My sister finished a round of Chemo several weeks ago. She has a symptom of feeling like her insides are shaking after being up for a half hour or so and her hands do shake. She get OK when in bed.

Is this normal and does it last long??

Thanks---Harry

Harry:

Suggest you check drugs.com for side-effects and drug interactions. She may be particularly senstive to this type of chemo. As well, virtually anything is possible as a side-effect with chemo drugs; plus, delayed side-effects are not uncommon.

Has your sister mentioned this to her ONC? Some side-effects are more important than others in terms of what they signifiy. If you need help looking up any of your sister's drugs, let me know.

How is your sister's overall health otherwise - weight, nutritional status, major organs, etc.? All of these can be contributing factors.

Jay

Jay,

Thanks for the response!!
My sister was diagnosed with Hairy Cell Leukemia in February. Her hemoglobin was down to 7 and very tired ---Doc thought she had the FLU for about 5 weeks. Then put her in Hospital to run tests. Her chemo has been done since then--4 treatments with Fludara(fludarabine phosphate). She is 70 and has not been in the best of health for the last 20 years or so but funtional---Chronic Fatigue Synd.??, fibro-myalgia??, depression, panic attacks, eye problems, thyroid problems(hypo).
Her surgeries include --hysterectomy, bladder tack & rectal seal, eye muscles for Blessporspaisms(sp).Takes Botox injections every 2 months.

She has some thyroid problems but I don't think she is being properly treated. Also--indigestion. She is overweight but not a diabetic--yet. I don't thinks she eats properly. All major organs heart, liver, lungs, kidneys, GI system, seem to function OK.

The drugs I know she takes are Prozac, Ativan, Prilosec, Armour thyroid.I know there are more --I just don't know what they are??

She has talked about all her problems with her ONC. Her ONC says her blood results are good now and she will eventually feel good but it is a slow process?? She is going to have an MRI of her head--next week.

Thanks again---Harry

[This message has been edited by Harry (edited 04-19-2002).]

Harry:

Our child's protocol included a drug related to fludarabine [ARA-C] and we did encounter several significant problems. However, these problems did clear as the drug cleared the body. The major and most common concern is kidney damage, including gout and kidney stone formation. This was handled by administering allopurinol until all of the drug was cleared. At one point during the therapy our child was also receiving a full litre of IV fluids each hour, every hour for a full 24 hours. [Not fun and very tiring as unable to sleep for more than 40 minutes at a time because of hourly IV changes and having to go to the bathroom every hour.]

Another serious side effect we encountered - and quite rare according to the sci/med literature - was the almost complete and very rapid loss of vision. This cleared because the HEM/ONC stopped the drug immediately upon identification of this side-effect. This occurred only during the second round this drug. Essentially, this means that you should always monitor for side-effects.

Below is a cut & paste from drugs.com [my preferred drug database/site]. Suggest you print this.

"Geriatrics

Although appropriate studies on the relationship of age to the effects of fludarabine have not been performed in the geriatric population, clinical trials have included elderly patients and geriatrics-specific problems that would limit the usefulness of this medication in the elderly are not expected . However, elderly patients are more likely to have age-related renal function impairment, which may require reduction of dosage in patients receiving fludarabine.

"Drug interactions and/or related problems

The following drug interactions and/or related problems have been selected on the basis of their potential clinical significance (possible mechanism in parentheses where appropriate) - not necessarily inclusive ( = major clinical significance):

"Note:

Combinations containing any of the following medications, depending on the amount present, may also interact with this medication.

"Allopurinol or Colchicine or Probenecid or Sulfinpyrazone

(fludarabine may raise the concentration of blood uric acid as part of a tumor lysis syndrome;
dosage adjustment of antigout agents may be necessary to control hyperuricemia and gout;
allopurinol may be preferred to prevent or reverse fludarabine-induced hyperuricemia because of risk of uric acid nephropathy with uricosuric antigout agents)

"Blood dyscrasia-causing medications (see Appendix II )
(leukopenic and/or thrombocytopenic effects of fludarabine may be increased with concurrent or recent therapy if these medications cause the same effects;
dosage adjustment of fludarabine, if necessary, should be based on blood counts)

"Bone marrow depressants, other (see Appendix II ) or Radiation therapy
(additive bone marrow depression may occur;
dosage reduction may be required when two or more bone marrow depressants, including radiation, are used concurrently or consecutively)

"Pentostatin
(concurrent use with fludarabine is not recommended because of a possible increased risk of fatal pulmonary toxicity )

"Vaccines, killed virus -
(because normal defense mechanisms may be suppressed by fludarabine therapy, the patient's antibody response to the vaccine may be decreased. The interval between discontinuation of medications that cause immunosuppression and restoration of the patient's ability to respond to the vaccine depends on the intensity and type of immunosuppression-causing medication used, the underlying disease, and other factors;
estimates vary from 3 months to 1 year)

"Vaccines, live virus -
(because normal defense mechanisms may be suppressed by fludarabine therapy, concurrent use with a live virus vaccine may potentiate the replication of the vaccine virus, may increase the side/adverse effects of the vaccine virus, and/or may decrease the patient's antibody response to the vaccine;
immunization of these patients should be undertaken only with extreme caution after careful review of the patient's hematologic status and only with the knowledge and consent of the physician managing the fludarabine therapy. The interval between discontinuation of medications that cause immunosuppression and restoration of the patient's ability to respond to the vaccine depends on the intensity and type of immunosuppression-causing medication used, the underlying disease, and other factors;
estimates vary from 3 months to 1 year. Patients with leukemia in remission should not receive live virus vaccine until at least 3 months after their last chemotherapy. In addition, immunization with oral poliovirus vaccine should be postponed in persons in close contact with the patient, especially family members)

"Laboratory value alterations -
The following have been selected on the basis of their potential clinical significance (possible effect in parentheses where appropriate) - not necessarily inclusive ( = major clinical significance):

With physiology/laboratory test values Alkaline phosphatase and Aspartate aminotransferase (AST [SGOT]) ( serum values may rarely be increased )
Uric acid concentrations in blood and urine
(may be increased as part of a tumor lysis syndrome in patients with large tumor burdens )

"Medical considerations/Contraindications -
The medical considerations/contraindications included have been selected on the basis of their potential clinical significance (reasons given in parentheses where appropriate) - not necessarily inclusive ( = major clinical significance).

