before his hip was replaced. The hospital gave him 3 units right before surgery because he’d been on coumadin along with the Rvl and the surgeon was concerned about bleeding during the operation.

Dad was then off Rvl for around 12 days and started back on it after he got to rehab.

But a funny thing happened. His HG stayed in the upper 9.8 range for much longer and he went almost 3 weeks post surgery before he needed another transfusion. He hadn’t held that long since in months.

His next 2 TXs were 2 weeks apart – not as dramatic but still much better than the 2x a week he’d had to undergo in February and March

This week, on Monday his CBC showed an 8.6 HG, down from 9.6 last week, so I took him for a cross-type & match on Tuesday, with a TX scheduled today. This was typical for the last several weeks.

But I got a call from the bloodbank yesterday – our doc was cancelling the TX: dad’s HG had gone UP from 8.6 up to 9.6 ON ITS OWN, from Monday morning to Tuesday afternoon.

We’re hoping this is a sign that the Rvl is really starting to kick in and his marrow is recovering. His platelets are up too. (I know all about those awful looking arms.)

It’s way too early to say we’ve turned the corner, but this is still very good news – his counts have maintained for periods but he has *never* had his HG go UP on its own since he was diagnosed.

As for side effects, Dad has had the occassional diarrhea, gas pains and dry, patchy skin that often goes along with Rvl therapy. He also has other health issues to deal with: chronic, renal failure (non-dialysis), the hip recovery, heart arrhythmia, acid reflux and its attendant loss of appetite. But the crisis issue – the CMML – is on the improve, at least this week. For now, he is remaining on Rvl therapy.

I’m guessing you might see some improvement in your mom after she’s been off the Rvl for a week or so. Improvement may not be dramatic, but her cell lines should start to bounce back. Response varies so much from individual to individual. It’s quite common for patients on Rvl to do much worse before they start to do better – that was certainly the case for my dad. I assume your mom is also off Coumadin now too – that should help the bruises.

I suspect my dad was in much worse over-all health than your mom when he started on Rvl, EPOs having failed for him, so we had little to lose by trying Rvl. (The doc had given us the “if things continue in this direction you might want to get your affairs in order” talk. Of course, things have also been complicated by Dad’s broken hip.

I can tell you that the oncology doc tolds us that if Rvl works for you, it’s probably going to do so within 6-8 weeks. Several folks on this forum have reported that their cell lines bottomed out on Rvl, only to see them rebound 4 or 5 or 7 weeks later. Depends on the person and the dosage. Some people can’t tolerate Rvl in either strength. It can be very scary watching a loved one you’re hoping will get better actually get WORSE for weeks while all you can do is hope the drug will kick in.

Dad’s progress has been a bit difficult to track since he was on again off again for the first 6-7 weeks. But we did see progress about week 6 from the beginning, even with breaks in the regime – his TXs holding longer. This week, 6 weeks after he started back after the surgery and 11 weeks after we started the journey, suddenly his improvement has jumped forward.

I’m hoping and praying this trend continues.

I suggest you check out some of Patti’s posts about herbal supplements etc. I think it’s absolutely critical you help your mom’s body cope with the effects from the Rvl and her disease. Good nutrition is extremely important – difficult with my dad who has little appetite.

One other thing our doc told us: he has had very good luck with Revlemid (and Thalidomide before that) in treating CMML patients and MDS patients without the 5q deletion. He has several people who have been on it longer than dad and a couple of those folks are in remission – no TXs for one lady (who got into a study) for 10 months!

If your mom was having problems and no repsonse on the lower dose 5mg Rvl, I can certainly understand why you’d back off the therapy…especially since she was doing well on Procrit & Neupo without transfusions. It IS a quality of life issue. I hope you’ll keep us posted on her progress now that she’s stopped Rvl – its such a new drug that we’re all learning about it as we go – docs included.

Good luck, and feel free to email me if you have any specific questions.

[Rackon]

Patti, would higher than normal uric acid levels be typical for someone with chronic kidney failure?

[Rackon]

Caroline, thanks for your concern. Dad’s HG went down to 7.6 – but this wasn’t a huge surprise. We’re just thankful he held in the upper 9s for as long as he did. It used to take 4 units a weeks just to keep him above 8,0.

He was transfused with 2 units today.

No matter how sick or dependent they become, your parents will always be your parents and you will always be their “child”. Illness can be a frightening situation for them – nobody likes to make “last” plans. Just try to reassure them that it’s much easier to make contingency plans while they are feeling relatively good – when you really need things like POAs, it’s usually too late. Tell them thiis way is less stressful – and that it’s “just in case”. Reassure them that they will still be making their own health decisions as long as they are able.

Good luck.

[Rackon]

I replied on the other thread – my dad has been on Revlimid for more than 6 weeks with a couple breaks inbetween, one when he went from 10mg to 5 mg and another break from therapy after he broke his hip.

No spine tingling to report, but he does have dry skin and some gassy pain from diarrhea. I think this is fairly common. Diarrhea is listed as one of main side effects on the Revlimid website and the pain your mom has could be associated with that.

The tingling I don’t know about. Since dad is recovering from a broken hip, he may not be noticing “spinal tingling” or he may associate it with his hip recovery. Check with the docs to be sure the tingling isn’t neurological, but it doesn’t seem far fetched to me that a drug that works in the bone marrow might cause sensations *in* the bones.

[Rackon]

Lydia, my dad has had the dry skin and scalp, a bit of diarrhea (which may or may not be related), but no abdominal pain nor spinal tingling.

Be sure you tell your mom’s doctors about these symptoms. They may or may not be Revlimid related. The most common side effects are listed on the Revlimid/Celgene web site.

Beachbum, I share some of your frustration and anger with the obscene prices charged by drug companies but must point out that Revlimid, while a closely related to Thalidomide, is not the exact same drug under another name but a recent, chemically differentiated formulation. (BTW, the price was raised on Thalidomide too!)

The short answer to your question is that Revlimid is an “orphan” drug. Despite the fact that R’s cousin Thalidomide has been around for years, R had to be tested in studies and brought to the market just like any new drug. There is actually a very small number of patients Revlimid will help – it will never make back its development costs. In fact, R is much less expensive than chemo and some other drugs being taken for MDS. Weekly/bi-weekly transfusions and labs for my dad were actually costing *more* than a month’s supply of R.

There is a very good reply to your same post in another thread. As noted there, the manufacturer does have a program to help patients with Revlimid therapy costs who cannot afford it (Revassist).

I understand how you feel. But a letter to our congressional reps won’t do much.

[Rackon]

Caroline, I’m with Patti on this one. Get a POT for YOU.

I have everything I need legally to be able to talk to the doctors (and make decisions in an emergency). Durable POT, Designated Healthcare Rep, Living Will, the works.

I know you’re in Canada and the paperwork may be different but getting POT for you that covers health care disclosure is KEY. Your parents’ POT for each other does you no good at all and *you* need to be stay informed. Since your mom is also ill get one for her as well. Talk to your parents and an attorney ASAP. Carry copies of the documents with you once you receive them so you can provide them to any hospital, nursing facility or doctor whenever you need to do so.

I don’t want to give the impression that everything has been prefectly hunky dory for us either – you must remain ever vigilant in these situations. We have our share of charming, idiot docs south of the border too.

Just an example…The internist on call at dad’s rehab/nursing facility is a piece of work who was too lazy to order even a weekly CBC for him! (I doubt she even knows what CMML or Revlimid *is*!) After she refused to change Dad’s anti-biotic (for a gum infection) that was giving him the runs I also found out she still had him on stool softeners! She wouldn’t return my calls re/the CBCs. Fortunately, the nurses were smart enough to figure the stool softener situation out but we still had a helluva time getting the doc to nix it. I raised holy hell about the CBCs with the supervising nurse and facility manager…this was not a problem at his previous facility (CBCs every other day). This internist had only ordered coumadin levels becuase of the hip surgery. The day I got there and dad had been stuck twice but NO CBC – I hit the roof. The onc-hematologist is literally across the street from Dad’s rehab facility. I threatened to wheel him out the door and take him across the street for the CBCs or change him to another facility if they didn’t order the CBCs.

I hate getting ugly with people – I’m normally a laid back kind of gal. But I can get pretty assertive if I feel I need to. (I’ve been this route with my mom years ago. I will not countenance lazy physicians and I ask questions – lots of them.) Even with good, caring physicians the way patients get handed off to various specialists, and/or rehab and nursing facilities can break continuity of care and jeopardize the patients health – all with the best intentions. You have to be ever vigilant – assume nothing.

Will find out Dad’s HG level this evening. We’re hoping he’s still holding. 2 weeks without a TX has been so great.

[Rackon]

My dad about had a heart attack when he heard the cost of Revlimid!

I just sucked it up and charged that cc I keep for special emergencies. It’s the initial cost that’s breathtaking if you’re on Medicare. (Still, $3500 is a lot better than $7000.)

After that, it doesn’t cost that much more than most other prescriptions. Other orphan drugs can be even more expensive.

It if will help my dad, it’s worth every penny. If it doesn’t, I have no regrets. If the tables had been turned, dad wuld have spent it on me in a heartbeat.

The Revassist program has helped several patients of my dad’s oncologist who need financial help.

Just tell your dad it’s like getting chemo in a capsule (which it is). Chemo is expensive.

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