Risk-benefit should be considered when the following medical problems exist Bone marrow depression
(lower dosage may be necessary )

Chickenpox, existing or recent (including recent exposure) or Herpes zoster (risk of severe generalized disease)

Gout, history of or Urate renal stones, history of
(risk of hyperuricemia as part of a tumor lysis syndrome in patients with large tumor burdens )

Infection Renal function impairment(reduced elimination; dosage adjustment may be necessary )

Sensitivity to fludarabine Caution should be used also in patients who have had previous cytotoxic drug therapy or radiation therapy.

"Patient monitoring
The following are especially important in patient monitoring (other tests may be warranted in some patients, depending on condition;
= major clinical significance):

Hematocrit or hemoglobin and Leukocyte count, total and, if appropriate, differential and Platelet count
(determinations recommended prior to initiation of therapy and at periodic intervals during therapy;
frequency varies according to clinical state, agent, dose, and other agents being used concurrently )

Uric acid concentrations, serum
(recommended prior to initiation of therapy and at periodic intervals during therapy in patients with large tumor burdens, because of the risk of tumor lysis syndrome; frequency varies according to clinical state, agent, dose, and other agents being used concurrently )"

Also suggest that you look up ACOR.org [Association of Cancer Online Resources]. This is a non-profit organization and has email groups, including specific patient groups for different leukemias, lymphomas, etc. This group continues to be very useful for us since we can ask and exchange information with other patients [or their parents] with similar diagnoses. A lot of the time one just doesn't know whether a symptom should be discussed with the HEM/ONC or not. By discussing it with others in similar circumstances, you can get a better perspective. Also very useful for learning about different treatment options.

Another worthwhile site is OncoLink [at U. Penn] - this has detailed information on all of the different leukemias. The few articles I've read on hairy cell leukemia often discuss an enlarged spleen - an indicator of this cancer's progression.

Here are some links for you:

Treatment/articles on hairy cell leukemia:
http://cancer.med.upenn.edu/templates/types/article.cfm?c=8&s=31&ss=248&id=7290#2

OncoLink Home Page:
http://cancer.med.upenn.edu/

I haven't run a drug interaction on your sister's meds [using drugs.com] yet as I need to log off shortly. However, most of the major interactions are covered in the cut & paste.

The fatigue, etc. may be a consequence of the leukemia, the drugs or other things. This is very hard to tell unless the person is being very closely monitored and every detail is recorded. Fludarabine does inhibit the immune system so some of your sister's pre-existing immune-related conditions [unassociated with the leukemia] may change while she's on this regimen. Has her doctor mentioned anything about this?

Will check for your response/questions later this weekend.

Regards,
Jay

Jay,

I really appreciate your answer and the work it took to find all the Information and put it in such a meaningful and understandable form!!

Thanks---Harry

my mother was diagnosed with Hairy Cell Leukaemia back in December '91 and she suffered similar symptoms to your sister - a long running virus that had her washed out and lethargic, and which was initially interpreted as flu. She also bled profusely from small wounds (things such as a tiny cut might take ages to heal, and that kind of thing)

By chance she was diagnosed thanks to a routine blood test. She was put on a course of interferon injections - initially every day, then three times a week, then once a week, then she was taken off the treatment all together and has only just gone back on the drug, taking it at the moment every Mon, Wed and Friday. Although of course she has some side effects from this medication - generally tiredness - she has not suffered hair loss or severe symptoms such as vomiting or the like, and has continued to live a practically normal life (she is now 54, 55 in the summer.)

The treatment my mother takes is not curative, and she has tumours of the spleen as a result of the hairy cell leukaemia which leaves it enlarged. However the interferon vastly increased her platelet count and has succeeded in putting her into remission for a three year period (she has returned to treatment as a preventative rather than a desperate necessity).

It might also be completely coincidental, but my mother has also changed aspects of her diet which seem to have improved things somewhat. She has cut a lot of dairy from her diet (taking soya milk in tea and coffee instead) and regularly eating whole grain products.

The trouble with Hairy Cell is that it is so uncommon. The doctor who treats my mother has only one other case on his books and many doctors do not seem to be aware of all the options there are regarding the disease. Of course I don't know your sister's case and her own personal problems first hand but if she is having trouble managing the chemotherapy they are prescribing her, perhaps you could enquire about interferon and whether or not it might be applicable in her case?
It also seems possible, since HCL is a generally slow acting disease that some of her other symptomatic diseases such as CFS might have been related to or linked with her HCL. My mother suffered on and off for many years with glandular fever and other conditions which appear to have been contributory to her HCL.

However, my mother has been diagnosed with this for 12 years and as I write this is still very much full of life and fight, so I wish your sister all the best and similar good fortune http://www.healthboards.com/ubb/biggrin.gif

Rose

Additional: HCL is often known as a lymphoma leukaemia so it might well be worthwhile doing some digging on lymphomas as well as straight leukaemias...

Taffeta

[This message has been edited by English*rose (edited 03-09-2003).]